I discuss that as well as updating you on a few other issues I'm dealing with in this video blog entry. Because of all the information, it is a little longer than usual (just over 25 minutes). But hopefully you'll find it informative. Thanks for checking in!
Showing posts with label Sinemet. Show all posts
Showing posts with label Sinemet. Show all posts
Friday, February 19, 2016
Exercise Benefits and What Not
It's been a year since I started my exercise routine to help combat Parkinson's. Has it helped? What improvements have I noticed if any?
I discuss that as well as updating you on a few other issues I'm dealing with in this video blog entry. Because of all the information, it is a little longer than usual (just over 25 minutes). But hopefully you'll find it informative. Thanks for checking in!
I discuss that as well as updating you on a few other issues I'm dealing with in this video blog entry. Because of all the information, it is a little longer than usual (just over 25 minutes). But hopefully you'll find it informative. Thanks for checking in!
Tuesday, October 27, 2015
An Update
I'm way overdue for an update on how things are going. I've been trying to find time to do so over the past few months, but responsibilities kept getting in the way. As a result, I have so much to talk about, but I'll try to keep it pithy.
Last blog post I did, I talked about the drug Amantadine that my neurologist prescribed for me back in June. So I'm sure you've all been waiting with bated breath how it has turned out.
By way of remembering, this drug was prescribed to help me get rid of my dyskinesia (random movements resulting from using Sinemet and Azilect together, which for me was mostly head bobbing and left leg movements/toe curling).
When I first took it, it extended my dyskinesia from being a peak dyskinesia lasting about 2 hours, to extend it over most of the Sinemet dose, around 5 hours. Not good. But I remembered that my neurologist indicated I'd probably need to lower my Sinemet dosage, that I should experiment and find the right sweet spot of the mix of drugs for the best results.
So I cut my Sinemet dosage in half. That did result in losing my dyskinesia, but it also isn't as effective in controlling the tremors. The tremors weren't horrible, but sometimes get there between Sinemet doses. So it was a choice between having some tremors, or dyskinesia and very minor tremors.
The one benefit aside from that is Amantadine has helped my left hand to work better. It seems most effective, symptom-wise, in reducing my left arm's distonia (stiffness and muscle pain). That means I can type a little easier. That means, theoretically, I can do my writing easier. Which to a degree I have, though not a lot due to other high priorities on my to-do list. Because of that benefit, I've chosen to continue using Amantadine and put up with the tremors it leaves me with. For now anyway.
But the tremors are not all I have to put up with. There are side-effects, mostly minor. Increased constipation. More swelling of my left foot, especially if I don't get enough sleep. Slightly blurry vision, especially up close (that was happening before using the drug, which I think made it a little worse). A bit more sensitivity to light in my eyes; I've had a pair of prescription shades made to help deal with that while driving.
Thankfully, I've not experienced other side-effects which tend to cause some to stop using it. The most common is stomach upset. One of the more rare, but I know someone on a support forum who had this happen three months into using it, is hallucinations. No, that doesn't include my hallucinations of grandeur.
So for now, my prescription medications include Sinemet 14.5/50 mgs 3x/day (sometimes 4x/day), Azilect 1 mg 1x/day, and Amantadine 100 mgs 2x/day. That seems to be my best combo at this time, though not ideal. But I've yet to have a medication mix that is ideal--erasing all major symptoms.
Another substance I've happened on lately is CDP Choline. A documented study showed the chemical compound increased dopamine production, as well as being neuro-protective, help cellular mitochondria perform better, and aided in improving memory function and/or slow the rate of dementia in those who have it.
It can be bought as a supplement. So I've been taking it in conjunction with Amantadine to help boost dopamine levels a little higher, as well as for its other benefits. So far, so good. I can't point to any specific noticeable symptom improvements, so if there are any, they are not particularly obvious. But I'm continuing to take it in faith that it is helping, and it may help fight the disease. I've also noticed no side-effects either, though the first dose or two, my body was adjusting to it.
I'm taking 1000 mgs 2x/day of it.
Inosine is a substance currently proceeding to a stage 3 clinical trial, as noted recently on the Michael J. Fox Foundation's website. It has shown evidence of being able to slow the progression of Parkinson's. It and a cancer drug, nilotinib, are the two most promising substances currently in clinical trials, with solid hope of slowing this disease down. Currently, no drug has proven in clinical trials to be able to do so. Consequently, there is much excitement and hope in the Parkinson's community about these drugs.
The difference between the two is the cancer drug nilotinib costs currently around ten thousand dollars a month. Meanwhile inosine is available as a cheap supplement; a monthly supply is around ten dollars. That means I'd need a doctor's prescription and be rich to use nilotinib, but inosine is available and affordable now.
You'll note the cautions about using it on the MJF article about it. But the trials have shown it is generally safe to use. But since they've not revealed the ideal dose for safety and effectiveness yet, I figure sticking with the prescribed supplement dose will be safe until clinical trials show what the dosage should be for the most effective treatment. If the supplement dose is too low, at least I'll be one step ahead when it comes out in drug form, assuming it does.
So I've been taking it for a couple months now. No noticeable symptom improvements, but I wasn't expecting any as I'm taking it to slow the progression of Parkinson's and that is something I won't be able to know whether it is happening or not. Nor have I noticed any side-effects. I'm currently taking 500 mgs 2x/day of inosine.
My friend, Michael Strong, brought my attention to the link between vitamin D and cognitive improvement in diseases like Alzheimer's and Parkinson's. In my research, D3, when combined with Zinc and Magnesium, makes for an effective treatment for the prevention of dementia or the improvement for those with the condition. I was already taking magnesium, so I added a D3 and zinc supplement to my list of pills back in June.
I haven't noticed drastic improvements, but then again, so far I don't have dementia. That said, it seems I'm having an easier time thinking, especially in finding the right word to use. I still find myself struggling at times to find the word I'm intending to use, but now seems less frequent.
A word about dementia in Parkinson's. From watching a webinar on MJF website, and other research, there are two things I need to convey.
One, I've mentioned before that I've read 60% of Parkinson's patients will come down with dementia. But I qualified it saying it applied to those who start showing symptoms after the age of 60. I started showing symptoms at 51, so I don't fall into that category. But I recently read that overall, around 30% of Parkinson's patients will end up with dementia. So I wanted to give a more accurate picture of my potential to end up with that symptom.
Two, there are various levels of dementia, from minor to full-blown memory loss. The key thing to know is just because one has a minor dementia symptom does not mean they are destined to eventually have full-blown dementia. So suggesting that I might have some very minor cognitive difficulties as a result of this disease is not saying I'm destined to not know who my wife is at some point down the road.
I've discussed this before. My neurologist mentioned it to me two visits ago. At first I viewed it as a last resort, when the Sinemet no longer is effective in controlling my symptoms. After all, we are talking about sticking a probe down in my brain, and there is the risk of brain damage, however slight, to the process. So I was a bit squeamish about doing it.
But there has been a movement lately to do it earlier than later. One because it will be effective beyond the 5 years commonly quoted. It just means moving the probe on occasion to restore effectiveness due to the build-up of resistance over time to the electrical pulses around the probe. Two because if done earlier, it can eliminate the need for medicine like Sinemet, providing a longer quality of life. If done later, it only reduces symptoms and the amount of drugs needed to manage symptoms.
The prospects of being drug-free and somewhat "normal" again, allowing me to put more time and efficiency into writing, is very motivating. I'm now seriously wanting to look into this option. As a result, I expressed this desire with my neurologist back in June. He said the next step would be for me to see a Movement Disorder Specialist to be evaluated. So I indicated a desire to proceed. Strangely enough, I've not heard of anything happening on that front, or a referral being done. I need to check back with him, though my next appointment isn't too far off. In December if I recall correctly.
But there is part of me that would prefer a new procedure in development which is non-invasive using ultrasound and a MRI. Unfortunately, who knows how much longer it will be before it is widely available and approved by the FDA. The best I could do is find out how to sign up for a trial on it. Probably a long shot.
So, as I find out more about my chances for DBS, I'll let you know.
I'm still doing my exercises I mentioned before: Zumba 4x/week, Pilates 2x/week, Hydro Fit 1x/week at my local Y. According to one instructor, I've become an inspiration to many there, probably along the lines of "If he can do that dealing with his disease, then why am I slacking off?" Apparently I'm talked about regularly as an example of someone not resigning themselves to defeat and fighting back.
Despite that schedule, I noticed my left arm especially, but also my right arm, losing muscle strength. A common result of Parkinson's as muscles deteriorate from constant movement of tremors and distonia. So I decided to up my game.
On the cardiovascular front, I've added a class called Body Step. Essentially an intense cardio workout using a bench you step up and off of in various patterns, in this case, synced with music. Much more intense than Zumba, which at first was exhausting but now only slightly so. It also works on strengthening the legs, obviously. The first time doing it, I was huffing and puffing after each song. Now, about 4 weeks into doing it, I'm still huffing and puffing, but I've noticed it isn't as exhausting as it was at first, so I'm improving.
Then to help the rest of my muscles, I've started going to Body Pump once a week. As you might imagine, it is a workout with weights set to music. Like Body Step, it is pretty intense. I'm using very low weights, and I've learned my weakest exercise is full lunges. So far, I've not been able to do them all, but I'm getting close. But I can tell already that it is helping my strength return.
So now my weekly schedule is:
Monday - Zumba and Pilates
Tuesday - Body Step
Wednesday - Zumba and Pilates
Thursday - Body Pump and Zumba
Friday - none
Saturday - Zumba and Hydro Fit
Sunday - none
This is one reason I don't have as much time to write as you'd think I'd have not having a full-time job. But I do believe it is making a difference in fighting back on this disease. So I keep at it.
The funny thing is, my son who goes with me to Body Pump (he likes weight lifting) is out of commission for a couple days, while I'm continuing to go, go, go. Of course, he's using more weight than I am, but still.
Not much to say here. Only that my wife has been wanting me to apply for disability for quite a while. I've done some research into it, discovered I could qualify. But I had to get my 2014 taxes done first. That finally happened last week, so Friday I applied. It will help since lately we've been pretty tight financially. Not having both of us working, and the added expense of my medications and supplements, has taken its toll.
It won't be until probably this Friday that I'll know the status of the application, and who knows how long before I know if I'm approved or not. Sometimes I know it can take several appeals. So keep me in your thoughts and prayers for a quick positive decision.
That's all for now. Time for me to go to critique group, after I get dinner in the crock pot, and after that, Body Step. Woot!
Amantadine
Last blog post I did, I talked about the drug Amantadine that my neurologist prescribed for me back in June. So I'm sure you've all been waiting with bated breath how it has turned out.
By way of remembering, this drug was prescribed to help me get rid of my dyskinesia (random movements resulting from using Sinemet and Azilect together, which for me was mostly head bobbing and left leg movements/toe curling).
When I first took it, it extended my dyskinesia from being a peak dyskinesia lasting about 2 hours, to extend it over most of the Sinemet dose, around 5 hours. Not good. But I remembered that my neurologist indicated I'd probably need to lower my Sinemet dosage, that I should experiment and find the right sweet spot of the mix of drugs for the best results.
So I cut my Sinemet dosage in half. That did result in losing my dyskinesia, but it also isn't as effective in controlling the tremors. The tremors weren't horrible, but sometimes get there between Sinemet doses. So it was a choice between having some tremors, or dyskinesia and very minor tremors.
The one benefit aside from that is Amantadine has helped my left hand to work better. It seems most effective, symptom-wise, in reducing my left arm's distonia (stiffness and muscle pain). That means I can type a little easier. That means, theoretically, I can do my writing easier. Which to a degree I have, though not a lot due to other high priorities on my to-do list. Because of that benefit, I've chosen to continue using Amantadine and put up with the tremors it leaves me with. For now anyway.
But the tremors are not all I have to put up with. There are side-effects, mostly minor. Increased constipation. More swelling of my left foot, especially if I don't get enough sleep. Slightly blurry vision, especially up close (that was happening before using the drug, which I think made it a little worse). A bit more sensitivity to light in my eyes; I've had a pair of prescription shades made to help deal with that while driving.
Thankfully, I've not experienced other side-effects which tend to cause some to stop using it. The most common is stomach upset. One of the more rare, but I know someone on a support forum who had this happen three months into using it, is hallucinations. No, that doesn't include my hallucinations of grandeur.
So for now, my prescription medications include Sinemet 14.5/50 mgs 3x/day (sometimes 4x/day), Azilect 1 mg 1x/day, and Amantadine 100 mgs 2x/day. That seems to be my best combo at this time, though not ideal. But I've yet to have a medication mix that is ideal--erasing all major symptoms.
CDP Choline
Another substance I've happened on lately is CDP Choline. A documented study showed the chemical compound increased dopamine production, as well as being neuro-protective, help cellular mitochondria perform better, and aided in improving memory function and/or slow the rate of dementia in those who have it.
It can be bought as a supplement. So I've been taking it in conjunction with Amantadine to help boost dopamine levels a little higher, as well as for its other benefits. So far, so good. I can't point to any specific noticeable symptom improvements, so if there are any, they are not particularly obvious. But I'm continuing to take it in faith that it is helping, and it may help fight the disease. I've also noticed no side-effects either, though the first dose or two, my body was adjusting to it.
I'm taking 1000 mgs 2x/day of it.
Inosine
Inosine is a substance currently proceeding to a stage 3 clinical trial, as noted recently on the Michael J. Fox Foundation's website. It has shown evidence of being able to slow the progression of Parkinson's. It and a cancer drug, nilotinib, are the two most promising substances currently in clinical trials, with solid hope of slowing this disease down. Currently, no drug has proven in clinical trials to be able to do so. Consequently, there is much excitement and hope in the Parkinson's community about these drugs.
The difference between the two is the cancer drug nilotinib costs currently around ten thousand dollars a month. Meanwhile inosine is available as a cheap supplement; a monthly supply is around ten dollars. That means I'd need a doctor's prescription and be rich to use nilotinib, but inosine is available and affordable now.
You'll note the cautions about using it on the MJF article about it. But the trials have shown it is generally safe to use. But since they've not revealed the ideal dose for safety and effectiveness yet, I figure sticking with the prescribed supplement dose will be safe until clinical trials show what the dosage should be for the most effective treatment. If the supplement dose is too low, at least I'll be one step ahead when it comes out in drug form, assuming it does.
So I've been taking it for a couple months now. No noticeable symptom improvements, but I wasn't expecting any as I'm taking it to slow the progression of Parkinson's and that is something I won't be able to know whether it is happening or not. Nor have I noticed any side-effects. I'm currently taking 500 mgs 2x/day of inosine.
Vitamin D3 and Zinc
My friend, Michael Strong, brought my attention to the link between vitamin D and cognitive improvement in diseases like Alzheimer's and Parkinson's. In my research, D3, when combined with Zinc and Magnesium, makes for an effective treatment for the prevention of dementia or the improvement for those with the condition. I was already taking magnesium, so I added a D3 and zinc supplement to my list of pills back in June.
I haven't noticed drastic improvements, but then again, so far I don't have dementia. That said, it seems I'm having an easier time thinking, especially in finding the right word to use. I still find myself struggling at times to find the word I'm intending to use, but now seems less frequent.
A word about dementia in Parkinson's. From watching a webinar on MJF website, and other research, there are two things I need to convey.
One, I've mentioned before that I've read 60% of Parkinson's patients will come down with dementia. But I qualified it saying it applied to those who start showing symptoms after the age of 60. I started showing symptoms at 51, so I don't fall into that category. But I recently read that overall, around 30% of Parkinson's patients will end up with dementia. So I wanted to give a more accurate picture of my potential to end up with that symptom.
Two, there are various levels of dementia, from minor to full-blown memory loss. The key thing to know is just because one has a minor dementia symptom does not mean they are destined to eventually have full-blown dementia. So suggesting that I might have some very minor cognitive difficulties as a result of this disease is not saying I'm destined to not know who my wife is at some point down the road.
Deep Brain Stimulation
I've discussed this before. My neurologist mentioned it to me two visits ago. At first I viewed it as a last resort, when the Sinemet no longer is effective in controlling my symptoms. After all, we are talking about sticking a probe down in my brain, and there is the risk of brain damage, however slight, to the process. So I was a bit squeamish about doing it.
But there has been a movement lately to do it earlier than later. One because it will be effective beyond the 5 years commonly quoted. It just means moving the probe on occasion to restore effectiveness due to the build-up of resistance over time to the electrical pulses around the probe. Two because if done earlier, it can eliminate the need for medicine like Sinemet, providing a longer quality of life. If done later, it only reduces symptoms and the amount of drugs needed to manage symptoms.
The prospects of being drug-free and somewhat "normal" again, allowing me to put more time and efficiency into writing, is very motivating. I'm now seriously wanting to look into this option. As a result, I expressed this desire with my neurologist back in June. He said the next step would be for me to see a Movement Disorder Specialist to be evaluated. So I indicated a desire to proceed. Strangely enough, I've not heard of anything happening on that front, or a referral being done. I need to check back with him, though my next appointment isn't too far off. In December if I recall correctly.
But there is part of me that would prefer a new procedure in development which is non-invasive using ultrasound and a MRI. Unfortunately, who knows how much longer it will be before it is widely available and approved by the FDA. The best I could do is find out how to sign up for a trial on it. Probably a long shot.
So, as I find out more about my chances for DBS, I'll let you know.
Exercise
I'm still doing my exercises I mentioned before: Zumba 4x/week, Pilates 2x/week, Hydro Fit 1x/week at my local Y. According to one instructor, I've become an inspiration to many there, probably along the lines of "If he can do that dealing with his disease, then why am I slacking off?" Apparently I'm talked about regularly as an example of someone not resigning themselves to defeat and fighting back.
Despite that schedule, I noticed my left arm especially, but also my right arm, losing muscle strength. A common result of Parkinson's as muscles deteriorate from constant movement of tremors and distonia. So I decided to up my game.
On the cardiovascular front, I've added a class called Body Step. Essentially an intense cardio workout using a bench you step up and off of in various patterns, in this case, synced with music. Much more intense than Zumba, which at first was exhausting but now only slightly so. It also works on strengthening the legs, obviously. The first time doing it, I was huffing and puffing after each song. Now, about 4 weeks into doing it, I'm still huffing and puffing, but I've noticed it isn't as exhausting as it was at first, so I'm improving.
Then to help the rest of my muscles, I've started going to Body Pump once a week. As you might imagine, it is a workout with weights set to music. Like Body Step, it is pretty intense. I'm using very low weights, and I've learned my weakest exercise is full lunges. So far, I've not been able to do them all, but I'm getting close. But I can tell already that it is helping my strength return.
So now my weekly schedule is:
Monday - Zumba and Pilates
Tuesday - Body Step
Wednesday - Zumba and Pilates
Thursday - Body Pump and Zumba
Friday - none
Saturday - Zumba and Hydro Fit
Sunday - none
This is one reason I don't have as much time to write as you'd think I'd have not having a full-time job. But I do believe it is making a difference in fighting back on this disease. So I keep at it.
The funny thing is, my son who goes with me to Body Pump (he likes weight lifting) is out of commission for a couple days, while I'm continuing to go, go, go. Of course, he's using more weight than I am, but still.
Disability
Not much to say here. Only that my wife has been wanting me to apply for disability for quite a while. I've done some research into it, discovered I could qualify. But I had to get my 2014 taxes done first. That finally happened last week, so Friday I applied. It will help since lately we've been pretty tight financially. Not having both of us working, and the added expense of my medications and supplements, has taken its toll.
It won't be until probably this Friday that I'll know the status of the application, and who knows how long before I know if I'm approved or not. Sometimes I know it can take several appeals. So keep me in your thoughts and prayers for a quick positive decision.
That's all for now. Time for me to go to critique group, after I get dinner in the crock pot, and after that, Body Step. Woot!
Tuesday, May 19, 2015
Partners for Parkinson's Event
This past weekend, dovetailed into my 33rd wedding anniversary, my wife and I attended an event titled "Partners in Parkinson's," a group associated with the Micheal J. Fox Foundation which seeks to develop help for Parkinson's patients and their caregivers through sharing information and helping to develop a "care team" for the patient. (Now that's a good run-on sentence!)
Thought I'd give a summary of how the event went.
First, there was the obvious benefit of meeting other people with Parkinson's. You get to compare notes, see others are not only surviving this disease, but thriving. And of course we saw a few who were further along and in worse shape than I am currently.
Second, we discovered some new resources in exercise, and other similar helps. Several people emphasize the need for exercise to help deal with the symptoms of this disease. Info like that confirmed I'm on the right track with all the exercise I've taken on in the last couple of months. I believe it is helping me in more than one way, but it is hard to nail down specifics other than an overall feeling of doing better.
Third, we learned a few things that we didn't know before. Some of it relating to questions we asked one-on-one with panelist and a movement disorder specialist.
One of those was in relation to dopamine and its long-term effectiveness. We were told that it is a popular myth that dopamine loses its effectiveness through long-term use. Rather, the reason one needs to take more and more of it is because the disease progresses. As more dopamine-producing neurons die, it requires more and more of the drug to offset the loss of dopamine. So the slower the progression, the less of the drug that will be needed over a period of time.
Also learned more about why dyskinesia (involuntary movements as a side-effect of the drug) eventually happens. The neurons that produce dopamine also store it. In the beginning of taking the drug, not only is there less dopamine being thrown into the brain, but the neurons still alive are able to absorb and store some of it to help regulate how much is in the pathways at a given time. Too much overexcites the nervous system and causes the involuntary movements.
As more neurons die, not only is more dopamine needed via the drug, but the ability of the brain to store and regulate the dopamine levels diminishes, resulting in more dyskinesia due to too much dopamine hitting receptors, triggering movements the brain didn't intend.
What this means for me since I've developed dyskinesia so early may be either my progression has been fast and I've lost a significant number of neurons over the past two years, or my symptoms started later than most at my stage of neuron loss.
Another "myth" I learned about is the idea that deep-brain stimulation's (a pacemaker for the brain) effectiveness wears off around 5 years or so, then it's done. What really happens is the area around the probe gets "calloused" due to the flow of electricity from the probe. As it becomes less sensitive around the probe, it blocks more and more of the electrical current, making it less effective.
The solution to this is to move the probe to a different part of the brain. Then it can be just as effective as ever in regulating movement symptoms. So DBS isn't just a temporary fix. It just requires some maintenance for long-term use.
This is one reason why many are now suggesting DBS earlier than later. Early on, it can be sufficient to regulate movement symptoms without additional medications, resulting in a higher quality of life early on. As the disease progresses, DBS may not be able to stop all the symptoms and require additional medication. Typically people who get DBS in later stages are able to reduce their medications and still the combo doesn't eliminate all symptoms.
So if I wait until I'm pretty bad off, DBS may bring me back to my current condition. But if I get it now, I might be able to be "normal" without medication for a period of years. Which would give me more writing time and an efficiency I currently don't have.
I just have to get past the idea of having a probe stuck in my brain. But being "normal" for a few more years, and productive, is motivating me to consider it sooner than later.
Anyway, the event was worthwhile, and the whole weekend was good. We had a great anniversary and enjoyed visiting with friends we'd not seen in a while. Many blessings to count.
Thought I'd give a summary of how the event went.
First, there was the obvious benefit of meeting other people with Parkinson's. You get to compare notes, see others are not only surviving this disease, but thriving. And of course we saw a few who were further along and in worse shape than I am currently.
Second, we discovered some new resources in exercise, and other similar helps. Several people emphasize the need for exercise to help deal with the symptoms of this disease. Info like that confirmed I'm on the right track with all the exercise I've taken on in the last couple of months. I believe it is helping me in more than one way, but it is hard to nail down specifics other than an overall feeling of doing better.
Third, we learned a few things that we didn't know before. Some of it relating to questions we asked one-on-one with panelist and a movement disorder specialist.
One of those was in relation to dopamine and its long-term effectiveness. We were told that it is a popular myth that dopamine loses its effectiveness through long-term use. Rather, the reason one needs to take more and more of it is because the disease progresses. As more dopamine-producing neurons die, it requires more and more of the drug to offset the loss of dopamine. So the slower the progression, the less of the drug that will be needed over a period of time.
Also learned more about why dyskinesia (involuntary movements as a side-effect of the drug) eventually happens. The neurons that produce dopamine also store it. In the beginning of taking the drug, not only is there less dopamine being thrown into the brain, but the neurons still alive are able to absorb and store some of it to help regulate how much is in the pathways at a given time. Too much overexcites the nervous system and causes the involuntary movements.
As more neurons die, not only is more dopamine needed via the drug, but the ability of the brain to store and regulate the dopamine levels diminishes, resulting in more dyskinesia due to too much dopamine hitting receptors, triggering movements the brain didn't intend.
What this means for me since I've developed dyskinesia so early may be either my progression has been fast and I've lost a significant number of neurons over the past two years, or my symptoms started later than most at my stage of neuron loss.
Another "myth" I learned about is the idea that deep-brain stimulation's (a pacemaker for the brain) effectiveness wears off around 5 years or so, then it's done. What really happens is the area around the probe gets "calloused" due to the flow of electricity from the probe. As it becomes less sensitive around the probe, it blocks more and more of the electrical current, making it less effective.
The solution to this is to move the probe to a different part of the brain. Then it can be just as effective as ever in regulating movement symptoms. So DBS isn't just a temporary fix. It just requires some maintenance for long-term use.
This is one reason why many are now suggesting DBS earlier than later. Early on, it can be sufficient to regulate movement symptoms without additional medications, resulting in a higher quality of life early on. As the disease progresses, DBS may not be able to stop all the symptoms and require additional medication. Typically people who get DBS in later stages are able to reduce their medications and still the combo doesn't eliminate all symptoms.
So if I wait until I'm pretty bad off, DBS may bring me back to my current condition. But if I get it now, I might be able to be "normal" without medication for a period of years. Which would give me more writing time and an efficiency I currently don't have.
I just have to get past the idea of having a probe stuck in my brain. But being "normal" for a few more years, and productive, is motivating me to consider it sooner than later.
Anyway, the event was worthwhile, and the whole weekend was good. We had a great anniversary and enjoyed visiting with friends we'd not seen in a while. Many blessings to count.
Wednesday, April 1, 2015
An Inside Look at Parkinson's Disease
For Parkinson's Awareness Month, which is April, I wanted to give an inside look at what it is like to have Parkinson's Disease (PD). Some people know something about it either through experience or study, but many either know nothing about it, or have a very incomplete or stereotypical understanding of it.
To do that, I'm going to take you through a list of the most common symptoms someone with the disease tends to experience and relate my experience with them as it may apply.
Which leads to a disclaimer. With PD, there is no one-size-fits-all list both on symptoms or treatments. Any one PD patient may experience only a few of these, or several. A symptom one patient has, another may not. Even the characteristic tremors are not evident in all PD patients.
Some of the symptoms I'll list I've not had . . . yet. I may never have to deal with them. Some that I have, another PD patient will never have.
If you already know this information, feel free to skip to the next heading. For those who need a fuller picture, here are the basics you'll want to know.
Currently, PD is an incurable and progressive disease, meaning, as time goes by, it becomes worse. Commonly, there are 5 stages of disease progression.
Currently I'm in stage 2, which can last for who knows how long. Could be a couple of years or 15. Stage 3 is considered a turning point in making life especially difficult due to freezing of movements and the ever present threat of falls.
There is a common saying: you don't die from Parkinson's, you die with it. True in a literal sense. However, PD is often the reason for the other things that can kill you. Most common are falls resulting in life-threatening situations (obviously the older one gets, the more likely that can happen) or immediate death by blows to the head or other significant organs. Another example is depression resulting from PD that can lead to suicide, as happened in the case of Robin Williams recently.
Currently, it is unknown what causes PD. There are a few known contributing factors, including genetics and exposure to pesticide, but those only account for a few percentage points of those who come down with the disease. It has been determined that the causative factors for it tend to be 20 to 30 years prior to the manifestation of symptoms. Which means whatever caused me to get this disease likely happened in the 90s when I was in my 30's.
Some of the processes are understood. A simplified explanation is that the disruption of normal brain-chemical functioning results in dopamine-producing neuron death. Dopamine is a critical neuron messenger in the brain which controls movement, among other functions.
As we age, we naturally lose the ability to produce dopamine, but normally it never drops below the level where it affects the ability of the central nervous system to operate efficiently. For PD patients, this loss is sped up so that at some point in life, the dopamine supply drops to a critical level, making bodily movements difficult. As the PD patient ages, those supplies get lower and lower, resulting in the progression mentioned above.
It is estimated it affects around 6% of the world's population. It is the second biggest cause of neurological disorders, behind Alzheimer's.
It is said by the time a PD patient starts showing symptoms, 85% of the brain's dopamine-producing cells have died. Due to this progression, the bulk of PD patients don't start showing symptoms until after 55 years of age, which is why it is often associated with senior adults. However, there are a large number of patients who develop symptoms earlier than that. Some as early as their 20s (like Michael J. Fox) or early 50s (like me). Like I said, there is no one-size-fits-all when it comes to PD.
The following list of symptoms are known as Parkinsonisms. That is, they are characteristic of PD. However, these symptoms are not always caused by PD. Indeed, there is currently no test to determine if a person has PD. Diagnosis is made by observing the presence of the symptoms, often prescribing a levadopa drug like Sinemet (which adds dopamine to the brain--if symptoms go away, it is a strong indicator of PD being the cause, but not definitively), and the elimination of other causes, such as strokes, ALS, multiple sclerosis, etc. One common disease that can produce tremors, for instance, is Essential Tremors. Like PD, they don't know what causes it, there is no cure, but isn't nearly as long-term debilitating as PD.
So if you have or know someone who has any of these symptoms, it doesn't necessarily mean it is PD. It does mean it is time to go see your doctor to find out what it is.
With that said, below is an non-exhaustive list of the most common PD symptoms and my experience, if any, with them.
This is often one of the first symptoms people may notice. With it goes the ability to taste as well too. One commentor on a form I frequent recently commented that all wine taste the same to him now, so he no longer feels a need to splurge for the more expensive wines.
This is also a good spot to note that not all PD symptoms are motor related. There are several, as you'll see, that have little to do with movement ability.
So far, the loss of smell is one symptom I've skipped. If I've lost any smelling ability, it hasn't been enough to be noticeable. I may experience this later, or maybe never.
This is another early non-motor symptom. Due to the changes in the brain, plus the news that one has a non-curable, progressively debilitating disease, is depression. Aside from making life seem dreary and hopeless, it can lead to suicide if it gets bad enough.
Thankfully I've not experienced much depression thus far. The only depression I've had in the last four years I know wasn't due to PD, and happened before PD symptoms set in. It's possible PD may have contributed to it, but it only lasted a month and I was able to exit the depression once I dealt with the actual issues underlying it.
This is a condition that can have several causes. It refers to a lack of muscle tone and stiffness in a limb or other parts of the body. It can be painful.
With PD induced dystonia, the lack of dopamine produces erratic signals to the muscle, causing it to be in a continual state of contractions. This produces stiffness and pain, and lack of usability of that limb.
I have this primarily in my left arm, and to some degree in my left leg/foot. When I'm focused on something physical, I also experience it in my mouth.
The last time I took a "holiday" from my Sinemet medication, in part to see how much symptoms had developed, by the end of five days my left arm was so stiff and in pain it was unusable for task like typing. Needless to say I won't be trying that again.
This is the first symptom I noticed back in 2012, though I didn't know what it was at the time. When I was driving, my left hand involuntarily clamped hard on the steering wheel, causing tightness and pain in my left hand. The second symptom was pain in my shoulder when bringing my left arm over my head for a swimming stroke. The third symptom I noticed toward the end of that year was difficulty in typing as smoothly and quickly with my left hand--the loss of fine motor control of the fingers. All those resulted from dystonia.
Currently I always feel some stiffness and pain in that arm, but it gets better during peak periods of my medication, and worse towards the beginning and ends of my doses (known as off times). Like right now I'm 20 minutes from taking my next Sinemet pill, and typing is slow and difficult, with a constant dull pain along my arm. Thankfully, though minor tremors have migrated to my right arm/hand, it hasn't developed any dystonia so far. Hopefully it stays that way for a few years.
This is why if you visit with me in person, you'll notice I stretch my left arm, hand, and fingers a lot, and rub them when it gets bad, as it seems to help.
Another way a PD patient can get dystonia is from the levadopa medication itself. It is a subset of dyskinesia which we'll talk about in a bit. With the infusion of dopamine through drugs, the central nervous system's connections with the brain get over excited. One result of this is repeated contractions of a body part.
For me it is toe curling, specifically my left foot toe next to my small toe. Consequently, unlike my left arm's dystonia, my left foot's dystonia gets worse during a peak dose of Sinemet. If I'm on my feet much, that left toe begins to hurt as it is constantly pushing into the floor or bottom of my shoe. Sometimes it causes me to limp.
As the disease progresses, the Sinemet becomes less effective and the affected limbs more painful.
This is the classic symptom most people think of in relation to PD. Due to motor-control neurons mis-firing, because of the lack of dopamine in the brain, erratic signals are sent to certain muscle groups, causing them to jerk or do repetitive motions.
One common motion you'll see is called "pill rolling," as the thumb moves in a circular motion around the fingers as if rolling a pill between them. Not all PD patients do that. I've experienced it some in my left hand when tremors were bad, but it has been a while since I've done that mostly likely thanks to my medicine.
This was the fourth symptom I noticed late in 2012. My left hand developed mild tremors. Over the course of 2013, it became noticeably worse and led me to go see a doctor. By the end of 2013, I had been diagnosed and was on medication for it. About the middle of 2014, my right hand began to show signs of tremors, indicating the disease was spreading to my right side.
Aside from making some task more difficult, the tremors make typing more of a chore. Frequently, my left fingers will be resting on the keyboard, and a finger will twitch, causing involuntary keystrokes that usually don't belong on the page. That combined with the dystonia means when I type, I often do a lot of backspacing.
My medications currently keep my tremors under control most of the time, except during off-times: at the beginning and end of a dose. However, stress tends to bring them out in full force. Like the last time I was stopped by the police for a taillight being out. When he asked me for my ID, my arm and hand were shaking like a leaf in a strong wind. Even minor stress can uncover some tremors at times, like focusing on something intensely. For example, when I do Yoga or Pilates, my hands tend to tremor some.
Over time, the medications will become less effective, requiring more extreme measures like Deep Brain Stimulation surgery (a pacemaker for the brain). Eventually, if I live long enough, not much will keep me from tremoring away. That usually happens in the more advanced stages: 4 and 5.
This is another form of uncontrolled movement. It is not caused by PD itself, but is a side-effect from using levadopa therapy. Since taking dopamine straight will not get to the brain, thanks to the brain's blood barrier, the primary treatment for PD symptoms is using a precursor of dopamine, levadopa, which can cross the blood-brain barrier. It then gets converted to dopamine once inside.
By supplying the brain with additional dopamine, it helps to replace that which is missing due to cell death, allowing the brain to operate normally. It effectively reduces many PD symptoms, sometimes making the person feel perfectly normal again, especially in the early stages. I'm one of the more unlucky ones in that regard, in that it has never made me feel perfectly normal, but it does significantly reduce the intensity level of my symptoms.
However, as mentioned above, it also has the side-effect of over-exciting the brain and central nervous system's connections. This results in a different form of uncontrolled movements resulting not from the disease, but extended use of the medicine.
The average time a person might expect to see dyskinesia symptoms after starting levadopa therapy is around 6 years, so I've read. Usually it takes higher doses over a period of time before symptoms manifest.
Unfortunately for me, I've beat that average by a mile. I took some levadopa in 2013 for about one or two months. Then I was off it until restarting in January of 2014. In September of 2014, upon doubling my Sinemet dose (one form of levadopa commonly used), I experienced my first dyskinesia symptoms. So we dropped it back down at the end of September and the symptoms disappeared.
Then my new neurologist prescribed Azilect. It isn't levadopa, but inhibits the breakdown of dopamine in the brain so it builds up a bigger supply. In effect, it magnifies the effect of any levadopa one is taking. When we started the 0.5 mg/day dose, I noticed a reappearance of dyskinesia, but fairly minor and manageable. Since we've upped it to the 1 mg/day dose, the dyskinesia has become significantly worse.
The difference between these uncontrolled movements and tremors is that these are smoother and bigger, and not limited to my hands. The primary areas it affects are my head, causing it to bob around, my left calf muscle and foot, and a general wobbly feel in my whole body. It feels like someone is putting their hand on me and pushing it around. So a lot less jerky like tremors. It can also make one talk less smooth, sort of stuttering.
A good example of this symptom is Michael J. Fox. If you pull up any of his recent interviews on YouTube, especially between the time of 2000 - 2010, you'll see him wiggling around a lot. Recently they came out with medication that helps reduce those effects, and I believe he has been using it, so real recent interviews he's not quite as bad. The bad news is that medication generally only last around six months.
As I mentioned previously, another effect of this symptom is additional dystonia due to the uncontrolled movements. Currently, I experience that in my left toes and my neck, which tires when my head moves around too much.
Probably the hardest aspect of this symptom to deal with so far has been standing or being on my feet for long periods of time. The hardest of those tends to be at church when I'm on my feet without moving much for around three hours. My left leg gets very antsy, like restless leg syndrome, making it an endurance exercise at times. That combined with the pain in my left toe make for a "fun" service.
Currently I'm not as bad as what you'll see if you've seen Michael J. Fox. But I'm on the road to it unless some changes in my medications eliminate it.
Ah, everyone's favorite subject. PD tends to make one more prone to constipation. Let's just say I've experienced some real struggles with this one. I used to treat it by eating a good supply of prunes every night, but found a magnesium supplement works quite well. I take a magnesium taurate supplement twice a day, which gives me 200 mg per day. Haven't had any problems with this for months.
Nuff said.
PD can affect how well a person can control their excretion processes. I've had more than one "accident" on both ends of the system. Sinemet seems to have helped, as has taking a good probiotic (PD patients tend to be missing whole families of bacteria in the gut).
My two biggest problems with this so far relates to the bladder. One, at times I've lost my early warning system. When I start feeling I need to go, I've got precious little time before it becomes desperate. This makes taking trips a real pain at times.
Two, there are times when I feel I need to go shortly after having gone. Sometimes it is a dribble, other times it is substantial. Oddly enough it tends to happen most when I'm working in the kitchen. One time making breakfast I had to stop what I was doing 5 times to go. Very annoying. But it comes and goes. Most of the time I don't have this problem.
This is one symptom many doctors are not even aware of. Studies have shown that it affects around 50% of PD patients. It doesn't appear to be due to medications, but the disease itself. It too can be one of the early symptoms.
I first experienced this in September of 2012, shortly before my difficulty with typing set in. I caught what I believed was a cold, but after the cold symptoms disappeared, the runny nose stayed and has never gone totally away. At times it has been better, but currently I blow my nose several times a day.
Incidentally, earlier in 2012 I began having a chronic problem with boils. I discovered it was caused by an infection in the sinus cavities. After applying an antibiotic ointment for a period of time, the boils stopped. It wasn't long after that when the dystonia in the left hand began.
My doctor said the symptoms weren't related, that I likely had developed allergies and prescribed an antihistamine. It wasn't until last year that I discovered the above article and the link between the two.
Certain nasal sprays have reportedly helped.
This refers to slowness of movement and reduced movement. Unlike other symptoms of PD, this one is present in all cases. The most common examples are lack of swing in an arm while walking, slowness to initiate movements, and small handwriting.
I've experienced this symptom as well. My left arm doesn't swing well unless I consciously force it. My handwriting does have a tendency to shrink in size. There are times I feel like I'm moving through molasses and I'm slow to respond to stimuli.
I believe my medication has helped with this some, but it hasn't gone away.
This was an early symptom my brother noticed. Many PD patients tend to have an expressionless face, like they're not all there. It was also one of the first symptoms my neurologist noticed upon my first visit.
The important thing to know is that just because someone with PD has a blank face, it doesn't mean they've checked out. It is simply one symptom of PD where facial muscles have lost control.
Nothing like drooling to make you feel you're reverting to your baby days. But it is a common symptom of PD. Obviously a little embarrassing in public.
I did have a period where I kept catching drool trying to escape from my mouth. My medications have kept it under control thus far, so you're not likely to see me drooling any time soon. But as medications become less effective, I'm sure it will be part of my future.
Around 60% of PD patients experience dementia. Dementia isn't merely forgetting things, but loss of ability to recognize people or events, confusion in thinking, loss of cognitive functions, and hallucinations, among others.
To date, while I think some of my thinking processes have slowed, I've not exhibited any signs of dementia. But it tends to manifest itself in the later stages of PD, so I'm by no means out of the woods. Of the symptoms, this is probably the one I fear the most, not just for me, but for my wife who would be taking care of me.
So far, so good. Still a lot of this journey left to travel, though. All in God's hands.
Difficulty swallowing correctly is a fairly common PD symptom. Not so much in being able to swallow, but being able to swallow without getting liquid into your lungs. The flap that should cover the windpipe when you swallow doesn't work as expected.
One common result of this in advanced cases is the risk of pneumonia, and with it, possible death.
Normally I don't experience this. The only exception is when swallowing pills. It is common at least once when taking my supplements to get water down my windpipe. I've yet to have any problem with normal drinking, but it is likely a problem I'll deal with in the future.
Many PD patients experience problems with sleeping. Common is the presence of tremors and dystonia pain makes falling asleep hard. Once asleep, those tend to disappear. It is the getting to sleep that can be a problem.
Another common sleep problem is the need to frequently go to the bathroom. Many PD patients find themselves waking up in the middle of the night frequently due to this. Then if symptoms make falling back asleep hard, it is a double whammy.
Likewise, some experience the opposite. Due to lack of energy some feel a need to sleep more than usual, leaving little time for productive task completion.
There are also studies showing that PD can negatively affect REM sleep, making one feel less rested after a night of sleep.
To date, I've rarely had trouble getting to sleep and getting enough. I've always been a good sleeper. So to date, I've escaped this symptom.
Frequently, PD tends to weaken the affected muscles. As the disease progresses, it gets worse.
I've noticed this to a degree. I find opening packages or unscrewing lids from jars to be much harder than it has been in the past. Scissors have become my best friend in that regard. I can still lift a decent amount of weight, but I've noticed in my left arm that ability has been reduced.
I've been doing more resistance exercises of late to help with that issue.
Another critical problem among many PD patients is balance issues. As noted above, this is especially critical in stage 3 of the disease, when falling becomes more of a threat. At each visit, my neurologist ask if I've had any incidents of falling in the past few months. As I mentioned at the beginning, falling is one of the main ways PD patients experience injury, life-threatening complications, or even death.
I can tell my balance has been affected. I'm a little more unsteady on my feet than I used to be. To date, though, I've not had any real falls due to this. The only one that could be attributed to it, and it was more a matter of getting my feet tangled in a vacuum cleaner hose, was a slow, controlled fall, in part due to the table I tried to steady myself with not staying put, but slowly scooting out.
During Yoga and Pilates, we do some balance exercises. I currently find these difficult not to end up putting my foot down to keep from falling. I'm doing Tai Chi which is known for helping with this problem. Looks like when I get to phase 3, it will be an issue, unless my work now can head it off or reduce it. We'll see.
As I said, the above list isn't exhaustive. Each person may have other symptoms not listed. I may have forgotten even some of my own symptoms to mention. However, the above list should help to give you a clearer picture of what many PD patients face with this disease. It isn't just tremors that are the issue, but a whole range of issues.
My treatment plan involves exercise (currently Zumba, Pilates, Yoga, Tia Chi, lifting weights, and swimming), good nutrition, and a combination of supplements and prescribed medications. My symptoms would be much worse without them.
Feel free to subscribe to this blog (top right) using either RSS feed or email, if you wish to follow my journey with this disease. Thanks for reading.
To do that, I'm going to take you through a list of the most common symptoms someone with the disease tends to experience and relate my experience with them as it may apply.
Which leads to a disclaimer. With PD, there is no one-size-fits-all list both on symptoms or treatments. Any one PD patient may experience only a few of these, or several. A symptom one patient has, another may not. Even the characteristic tremors are not evident in all PD patients.
Some of the symptoms I'll list I've not had . . . yet. I may never have to deal with them. Some that I have, another PD patient will never have.
What is the basis for PD?
If you already know this information, feel free to skip to the next heading. For those who need a fuller picture, here are the basics you'll want to know.
Currently, PD is an incurable and progressive disease, meaning, as time goes by, it becomes worse. Commonly, there are 5 stages of disease progression.
- Stage 1: Minor symptoms that don't impair daily life.
- Stage 2: Symptoms cause tasks to take longer, but are still doable. Symptoms often progress to the unaffected side during this stage.
- Stage 3: Characterized by balance issues, freezing, tendency to fall.
- Stage 4: Many task are not able to be completed without assistance. Walking often needs a walker or other device. Can't live alone due to lack of mobility and tendency to fall.
- Stage 5: Wheelchair bound, needing continual care, unable to do much for themselves.
Currently I'm in stage 2, which can last for who knows how long. Could be a couple of years or 15. Stage 3 is considered a turning point in making life especially difficult due to freezing of movements and the ever present threat of falls.
There is a common saying: you don't die from Parkinson's, you die with it. True in a literal sense. However, PD is often the reason for the other things that can kill you. Most common are falls resulting in life-threatening situations (obviously the older one gets, the more likely that can happen) or immediate death by blows to the head or other significant organs. Another example is depression resulting from PD that can lead to suicide, as happened in the case of Robin Williams recently.
Currently, it is unknown what causes PD. There are a few known contributing factors, including genetics and exposure to pesticide, but those only account for a few percentage points of those who come down with the disease. It has been determined that the causative factors for it tend to be 20 to 30 years prior to the manifestation of symptoms. Which means whatever caused me to get this disease likely happened in the 90s when I was in my 30's.
Some of the processes are understood. A simplified explanation is that the disruption of normal brain-chemical functioning results in dopamine-producing neuron death. Dopamine is a critical neuron messenger in the brain which controls movement, among other functions.
As we age, we naturally lose the ability to produce dopamine, but normally it never drops below the level where it affects the ability of the central nervous system to operate efficiently. For PD patients, this loss is sped up so that at some point in life, the dopamine supply drops to a critical level, making bodily movements difficult. As the PD patient ages, those supplies get lower and lower, resulting in the progression mentioned above.
It is estimated it affects around 6% of the world's population. It is the second biggest cause of neurological disorders, behind Alzheimer's.
It is said by the time a PD patient starts showing symptoms, 85% of the brain's dopamine-producing cells have died. Due to this progression, the bulk of PD patients don't start showing symptoms until after 55 years of age, which is why it is often associated with senior adults. However, there are a large number of patients who develop symptoms earlier than that. Some as early as their 20s (like Michael J. Fox) or early 50s (like me). Like I said, there is no one-size-fits-all when it comes to PD.
Parkinsonisms
The following list of symptoms are known as Parkinsonisms. That is, they are characteristic of PD. However, these symptoms are not always caused by PD. Indeed, there is currently no test to determine if a person has PD. Diagnosis is made by observing the presence of the symptoms, often prescribing a levadopa drug like Sinemet (which adds dopamine to the brain--if symptoms go away, it is a strong indicator of PD being the cause, but not definitively), and the elimination of other causes, such as strokes, ALS, multiple sclerosis, etc. One common disease that can produce tremors, for instance, is Essential Tremors. Like PD, they don't know what causes it, there is no cure, but isn't nearly as long-term debilitating as PD.
So if you have or know someone who has any of these symptoms, it doesn't necessarily mean it is PD. It does mean it is time to go see your doctor to find out what it is.
With that said, below is an non-exhaustive list of the most common PD symptoms and my experience, if any, with them.
Loss of smell
This is often one of the first symptoms people may notice. With it goes the ability to taste as well too. One commentor on a form I frequent recently commented that all wine taste the same to him now, so he no longer feels a need to splurge for the more expensive wines.
This is also a good spot to note that not all PD symptoms are motor related. There are several, as you'll see, that have little to do with movement ability.
So far, the loss of smell is one symptom I've skipped. If I've lost any smelling ability, it hasn't been enough to be noticeable. I may experience this later, or maybe never.
Depression
This is another early non-motor symptom. Due to the changes in the brain, plus the news that one has a non-curable, progressively debilitating disease, is depression. Aside from making life seem dreary and hopeless, it can lead to suicide if it gets bad enough.
Thankfully I've not experienced much depression thus far. The only depression I've had in the last four years I know wasn't due to PD, and happened before PD symptoms set in. It's possible PD may have contributed to it, but it only lasted a month and I was able to exit the depression once I dealt with the actual issues underlying it.
Dystonia
This is a condition that can have several causes. It refers to a lack of muscle tone and stiffness in a limb or other parts of the body. It can be painful.
With PD induced dystonia, the lack of dopamine produces erratic signals to the muscle, causing it to be in a continual state of contractions. This produces stiffness and pain, and lack of usability of that limb.
I have this primarily in my left arm, and to some degree in my left leg/foot. When I'm focused on something physical, I also experience it in my mouth.
The last time I took a "holiday" from my Sinemet medication, in part to see how much symptoms had developed, by the end of five days my left arm was so stiff and in pain it was unusable for task like typing. Needless to say I won't be trying that again.
This is the first symptom I noticed back in 2012, though I didn't know what it was at the time. When I was driving, my left hand involuntarily clamped hard on the steering wheel, causing tightness and pain in my left hand. The second symptom was pain in my shoulder when bringing my left arm over my head for a swimming stroke. The third symptom I noticed toward the end of that year was difficulty in typing as smoothly and quickly with my left hand--the loss of fine motor control of the fingers. All those resulted from dystonia.
Currently I always feel some stiffness and pain in that arm, but it gets better during peak periods of my medication, and worse towards the beginning and ends of my doses (known as off times). Like right now I'm 20 minutes from taking my next Sinemet pill, and typing is slow and difficult, with a constant dull pain along my arm. Thankfully, though minor tremors have migrated to my right arm/hand, it hasn't developed any dystonia so far. Hopefully it stays that way for a few years.
This is why if you visit with me in person, you'll notice I stretch my left arm, hand, and fingers a lot, and rub them when it gets bad, as it seems to help.
Another way a PD patient can get dystonia is from the levadopa medication itself. It is a subset of dyskinesia which we'll talk about in a bit. With the infusion of dopamine through drugs, the central nervous system's connections with the brain get over excited. One result of this is repeated contractions of a body part.
For me it is toe curling, specifically my left foot toe next to my small toe. Consequently, unlike my left arm's dystonia, my left foot's dystonia gets worse during a peak dose of Sinemet. If I'm on my feet much, that left toe begins to hurt as it is constantly pushing into the floor or bottom of my shoe. Sometimes it causes me to limp.
As the disease progresses, the Sinemet becomes less effective and the affected limbs more painful.
Tremors
This is the classic symptom most people think of in relation to PD. Due to motor-control neurons mis-firing, because of the lack of dopamine in the brain, erratic signals are sent to certain muscle groups, causing them to jerk or do repetitive motions.
One common motion you'll see is called "pill rolling," as the thumb moves in a circular motion around the fingers as if rolling a pill between them. Not all PD patients do that. I've experienced it some in my left hand when tremors were bad, but it has been a while since I've done that mostly likely thanks to my medicine.
This was the fourth symptom I noticed late in 2012. My left hand developed mild tremors. Over the course of 2013, it became noticeably worse and led me to go see a doctor. By the end of 2013, I had been diagnosed and was on medication for it. About the middle of 2014, my right hand began to show signs of tremors, indicating the disease was spreading to my right side.
Aside from making some task more difficult, the tremors make typing more of a chore. Frequently, my left fingers will be resting on the keyboard, and a finger will twitch, causing involuntary keystrokes that usually don't belong on the page. That combined with the dystonia means when I type, I often do a lot of backspacing.
My medications currently keep my tremors under control most of the time, except during off-times: at the beginning and end of a dose. However, stress tends to bring them out in full force. Like the last time I was stopped by the police for a taillight being out. When he asked me for my ID, my arm and hand were shaking like a leaf in a strong wind. Even minor stress can uncover some tremors at times, like focusing on something intensely. For example, when I do Yoga or Pilates, my hands tend to tremor some.
Over time, the medications will become less effective, requiring more extreme measures like Deep Brain Stimulation surgery (a pacemaker for the brain). Eventually, if I live long enough, not much will keep me from tremoring away. That usually happens in the more advanced stages: 4 and 5.
Dyskinesia
This is another form of uncontrolled movement. It is not caused by PD itself, but is a side-effect from using levadopa therapy. Since taking dopamine straight will not get to the brain, thanks to the brain's blood barrier, the primary treatment for PD symptoms is using a precursor of dopamine, levadopa, which can cross the blood-brain barrier. It then gets converted to dopamine once inside.
By supplying the brain with additional dopamine, it helps to replace that which is missing due to cell death, allowing the brain to operate normally. It effectively reduces many PD symptoms, sometimes making the person feel perfectly normal again, especially in the early stages. I'm one of the more unlucky ones in that regard, in that it has never made me feel perfectly normal, but it does significantly reduce the intensity level of my symptoms.
However, as mentioned above, it also has the side-effect of over-exciting the brain and central nervous system's connections. This results in a different form of uncontrolled movements resulting not from the disease, but extended use of the medicine.
The average time a person might expect to see dyskinesia symptoms after starting levadopa therapy is around 6 years, so I've read. Usually it takes higher doses over a period of time before symptoms manifest.
Unfortunately for me, I've beat that average by a mile. I took some levadopa in 2013 for about one or two months. Then I was off it until restarting in January of 2014. In September of 2014, upon doubling my Sinemet dose (one form of levadopa commonly used), I experienced my first dyskinesia symptoms. So we dropped it back down at the end of September and the symptoms disappeared.
Then my new neurologist prescribed Azilect. It isn't levadopa, but inhibits the breakdown of dopamine in the brain so it builds up a bigger supply. In effect, it magnifies the effect of any levadopa one is taking. When we started the 0.5 mg/day dose, I noticed a reappearance of dyskinesia, but fairly minor and manageable. Since we've upped it to the 1 mg/day dose, the dyskinesia has become significantly worse.
The difference between these uncontrolled movements and tremors is that these are smoother and bigger, and not limited to my hands. The primary areas it affects are my head, causing it to bob around, my left calf muscle and foot, and a general wobbly feel in my whole body. It feels like someone is putting their hand on me and pushing it around. So a lot less jerky like tremors. It can also make one talk less smooth, sort of stuttering.
A good example of this symptom is Michael J. Fox. If you pull up any of his recent interviews on YouTube, especially between the time of 2000 - 2010, you'll see him wiggling around a lot. Recently they came out with medication that helps reduce those effects, and I believe he has been using it, so real recent interviews he's not quite as bad. The bad news is that medication generally only last around six months.
As I mentioned previously, another effect of this symptom is additional dystonia due to the uncontrolled movements. Currently, I experience that in my left toes and my neck, which tires when my head moves around too much.
Probably the hardest aspect of this symptom to deal with so far has been standing or being on my feet for long periods of time. The hardest of those tends to be at church when I'm on my feet without moving much for around three hours. My left leg gets very antsy, like restless leg syndrome, making it an endurance exercise at times. That combined with the pain in my left toe make for a "fun" service.
Currently I'm not as bad as what you'll see if you've seen Michael J. Fox. But I'm on the road to it unless some changes in my medications eliminate it.
Constipation
Ah, everyone's favorite subject. PD tends to make one more prone to constipation. Let's just say I've experienced some real struggles with this one. I used to treat it by eating a good supply of prunes every night, but found a magnesium supplement works quite well. I take a magnesium taurate supplement twice a day, which gives me 200 mg per day. Haven't had any problems with this for months.
Nuff said.
Bladder/Bowel Control
PD can affect how well a person can control their excretion processes. I've had more than one "accident" on both ends of the system. Sinemet seems to have helped, as has taking a good probiotic (PD patients tend to be missing whole families of bacteria in the gut).
My two biggest problems with this so far relates to the bladder. One, at times I've lost my early warning system. When I start feeling I need to go, I've got precious little time before it becomes desperate. This makes taking trips a real pain at times.
Two, there are times when I feel I need to go shortly after having gone. Sometimes it is a dribble, other times it is substantial. Oddly enough it tends to happen most when I'm working in the kitchen. One time making breakfast I had to stop what I was doing 5 times to go. Very annoying. But it comes and goes. Most of the time I don't have this problem.
Runny Nose (Rhinorrhea)
This is one symptom many doctors are not even aware of. Studies have shown that it affects around 50% of PD patients. It doesn't appear to be due to medications, but the disease itself. It too can be one of the early symptoms.
I first experienced this in September of 2012, shortly before my difficulty with typing set in. I caught what I believed was a cold, but after the cold symptoms disappeared, the runny nose stayed and has never gone totally away. At times it has been better, but currently I blow my nose several times a day.
Incidentally, earlier in 2012 I began having a chronic problem with boils. I discovered it was caused by an infection in the sinus cavities. After applying an antibiotic ointment for a period of time, the boils stopped. It wasn't long after that when the dystonia in the left hand began.
My doctor said the symptoms weren't related, that I likely had developed allergies and prescribed an antihistamine. It wasn't until last year that I discovered the above article and the link between the two.
Certain nasal sprays have reportedly helped.
Bradykinesia
This refers to slowness of movement and reduced movement. Unlike other symptoms of PD, this one is present in all cases. The most common examples are lack of swing in an arm while walking, slowness to initiate movements, and small handwriting.
I've experienced this symptom as well. My left arm doesn't swing well unless I consciously force it. My handwriting does have a tendency to shrink in size. There are times I feel like I'm moving through molasses and I'm slow to respond to stimuli.
I believe my medication has helped with this some, but it hasn't gone away.
Blank Face
This was an early symptom my brother noticed. Many PD patients tend to have an expressionless face, like they're not all there. It was also one of the first symptoms my neurologist noticed upon my first visit.
The important thing to know is that just because someone with PD has a blank face, it doesn't mean they've checked out. It is simply one symptom of PD where facial muscles have lost control.
Drooling
Nothing like drooling to make you feel you're reverting to your baby days. But it is a common symptom of PD. Obviously a little embarrassing in public.
I did have a period where I kept catching drool trying to escape from my mouth. My medications have kept it under control thus far, so you're not likely to see me drooling any time soon. But as medications become less effective, I'm sure it will be part of my future.
Dementia
Around 60% of PD patients experience dementia. Dementia isn't merely forgetting things, but loss of ability to recognize people or events, confusion in thinking, loss of cognitive functions, and hallucinations, among others.
To date, while I think some of my thinking processes have slowed, I've not exhibited any signs of dementia. But it tends to manifest itself in the later stages of PD, so I'm by no means out of the woods. Of the symptoms, this is probably the one I fear the most, not just for me, but for my wife who would be taking care of me.
So far, so good. Still a lot of this journey left to travel, though. All in God's hands.
Swallowing
Difficulty swallowing correctly is a fairly common PD symptom. Not so much in being able to swallow, but being able to swallow without getting liquid into your lungs. The flap that should cover the windpipe when you swallow doesn't work as expected.
One common result of this in advanced cases is the risk of pneumonia, and with it, possible death.
Normally I don't experience this. The only exception is when swallowing pills. It is common at least once when taking my supplements to get water down my windpipe. I've yet to have any problem with normal drinking, but it is likely a problem I'll deal with in the future.
Sleep Disruption
Many PD patients experience problems with sleeping. Common is the presence of tremors and dystonia pain makes falling asleep hard. Once asleep, those tend to disappear. It is the getting to sleep that can be a problem.
Another common sleep problem is the need to frequently go to the bathroom. Many PD patients find themselves waking up in the middle of the night frequently due to this. Then if symptoms make falling back asleep hard, it is a double whammy.
Likewise, some experience the opposite. Due to lack of energy some feel a need to sleep more than usual, leaving little time for productive task completion.
There are also studies showing that PD can negatively affect REM sleep, making one feel less rested after a night of sleep.
To date, I've rarely had trouble getting to sleep and getting enough. I've always been a good sleeper. So to date, I've escaped this symptom.
Weak Muscles
Frequently, PD tends to weaken the affected muscles. As the disease progresses, it gets worse.
I've noticed this to a degree. I find opening packages or unscrewing lids from jars to be much harder than it has been in the past. Scissors have become my best friend in that regard. I can still lift a decent amount of weight, but I've noticed in my left arm that ability has been reduced.
I've been doing more resistance exercises of late to help with that issue.
Balance Issues
Another critical problem among many PD patients is balance issues. As noted above, this is especially critical in stage 3 of the disease, when falling becomes more of a threat. At each visit, my neurologist ask if I've had any incidents of falling in the past few months. As I mentioned at the beginning, falling is one of the main ways PD patients experience injury, life-threatening complications, or even death.
I can tell my balance has been affected. I'm a little more unsteady on my feet than I used to be. To date, though, I've not had any real falls due to this. The only one that could be attributed to it, and it was more a matter of getting my feet tangled in a vacuum cleaner hose, was a slow, controlled fall, in part due to the table I tried to steady myself with not staying put, but slowly scooting out.
During Yoga and Pilates, we do some balance exercises. I currently find these difficult not to end up putting my foot down to keep from falling. I'm doing Tai Chi which is known for helping with this problem. Looks like when I get to phase 3, it will be an issue, unless my work now can head it off or reduce it. We'll see.
Summary
As I said, the above list isn't exhaustive. Each person may have other symptoms not listed. I may have forgotten even some of my own symptoms to mention. However, the above list should help to give you a clearer picture of what many PD patients face with this disease. It isn't just tremors that are the issue, but a whole range of issues.
My treatment plan involves exercise (currently Zumba, Pilates, Yoga, Tia Chi, lifting weights, and swimming), good nutrition, and a combination of supplements and prescribed medications. My symptoms would be much worse without them.
Feel free to subscribe to this blog (top right) using either RSS feed or email, if you wish to follow my journey with this disease. Thanks for reading.
Saturday, January 3, 2015
Day 1: Tauroursodeoxycholic Acid
I mentioned last time the experiment I'm going to do with TUDCA. The full name the abbreviation represents is in the title. Quite a mouthful. That's why I just use the abbreviation.
I received my bottle of it in the mail Friday, and as of writing this, have taken two doses, one 250mg pill around 2 pm, and one 250mg pill around 8 pm.
Before I get to any results thus far, I'll disclose what I'm currently taking and what my remaining symptoms are by which I'm gaging whether this will help me symptomatically or not. That, however would be only one reason to take it.
Currently, I'm taking 25/100mg of carbidopa/levadopa (generic Sinemet) 3 times a day. I've been taking that dose since January 2014. That helped symptoms significantly, but not completely. I still had considerable stiffness and pain in my left arm, and stiffness in my left leg. Tremors were still visible and when stress is applied, all those symptoms were magnified. But still, as I discovered in my one-week Sinemet holiday the first week of November, I would have been much more stiff and painful without it, to the point typing would be practically out of the question. By the end of that week I'd gone to a two-fingered typing approach, which was much slower but possible. Before I started taking my Sinemet again, even that was becoming too much of a chore.
About mid-November I started taking 0.5mg of Azilect. While sometimes it doesn't do a lot for symptoms, in my case it did significantly. Noticeably, my tremors are minimal (except apparently when I drink coffee) as is the stiffness in my arm and fingers. I'm not noticing any tremors in my right hand even though before I had developed a slight tremor in it as the disease progressed to my right side. I have periods of the day when it is better and worse, probably depending on my Sinemet schedule, which thanks to all the holidays has been messed up a good bit. Will get messed up again as we prepare for a trip next weekend. As mentioned last time, I'm now partway into 6 weeks of taking Azilect. Maximum benefit is supposed to be achieved within 4 to 8 weeks. So I'm in the later part of that range. In the last two weeks, I've not noticed any new improvement in symptoms, leading me to believe I've pretty much reached the maximum symptomatic benefit. If it is still improving, it is in very subtle ways I'm not able to detect.
I'm also taking a slew of supplements, mostly antioxidants, anti-inflammatory, and cognitive support. I won't bore you listing them all out. Mainly to say that I've not changed that in the last few weeks aside from adding in a probotic to the list to improve gut functioning. Interestingly enough, ran across a study indicating that PD patients tended to be missing a whole family of gut bacteria, so adding that was a good move. All that to say, however, that I've not recently added or changed any of my supplements that might account for any new changes upon taking TUCDA. Indeed, I also received a bottle of magnesium taurate, which will add tauramine to my body, something typically missing in PD brains compared to normal ones. But I'm holding off on it for at least three days to make sure any immediate changes can be linked more closely with adding in the TUDCA.
The only question mark is that it is possible the Azilect isn't finished, and could inject a new bursts of benefits coincidentally at the same time as the TUCDA is taken. Not very likely, but is possible.
My current symptoms not sucuming to my current medication and supplement routine are a mixture of remaining PD symptoms and minor dyskinesia symptoms. Dyskinesia is, by way of reminder, lack of motor control as a side-effect of using Levadopa in the body, which is mostly what Sinemet is. The more of it you take and the longer you take it, the worse those symptoms get.
PD Symptoms left:
Dyskinesia symptoms:
One symptom I've noticed of late, so I suspect it is a dyskinesia symptom, is embouchure tightening. Seems to happen mostly while I'm working to clean houses, I notice my lips drawing into a tight pull enough that it becomes uncomfortable. I have to keep forcing my mouth to relax.
Another symptom that's been unchanging through meds so far is balance. I've not fallen, but I feel decidedly more unsteady than I used to be. I'd say I've been that way through most of 2014, but it hasn't seemed to have gotten worse yet either. Just there, hanging on the edge. I can still balance on one foot, though. Just not as confidently.
What I'm not having any problem with to speak of, that I was before, is drooling and fuzzy thinking. Which is good.
That's where I stand, and what symptoms I'll be watching to see if they improve.
For day 1 on TUCDA, I had the following results.
Side-effects: Nothing I can detect.
Symptom changes: Nothing I can detect. Tremors and stiffness and all other symptoms appear unchanged.
Based on the lack of any nausea (the most common side-effect of this substance) and what I've read is a minimum effective dose, I'm going to double them for Saturday so I get a whole gram of the med in one day.
Some studies I've read upon which I'm basing the use of this drug as far as safety and effectiveness:
Efficacy and Tolerability of Tauroursodeoxycholic Acid in Amyotrophic Lateral Sclerosis
Safety, Tolerability, and Cerebrospinal Fluid Penetration of Ursodeoxycholic Acid in Patients With Amyotrophic Lateral Sclerosis
Oral Solubilized Ursodeoxycholic Acid Therapy in Amyotrophic Lateral Sclerosis: A Randomized Cross-Over Trial
You'll notice that most all the human clinical trials have been done in relation to ALS, not PD. While the parts of the brain that are dying in each disease is different, what this does show is the results in pre-clinical trials on cells and animals, does indeed translate over to human subjects using the same functional approach, halting/slowing cell death. It also shows the drug is safe to use. There are cases it can be a problem, usually involving diseased livers or gall bladders, but otherwise tolerated by most people.
What we don't know is whether it will prevent PD brain cell death as well as it prevents brain and nerve neuron death in ALS. If it does, and there doesn't seem to be any reason it won't, it would be the first substance to actually slow or stop the progression of PD. So even minus any symptomatic improvement, it may be wise to continue to take this for the possibility of helping me not to get any worse in the foreseeable future.
This was a long one, due to needing to spell out the backstory for disclosure. Future updates should just be what I'm experiencing with the drug. Until then.
I received my bottle of it in the mail Friday, and as of writing this, have taken two doses, one 250mg pill around 2 pm, and one 250mg pill around 8 pm.
Before I get to any results thus far, I'll disclose what I'm currently taking and what my remaining symptoms are by which I'm gaging whether this will help me symptomatically or not. That, however would be only one reason to take it.
Currently, I'm taking 25/100mg of carbidopa/levadopa (generic Sinemet) 3 times a day. I've been taking that dose since January 2014. That helped symptoms significantly, but not completely. I still had considerable stiffness and pain in my left arm, and stiffness in my left leg. Tremors were still visible and when stress is applied, all those symptoms were magnified. But still, as I discovered in my one-week Sinemet holiday the first week of November, I would have been much more stiff and painful without it, to the point typing would be practically out of the question. By the end of that week I'd gone to a two-fingered typing approach, which was much slower but possible. Before I started taking my Sinemet again, even that was becoming too much of a chore.
About mid-November I started taking 0.5mg of Azilect. While sometimes it doesn't do a lot for symptoms, in my case it did significantly. Noticeably, my tremors are minimal (except apparently when I drink coffee) as is the stiffness in my arm and fingers. I'm not noticing any tremors in my right hand even though before I had developed a slight tremor in it as the disease progressed to my right side. I have periods of the day when it is better and worse, probably depending on my Sinemet schedule, which thanks to all the holidays has been messed up a good bit. Will get messed up again as we prepare for a trip next weekend. As mentioned last time, I'm now partway into 6 weeks of taking Azilect. Maximum benefit is supposed to be achieved within 4 to 8 weeks. So I'm in the later part of that range. In the last two weeks, I've not noticed any new improvement in symptoms, leading me to believe I've pretty much reached the maximum symptomatic benefit. If it is still improving, it is in very subtle ways I'm not able to detect.
I'm also taking a slew of supplements, mostly antioxidants, anti-inflammatory, and cognitive support. I won't bore you listing them all out. Mainly to say that I've not changed that in the last few weeks aside from adding in a probotic to the list to improve gut functioning. Interestingly enough, ran across a study indicating that PD patients tended to be missing a whole family of gut bacteria, so adding that was a good move. All that to say, however, that I've not recently added or changed any of my supplements that might account for any new changes upon taking TUCDA. Indeed, I also received a bottle of magnesium taurate, which will add tauramine to my body, something typically missing in PD brains compared to normal ones. But I'm holding off on it for at least three days to make sure any immediate changes can be linked more closely with adding in the TUDCA.
The only question mark is that it is possible the Azilect isn't finished, and could inject a new bursts of benefits coincidentally at the same time as the TUCDA is taken. Not very likely, but is possible.
My current symptoms not sucuming to my current medication and supplement routine are a mixture of remaining PD symptoms and minor dyskinesia symptoms. Dyskinesia is, by way of reminder, lack of motor control as a side-effect of using Levadopa in the body, which is mostly what Sinemet is. The more of it you take and the longer you take it, the worse those symptoms get.
PD Symptoms left:
- Minor tremors in left fingers, gets worse under stress and can tremor the whole hand/arm.
- Stiffness in left arm and leg. Currently not much pain with it. On a scale of 1 to 10, 10 being bad pain, I'd say it is around a 2 in my left arm.
- Due to stiffness in my left arm and leg, my gait is affected. I walk differently. In this, it seems the Sinemet nor Azilect have had much of an affect on.
- Sometimes when I swallow, only noticed when swallowing pills, my throat won't work right and I'll get water down my wind pipe. Usually happens at least once when taking my array of supplements in the morning and night.
- Less energy than I used to have. Not always as bad, but there are times I seem to run out and my movements get slow and draggy.
- My left toes want to curl under. Most noticeable when I'm standing or working on my feet. If I'm on them for 3 hours or more, it can hurt as the tips of some of my toes are constantly pushing down on the floor. This is also a symptom which Sinemet only helped a bit and Azilect hasn't seemed to do anything for me.
- Minor constipation. Mostly kept in check with my magnesium supplement. Before that, it tended to be the battle of the bulge, if you get my drift.
- Some "cogwheel" difficulties with my left hand. Associated with Bradykinesia (slowness of movement), it refers to lack of smoothness in hand motion, as if when going in a circle your hand acts like a cogwheel, creating jerky movements slowly. The Sinement and Azilect has helped that enough that I was able to use my left hand to cut my hair with the Flowbie last time, when prior to Azilect it was too difficult. But it is still present, just better than its been in many a month.
Dyskinesia symptoms:
- Slight head movement, like something is pulling my head down at times.
- Some antsiness in my left leg, such that if I stand for more than a couple hours, it wants to stop holding me up. So it wants to wiggle around.
- My dyskinesia like I had before, doesn't include rocking back and forth while standing this time. Hasn't become that bad yet.
One symptom I've noticed of late, so I suspect it is a dyskinesia symptom, is embouchure tightening. Seems to happen mostly while I'm working to clean houses, I notice my lips drawing into a tight pull enough that it becomes uncomfortable. I have to keep forcing my mouth to relax.
Another symptom that's been unchanging through meds so far is balance. I've not fallen, but I feel decidedly more unsteady than I used to be. I'd say I've been that way through most of 2014, but it hasn't seemed to have gotten worse yet either. Just there, hanging on the edge. I can still balance on one foot, though. Just not as confidently.
What I'm not having any problem with to speak of, that I was before, is drooling and fuzzy thinking. Which is good.
That's where I stand, and what symptoms I'll be watching to see if they improve.
For day 1 on TUCDA, I had the following results.
Side-effects: Nothing I can detect.
Symptom changes: Nothing I can detect. Tremors and stiffness and all other symptoms appear unchanged.
Based on the lack of any nausea (the most common side-effect of this substance) and what I've read is a minimum effective dose, I'm going to double them for Saturday so I get a whole gram of the med in one day.
Some studies I've read upon which I'm basing the use of this drug as far as safety and effectiveness:
Efficacy and Tolerability of Tauroursodeoxycholic Acid in Amyotrophic Lateral Sclerosis
Safety, Tolerability, and Cerebrospinal Fluid Penetration of Ursodeoxycholic Acid in Patients With Amyotrophic Lateral Sclerosis
Oral Solubilized Ursodeoxycholic Acid Therapy in Amyotrophic Lateral Sclerosis: A Randomized Cross-Over Trial
You'll notice that most all the human clinical trials have been done in relation to ALS, not PD. While the parts of the brain that are dying in each disease is different, what this does show is the results in pre-clinical trials on cells and animals, does indeed translate over to human subjects using the same functional approach, halting/slowing cell death. It also shows the drug is safe to use. There are cases it can be a problem, usually involving diseased livers or gall bladders, but otherwise tolerated by most people.
What we don't know is whether it will prevent PD brain cell death as well as it prevents brain and nerve neuron death in ALS. If it does, and there doesn't seem to be any reason it won't, it would be the first substance to actually slow or stop the progression of PD. So even minus any symptomatic improvement, it may be wise to continue to take this for the possibility of helping me not to get any worse in the foreseeable future.
This was a long one, due to needing to spell out the backstory for disclosure. Future updates should just be what I'm experiencing with the drug. Until then.
Friday, December 5, 2014
Azilect Results
Last time I indicated that my new neurologist had prescribed Azilect, a MAO-B inhibitor, to add to my Sinemet medication. I also mentioned, due to the high cost of the medication (the $600/month bill I mentioned last time was for the 1 mg pill, I was prescribed the 0.5 mg pill, so more like $300/month), I was applying for patient assistance from the company that makes the medication, Teva.
The good news is I was approved and received the medication. As of yesterday, Thursday, I will have been on it for 2 weeks. According to the documentation from the company, I can expect to see maximum results within 4 to 8 weeks. One person on my PD support group reported noticing benefits at 2 weeks. So I thought this would be a good time to give a preliminary report on how it is going.
First, I'll mention side-effects. If side effects are bad, it can offset the benefits of the med.. Like the dopamine agonist I was on earlier this year made me feel drowsy all the time. Not really sleepy, but like there was an edge of mental dullness all the time.
Thankfully, the side-effects have been minimal. For the first week, I experienced a slight stomach discomfort around 1 to 3 hours after taking it. One common side-effect is nausea. My discomfort was minimal, and I never felt nauseous. It didn't last long, and didn't really bother me. I just noticed it. The second week, I've not even noticed any discomfort. So that's good. Some people have to give it up because it is too much for them.
A second side effect is some increase in dyskenesia, uncontrolled movements brought on by too much or prolonged L-dopa useage as I get in Sinemet. You'll recall when my previous neurologist doubled my Sinemet dose, it produced some of those effects: rocking motion while standing, weak/antsy left leg, head movement, and my right-hand doing multiple mouse clicks with one click (that did end up being due to the increase in Sinemet, it just didn't disappear as quickly when I went back to my previous dose like the other symptoms).
Some of those have returned, but not as severe as before. At least, so far, it is manageable, and probably not as noticeable by others. My wife hasn't commented on noticing my head moving like before, for instance, though I can feel it moving some at times.
Probably the most annoying side-effect has been related to the dyskenesia. At least I think it is. I didn't experience this last time, so I'm not sure. But when I try to go to sleep, my left arm starts wanting to tremor/vibrate. To the point I was having trouble falling asleep. PD tremors go away while you're sleeping, so once asleep they usually don't wake you up. But until this point, they would calm down enough as I was drifting off to sleep that I didn't have trouble falling asleep. Now, upon taking this medication, I would start to fall asleep, but then my mind would wake up a bit, and as a result the tremors would start up. A couple of nights I had trouble getting to sleep, and a few nights I would wake up after 3-4 hours of sleep, and then not be able to get back to sleep because of it.
My main tactic was to stretch and rub my arm for a bit. That would usually calm it down for a few seconds, hopefully enough time for me to drift off to sleep. What I found most helpful was saying the Jesus prayer as I breathed in and out, "Lord Jesus Christ, Son of God, have mercy on me, a sinner." It not only helped to calm me down, but gave my mind something else to focus on to distract it from thinking about the tremors.
The second week was better in that regard too. I've not had nearly as much trouble getting to sleep, though sometimes I do notice my arm being more tremory as I'm falling asleep. I'm also not waking up part way into the night anymore.
So all in all, the side-effects haven't been too bad, and mostly have gone away after the first week.
So have I noticed any improvements yet? Some. It hasn't been drastic, but a couple of things I've noticed have improved.
One, I seem to have more periods of time that typing is easier. Like right now, my left arm is stiff and hurting a bit as I type. That seemed to be the norm with just the Sinemet alone. But now I have more times when it isn't as bad, and my speed picks up a good bit. Occasionally it almost feels normal. Hopefully in the next few weeks, that will improve even more.
Two, the tooth brushing test. This year, I've noticed my right arm being affected by PD more. It currently tremors slightly, but hasn't yet felt a lot of stiffness nor had trouble typing, thankfully. Obviously it will get there eventually. But the one area I've noticed the most with my right arm is in brushing my teeth. It feels like my hand starts running away with the brush stokes, like a runaway train. Especially, for some reason, brushing my right teeth. In these last two weeks, I've noticed some control returning to my brushing.
So it is helping. In the next 2-6 weeks, I should know more fully how beneficial it will be. Good news so far. And on top of that, I get the med for free as long as I qualify for their program. Can't beat that. I'll try and update you on that in a few weeks, probably after Christmas.
Before then, however, I want to post about my drug holiday I did three weeks ago, and where my symptoms are at now. Then we'll see what 2015 has in store for me. Until then, Alonzo!
The good news is I was approved and received the medication. As of yesterday, Thursday, I will have been on it for 2 weeks. According to the documentation from the company, I can expect to see maximum results within 4 to 8 weeks. One person on my PD support group reported noticing benefits at 2 weeks. So I thought this would be a good time to give a preliminary report on how it is going.
First, I'll mention side-effects. If side effects are bad, it can offset the benefits of the med.. Like the dopamine agonist I was on earlier this year made me feel drowsy all the time. Not really sleepy, but like there was an edge of mental dullness all the time.
Thankfully, the side-effects have been minimal. For the first week, I experienced a slight stomach discomfort around 1 to 3 hours after taking it. One common side-effect is nausea. My discomfort was minimal, and I never felt nauseous. It didn't last long, and didn't really bother me. I just noticed it. The second week, I've not even noticed any discomfort. So that's good. Some people have to give it up because it is too much for them.
A second side effect is some increase in dyskenesia, uncontrolled movements brought on by too much or prolonged L-dopa useage as I get in Sinemet. You'll recall when my previous neurologist doubled my Sinemet dose, it produced some of those effects: rocking motion while standing, weak/antsy left leg, head movement, and my right-hand doing multiple mouse clicks with one click (that did end up being due to the increase in Sinemet, it just didn't disappear as quickly when I went back to my previous dose like the other symptoms).
Some of those have returned, but not as severe as before. At least, so far, it is manageable, and probably not as noticeable by others. My wife hasn't commented on noticing my head moving like before, for instance, though I can feel it moving some at times.
Probably the most annoying side-effect has been related to the dyskenesia. At least I think it is. I didn't experience this last time, so I'm not sure. But when I try to go to sleep, my left arm starts wanting to tremor/vibrate. To the point I was having trouble falling asleep. PD tremors go away while you're sleeping, so once asleep they usually don't wake you up. But until this point, they would calm down enough as I was drifting off to sleep that I didn't have trouble falling asleep. Now, upon taking this medication, I would start to fall asleep, but then my mind would wake up a bit, and as a result the tremors would start up. A couple of nights I had trouble getting to sleep, and a few nights I would wake up after 3-4 hours of sleep, and then not be able to get back to sleep because of it.
My main tactic was to stretch and rub my arm for a bit. That would usually calm it down for a few seconds, hopefully enough time for me to drift off to sleep. What I found most helpful was saying the Jesus prayer as I breathed in and out, "Lord Jesus Christ, Son of God, have mercy on me, a sinner." It not only helped to calm me down, but gave my mind something else to focus on to distract it from thinking about the tremors.
The second week was better in that regard too. I've not had nearly as much trouble getting to sleep, though sometimes I do notice my arm being more tremory as I'm falling asleep. I'm also not waking up part way into the night anymore.
So all in all, the side-effects haven't been too bad, and mostly have gone away after the first week.
So have I noticed any improvements yet? Some. It hasn't been drastic, but a couple of things I've noticed have improved.
One, I seem to have more periods of time that typing is easier. Like right now, my left arm is stiff and hurting a bit as I type. That seemed to be the norm with just the Sinemet alone. But now I have more times when it isn't as bad, and my speed picks up a good bit. Occasionally it almost feels normal. Hopefully in the next few weeks, that will improve even more.
Two, the tooth brushing test. This year, I've noticed my right arm being affected by PD more. It currently tremors slightly, but hasn't yet felt a lot of stiffness nor had trouble typing, thankfully. Obviously it will get there eventually. But the one area I've noticed the most with my right arm is in brushing my teeth. It feels like my hand starts running away with the brush stokes, like a runaway train. Especially, for some reason, brushing my right teeth. In these last two weeks, I've noticed some control returning to my brushing.
So it is helping. In the next 2-6 weeks, I should know more fully how beneficial it will be. Good news so far. And on top of that, I get the med for free as long as I qualify for their program. Can't beat that. I'll try and update you on that in a few weeks, probably after Christmas.
Before then, however, I want to post about my drug holiday I did three weeks ago, and where my symptoms are at now. Then we'll see what 2015 has in store for me. Until then, Alonzo!
Wednesday, November 12, 2014
New Doc Update
I saw a new neurologist Monday, here in Marble Falls. Bottom line, I'm happy with him. Not only is he in town, so no more 2 hour drives each way to Temple, but he has dealt with this for a long time, was knowledgeable on recent developments, did more tests, and is considering more options than my previous neurologist.
By way of example, my previous neurologist didn't have MAO-B inhibitors on her "go to" medications. She said because she didn't feel the benefits to side-effect ratio was good. She pointed to diet restrictions as evidence of a difficulty using them.
MAO inhibitors essentially inhibit the production of an enzyme. MAO-A inhibitors are used in psychotic diseases and have significant diet restrictions to avoid the chemical tyrosine, which can cause hypertensive reactions among other issues when MAO-A is present at the same time. MAO-B inhibitors, however, don't have those restrictions on diet. But when they came out, the FDA automatically gave them the same restrictions as MAO-A inhibitors. Later, as evidence was accumulated that the B version didn't have the same risks as the A one, the FDA relaxed the dietary requirements on MAO-B inhibitors. By inhibiting the MAO-B enzyme, which breaks down dopamine in the body to get rid of older dopamine molecules, it allows the dopamine in your system to hang around longer. That makes any dopamine produced by your brain cells still alive to work longer, as well as any taken in the form of Sinemet--the main drug used in PD.
One MAO-B inhibitor has been around for a while. At one point it was thought to have neuro-protective action, but was not proven to be true in the end. However, 10 years ago a new form came out with the brand name Azilect. It has shown evidence of slowing down the progression of PD. The first med to do so. All others treat symptoms only.
There is your PD lesson for the day. All that to point out that my previous neurologist didn't appear to know about MAO-B inhibitors not having the same diet restrictions as the A version. It was obvious she wasn't going to prescribe any of those. I thought we should at least give them a try and see, but she didn't seem to be open to doing that.
Not so with the new neurologist. He first went through a list of meds and asked me whether I'd taken any of them. The list was longer than I expected, and I could say no to them all because the only ones I'd had was Sinemet and a dopamine agonist. Then he ended that by giving me a history of PD meds, like what I'd read and given above, and ended that he'd like to prescribe Azilect for me. I didn't even have to bring any of it up. And through his presentation he described the diet restriction issue that I've detailed above.
The result being he has been dealing with this since the 60s, knows his stuff, and is open to finding the best med mix among a wide array of options instead of the narrow range of the previous neurologist. And he is not only willing to prescribe a MAO-B inhibitor, he brought it up as the first option to try. So I'm feeling a lot more confident that he can help me.
The down side is that Azilect is still under patent, which expires in Feb. 2017. Until then, there is no generic equivalent. Which means the medication is expensive. Looking on line, a 30 day supply retails just over $600, and with discounts will go anywhere from the upper $400s to the lower $500s. IOW, a month's supply would be more than our car payment.
Upon telling him I didn't have insurance to cover that, he pointed me to the company who has patient assistance programs. After searching, I found the qualifications and form to submit, which based on their info I should qualify for, I can get it for free. So I've filled out the form and sent it to the neurologist, he's filled in his part. I'll pick it up today and fax it into the company with my proof of income. Not sure how fast they'll process it and I'll get it if approved, but I'm hoping I'll have it by the end of next week. We'll see.
Aside from that, he confirmed the previous neurologist's diagnosis that I have PD. He said something along the lines of me fitting the standard characteristics, so for him, there is no doubt that this is PD, and not some other disease that mimics PD symptoms.
So it appears I'll get to try out this med and see how much it helps. I'll keep you updated. I'm going back to see him again in February.
Until I have more info . . . bye.
By way of example, my previous neurologist didn't have MAO-B inhibitors on her "go to" medications. She said because she didn't feel the benefits to side-effect ratio was good. She pointed to diet restrictions as evidence of a difficulty using them.
MAO inhibitors essentially inhibit the production of an enzyme. MAO-A inhibitors are used in psychotic diseases and have significant diet restrictions to avoid the chemical tyrosine, which can cause hypertensive reactions among other issues when MAO-A is present at the same time. MAO-B inhibitors, however, don't have those restrictions on diet. But when they came out, the FDA automatically gave them the same restrictions as MAO-A inhibitors. Later, as evidence was accumulated that the B version didn't have the same risks as the A one, the FDA relaxed the dietary requirements on MAO-B inhibitors. By inhibiting the MAO-B enzyme, which breaks down dopamine in the body to get rid of older dopamine molecules, it allows the dopamine in your system to hang around longer. That makes any dopamine produced by your brain cells still alive to work longer, as well as any taken in the form of Sinemet--the main drug used in PD.
One MAO-B inhibitor has been around for a while. At one point it was thought to have neuro-protective action, but was not proven to be true in the end. However, 10 years ago a new form came out with the brand name Azilect. It has shown evidence of slowing down the progression of PD. The first med to do so. All others treat symptoms only.
There is your PD lesson for the day. All that to point out that my previous neurologist didn't appear to know about MAO-B inhibitors not having the same diet restrictions as the A version. It was obvious she wasn't going to prescribe any of those. I thought we should at least give them a try and see, but she didn't seem to be open to doing that.
Not so with the new neurologist. He first went through a list of meds and asked me whether I'd taken any of them. The list was longer than I expected, and I could say no to them all because the only ones I'd had was Sinemet and a dopamine agonist. Then he ended that by giving me a history of PD meds, like what I'd read and given above, and ended that he'd like to prescribe Azilect for me. I didn't even have to bring any of it up. And through his presentation he described the diet restriction issue that I've detailed above.
The result being he has been dealing with this since the 60s, knows his stuff, and is open to finding the best med mix among a wide array of options instead of the narrow range of the previous neurologist. And he is not only willing to prescribe a MAO-B inhibitor, he brought it up as the first option to try. So I'm feeling a lot more confident that he can help me.
The down side is that Azilect is still under patent, which expires in Feb. 2017. Until then, there is no generic equivalent. Which means the medication is expensive. Looking on line, a 30 day supply retails just over $600, and with discounts will go anywhere from the upper $400s to the lower $500s. IOW, a month's supply would be more than our car payment.
Upon telling him I didn't have insurance to cover that, he pointed me to the company who has patient assistance programs. After searching, I found the qualifications and form to submit, which based on their info I should qualify for, I can get it for free. So I've filled out the form and sent it to the neurologist, he's filled in his part. I'll pick it up today and fax it into the company with my proof of income. Not sure how fast they'll process it and I'll get it if approved, but I'm hoping I'll have it by the end of next week. We'll see.
Aside from that, he confirmed the previous neurologist's diagnosis that I have PD. He said something along the lines of me fitting the standard characteristics, so for him, there is no doubt that this is PD, and not some other disease that mimics PD symptoms.
So it appears I'll get to try out this med and see how much it helps. I'll keep you updated. I'm going back to see him again in February.
Until I have more info . . . bye.
Tuesday, October 21, 2014
Medication Change Results
Last time I indicated that my doctor and I believed the increase dosage of Sinemet was causing some side effects. So almost 2 weeks ago, I went back to taking only one pill three times a day. Following are the results.
On my head movement, I don't feel like I'm doing it as much. My wife said she hadn't noticed it much since cutting back. So the increased Sinemet did appear to be causing that.
On my standing issues, both feeling a need to rock back and forth and my restless/weak left leg that protested at holding me up, have fallen away. I stood for 3 hours in church last Sunday. While my feet were tired (normal) and I could feel some toe curling fatigue, it was nothing like its been for the previous 4 weeks. By the end of the service I was putting normal pressure on my left leg without much protest. I realized at times during the service when before it would usually be bad, that I wasn't even thinking about it.
The only thing that hasn't gotten better is the multiple-clicks on the mouse. Maybe a little better, but still there. Like today I clicked in Firefox to open a new tab--I got 3 of them. But I'm learning new shortcut keys, like Ctrl-W closes a tab. So that symptom is due to the progression of PD in my right hand. So far, no difficulties typing with that hand, but I'm sure it is coming.
So most of those did come from the increasing of the Sinemet. They would be considered dyskinesia. Which I thought I'd need to be on Sinemet much longer and at higher doses before I experienced that. I guess not.
I'm sticking with my original dose until I see my new neurologist on Nov. 10th. There are other options, including adding Requip back into the mix, though I'm hoping he'll be open to giving a MAO inhibitor a try first. Until then, putting up with the extra pain and tremors at the lower dose.
That's the scoop for the time being.
On my head movement, I don't feel like I'm doing it as much. My wife said she hadn't noticed it much since cutting back. So the increased Sinemet did appear to be causing that.
On my standing issues, both feeling a need to rock back and forth and my restless/weak left leg that protested at holding me up, have fallen away. I stood for 3 hours in church last Sunday. While my feet were tired (normal) and I could feel some toe curling fatigue, it was nothing like its been for the previous 4 weeks. By the end of the service I was putting normal pressure on my left leg without much protest. I realized at times during the service when before it would usually be bad, that I wasn't even thinking about it.
The only thing that hasn't gotten better is the multiple-clicks on the mouse. Maybe a little better, but still there. Like today I clicked in Firefox to open a new tab--I got 3 of them. But I'm learning new shortcut keys, like Ctrl-W closes a tab. So that symptom is due to the progression of PD in my right hand. So far, no difficulties typing with that hand, but I'm sure it is coming.
So most of those did come from the increasing of the Sinemet. They would be considered dyskinesia. Which I thought I'd need to be on Sinemet much longer and at higher doses before I experienced that. I guess not.
I'm sticking with my original dose until I see my new neurologist on Nov. 10th. There are other options, including adding Requip back into the mix, though I'm hoping he'll be open to giving a MAO inhibitor a try first. Until then, putting up with the extra pain and tremors at the lower dose.
That's the scoop for the time being.
Saturday, October 11, 2014
Medication change
As I last reported back in September 10th, my neurologist increased my Sinemet dose to double what I was taking, since my symptoms had gradually increased. She also seemed a bit puzzled that my current dosage wasn't helping any more than it was. But since it was helping, she figured we could up the dose and see if that got rid of the symptoms better.
It has been just a little over a month, and here is how it has worked.
On the positive side, the increase dosage did help my dystonia (pain stiffness in my left arm and leg) and reduction in tremors. Didn't totally erase it, but did improve it considerably.
However, other symptoms started after increasing the dose. Some I thought was just the progression of PD, but their quick advancement happening right after the dose increase made me wonder if they were more due to side-effects of the medication. Those symptoms include:
1. My head started moving around more. Lenita noticed it, and I could tell. I noticed too at church, standing up, that my whole body wanted to rock back and forth. It felt like dykensia, like what Michael J. Fox has, which is a side-effect from taking Sinemet. But that usually only shows up on higher levels of the medications and after a few years. It shouldn't be happening yet to me.
2. My left leg started feeling antsy and weak. I really noticed this at church.
For those not familiar, we stand through most of our worship. Those that need to can sit, but mostly we stand. Especially me since I'm a reader and start reading and chanting the first service (equivalent to Matins) which takes about an hour and fifteen minutes, then I'm in the choir singing for another 2-2.15 hours for the main service. That's a total of standing and singing for 3 hours every Sunday morning. Been doing this since 1996 without too much problems.
The last three Sundays, my left leg has been giving me problems. I'm noticing it by the time the second service starts, and by the time the homily comes and I get my one chance to sit down, my left leg is feeling all wobbly and weak, and muscles are restless. I made it through the last service only by favoring my right leg. Seems if I take pressure off the left leg, it helps calm it down. But as that gets worse, my right leg will tire out faster too. If it doesn't get better, I may have to start chanting in a chair or something.
This past week, on Wednesday, I noticed the same thing happening as I started cleaning the first house. It gradually got better, though. I think moving helps it, instead of standing in one place like I do on Sunday mornings.
3. This one is the most annoying. You may recall I mentioned earlier this year that my right hand was slightly tremoring and feeling stiff, and if it followed my left hand's progression, I would be having difficulty typing with it by November.
Not too long after upping my dose, I started to have trouble accidentally double and triple clicking the mouse on my computer. For all the world it feels like I just click it once, but it does a multiple click.
One time I clicked on the file manager icon, and it opened up five copies of it. Like, I don't even see how it could have clicked it that many times in the fraction of a second I press on the button. But obviously my pressure on the button isn't constant. I've noticed this too when I'm trying to mark text, and it stops marking it and tries to move it.
When I right-click to bring up a context menu, I have to be aware of any clickable links behind my menu selection, because chances are I'll activate them too. I've accidentally closed more than one program.
I've compensated by lowering the double-click window time, but since the multiple clicks happen so fast, all that's ended up doing is making it hard to intentionally double-click something. Instead, I've learned and used a lot more shortcut keys for functions, and put in shortcut keys to start programs (I had to learn how to do that in Openbox, my Linux desktop control program, not as easy as in Windows).
That said, so far I've not noticed any significant loss of motor function in my right hand. It still types fine and works smoothly, unlike my left. If it's doing that good by November, it will be doing better than my left hand did in its progression. It is just this accidental double-clicking that has started this month. While it could be due to PD progression, it is curious it started about the time I increased my dose.
So this past Wednesday night, I sent a message to my neurologist about the new symptoms. She recommended I go back to the earlier dosage for now. In the next couple of weeks, I should be able to tell if the above symptoms go away, meaning they were due to the medication and not PD itself. Or I may discover that some of them are due to PD progressing as well. Well see.
The down side if the medication is causing these new symptoms is that this medication is the primary one for treating PD. There are others, but tend to only be effective in the earlier stages. Eventually for most PD patients, they end up on high doses of Sinemet despite the dyskenesia symptoms it creates, because the pain of not being on it is worse than the side effects of the medication. That I may be having those symptoms at such a low dose and early stage isn't good news.
I've gone back to my old dosage for a day and a half now. I can feel the stiffness and pain in my arm more, but it is bearable. Hard to tell if the above symptoms have lessened or not. Might notice something this Sunday, but more likely it won't be noticeable until next Sunday, as it takes about a week for the dopamine levels to adjust to the new level in the body.
Next neurology meeting is Nov. 10th, a month away. Plan is to maintain my old dose level for the next month, see how that goes, discuss options with the new doctor, and hopefully come up with a new plan. If in two weeks the above symptoms persist, then it might indicate a progression in the PD itself.
Fun, fun fun. Not. But it is what it is. I figure God has some lessons to teach me through this. One, I'm sure, is to learn how to depend on Him more, and this broken jar of clay, less.
It has been just a little over a month, and here is how it has worked.
On the positive side, the increase dosage did help my dystonia (pain stiffness in my left arm and leg) and reduction in tremors. Didn't totally erase it, but did improve it considerably.
However, other symptoms started after increasing the dose. Some I thought was just the progression of PD, but their quick advancement happening right after the dose increase made me wonder if they were more due to side-effects of the medication. Those symptoms include:
1. My head started moving around more. Lenita noticed it, and I could tell. I noticed too at church, standing up, that my whole body wanted to rock back and forth. It felt like dykensia, like what Michael J. Fox has, which is a side-effect from taking Sinemet. But that usually only shows up on higher levels of the medications and after a few years. It shouldn't be happening yet to me.
2. My left leg started feeling antsy and weak. I really noticed this at church.
For those not familiar, we stand through most of our worship. Those that need to can sit, but mostly we stand. Especially me since I'm a reader and start reading and chanting the first service (equivalent to Matins) which takes about an hour and fifteen minutes, then I'm in the choir singing for another 2-2.15 hours for the main service. That's a total of standing and singing for 3 hours every Sunday morning. Been doing this since 1996 without too much problems.
The last three Sundays, my left leg has been giving me problems. I'm noticing it by the time the second service starts, and by the time the homily comes and I get my one chance to sit down, my left leg is feeling all wobbly and weak, and muscles are restless. I made it through the last service only by favoring my right leg. Seems if I take pressure off the left leg, it helps calm it down. But as that gets worse, my right leg will tire out faster too. If it doesn't get better, I may have to start chanting in a chair or something.
This past week, on Wednesday, I noticed the same thing happening as I started cleaning the first house. It gradually got better, though. I think moving helps it, instead of standing in one place like I do on Sunday mornings.
3. This one is the most annoying. You may recall I mentioned earlier this year that my right hand was slightly tremoring and feeling stiff, and if it followed my left hand's progression, I would be having difficulty typing with it by November.
Not too long after upping my dose, I started to have trouble accidentally double and triple clicking the mouse on my computer. For all the world it feels like I just click it once, but it does a multiple click.
One time I clicked on the file manager icon, and it opened up five copies of it. Like, I don't even see how it could have clicked it that many times in the fraction of a second I press on the button. But obviously my pressure on the button isn't constant. I've noticed this too when I'm trying to mark text, and it stops marking it and tries to move it.
When I right-click to bring up a context menu, I have to be aware of any clickable links behind my menu selection, because chances are I'll activate them too. I've accidentally closed more than one program.
I've compensated by lowering the double-click window time, but since the multiple clicks happen so fast, all that's ended up doing is making it hard to intentionally double-click something. Instead, I've learned and used a lot more shortcut keys for functions, and put in shortcut keys to start programs (I had to learn how to do that in Openbox, my Linux desktop control program, not as easy as in Windows).
That said, so far I've not noticed any significant loss of motor function in my right hand. It still types fine and works smoothly, unlike my left. If it's doing that good by November, it will be doing better than my left hand did in its progression. It is just this accidental double-clicking that has started this month. While it could be due to PD progression, it is curious it started about the time I increased my dose.
So this past Wednesday night, I sent a message to my neurologist about the new symptoms. She recommended I go back to the earlier dosage for now. In the next couple of weeks, I should be able to tell if the above symptoms go away, meaning they were due to the medication and not PD itself. Or I may discover that some of them are due to PD progressing as well. Well see.
The down side if the medication is causing these new symptoms is that this medication is the primary one for treating PD. There are others, but tend to only be effective in the earlier stages. Eventually for most PD patients, they end up on high doses of Sinemet despite the dyskenesia symptoms it creates, because the pain of not being on it is worse than the side effects of the medication. That I may be having those symptoms at such a low dose and early stage isn't good news.
I've gone back to my old dosage for a day and a half now. I can feel the stiffness and pain in my arm more, but it is bearable. Hard to tell if the above symptoms have lessened or not. Might notice something this Sunday, but more likely it won't be noticeable until next Sunday, as it takes about a week for the dopamine levels to adjust to the new level in the body.
Next neurology meeting is Nov. 10th, a month away. Plan is to maintain my old dose level for the next month, see how that goes, discuss options with the new doctor, and hopefully come up with a new plan. If in two weeks the above symptoms persist, then it might indicate a progression in the PD itself.
Fun, fun fun. Not. But it is what it is. I figure God has some lessons to teach me through this. One, I'm sure, is to learn how to depend on Him more, and this broken jar of clay, less.
Wednesday, September 10, 2014
Doctor Visit Results
Quick update after seeing my neurologist Monday morning.
One, she updated my meds. Didn't like the one medication I showed her. She said it wasn't in her "go to medications" because she felt the beneficial affect it could have didn't tend to deliver enough "punch" in exchange for the potential negative side effects. I didn't argue with her, though I'd heard/read some good things about it. Most of it anecdotal and not proven, though. I've also read a lot of doctors aren't read up on it too, and this may have been the case as she seemed to think it would require dietary restrictions when everything I've read from reputable sources say at normal doses, it doesn't require it because it inhibits MAO-B, not MAO-A which does have those restrictions. She didn't seem to be aware of that difference.
At any rate, our new med plan is my Sinemet has been doubled. Instead of taking one pill 3 times a day, I'll take two 3 times a day. Then if in 2 months I still feel I need more help, I can contact her and she re-prescribe the Ropinerole that was helping earlier this year.
Into day 2 of taking the double dose, I can tell it is helping. Less stiffness in my left arm. Still not normal, but I'll give it a week or two to build up before I decide whether I need more help.
But I got some good news! Currently I have an hour and a half drive each way to go see this neurologist. She said she recalled seeing an email about a new neurologist in the Marble Falls facility they are building. She checked, got his name, and I said I'd like to try him out. So I ended up with an appointment to see him on Nov. 10th.
This will really be helpful, since he'll only be about 10 minutes away. Saves gas money and taking up most of a day. So I'm happy about that and hope this new neurologist will work out.
That's it for now. Thanks for your prayers and support.
One, she updated my meds. Didn't like the one medication I showed her. She said it wasn't in her "go to medications" because she felt the beneficial affect it could have didn't tend to deliver enough "punch" in exchange for the potential negative side effects. I didn't argue with her, though I'd heard/read some good things about it. Most of it anecdotal and not proven, though. I've also read a lot of doctors aren't read up on it too, and this may have been the case as she seemed to think it would require dietary restrictions when everything I've read from reputable sources say at normal doses, it doesn't require it because it inhibits MAO-B, not MAO-A which does have those restrictions. She didn't seem to be aware of that difference.
At any rate, our new med plan is my Sinemet has been doubled. Instead of taking one pill 3 times a day, I'll take two 3 times a day. Then if in 2 months I still feel I need more help, I can contact her and she re-prescribe the Ropinerole that was helping earlier this year.
Into day 2 of taking the double dose, I can tell it is helping. Less stiffness in my left arm. Still not normal, but I'll give it a week or two to build up before I decide whether I need more help.
But I got some good news! Currently I have an hour and a half drive each way to go see this neurologist. She said she recalled seeing an email about a new neurologist in the Marble Falls facility they are building. She checked, got his name, and I said I'd like to try him out. So I ended up with an appointment to see him on Nov. 10th.
This will really be helpful, since he'll only be about 10 minutes away. Saves gas money and taking up most of a day. So I'm happy about that and hope this new neurologist will work out.
That's it for now. Thanks for your prayers and support.
Friday, April 11, 2014
Medication Experimentation - Part Two
I continued my research. Before I started taking the Sinemet again, I ran across an article claiming that magnesium--ideally magnesium chloride--would reverse the progression of PD symptoms. A scientific basis was proposed--another theory. But again, it wouldn't be costly to give it a try, at least for a month, since it was safe to do so. So found and ordered some, 520 mg pills, and started taking them 10/1/13.
I took them until 12/10/13, when the bottle ran out. I didn't feel they helped symptoms. That's not to say they weren't helping in other ways, but I had no way to tell that. The claim was it would reduce symptoms. It didn't.
More research pulled up an article with a lot of suggestions. Evaluating them, I ordered and started taking the following supplements on 10/25/13:
Two days later I stopped taking Tyrosine because I discovered it interfered with the effectiveness of Sinemet, just like meat protean does. If I had been smart, I would have taken it at some point between does so it wouldn't interfere. But at the time I just stopped to see what the rest did.
So from 10/15/13 through November, I was taking in total: Sinemet, Ginkgo, Acetylene-Cysteine, and Magnesium Chloride. Through that time, I couldn't tell that any of it helped my symptoms other than the Sinemet, and that only partially.
My first visit with the neurologist happened at the end of November. That's when she confirmed I had PD and had a CAT scan done to check for strokes or other brain problems that could cause those symptoms. The CAT scan showed I was "normal." At least someone thinks I am.
The neurologist wanted me to try an alternate medication to Sinemet. The brand name she prescribed was Ropinirole. It is a dopamine-agonist. In short, instead of adding more dopamine into my system, it stimulates the dopamine-producing neurons to produce and receive dopamine.
So 12/1/13 I stopped taking Sinemet and 12/2/13 was my first day on Ropinirole. Unlike the Sinemet, I had more side-effects from it. The first week, the most noticeable side effect was dizziness. But it was a very specific action that caused it. When I'm in bed, and I turned to my left side, the whole room would spin and I would feel like I wanted to throw up. As I understand it, it has to something to do with lowering your blood pressure, which is why you work up to a full dose. She had me go at least one week on a half-dose before taking the full dose. But I didn't experience dizziness at any other time, and the room-spinning passed before one week was out.
The only other side-effect I experienced was drowsiness. I could stay awake, and I didn't have much trouble driving, but there were times I could tell my reflexes were dulled. Waking up in the mornings was harder. I felt groggier waking up for longer than usual. Overall, during the day, I simply felt slightly tired all the time. But my body adjusted and I got used to the drowsy feeling so that I didn't notice it much.
The neurologist said to stay on the half-dose if it did the job. By the end of one week, I could tell it was helping reduce symptoms, but not as much as the Sinemet did. So I went up to the full dose the following week. After a few days on it, it felt like it reduced symptoms as much as the Sinemet. So I ended up on 12/9/13 taking .5 mg three times a day. I've been taking it up through yesterday. More info on that later, but today is my first day off Ropinirole.
During this time, I stopped taking the magnesium chloride and the acetylene-cysteine when they ran out. I ordered more of the Ginkgo since that is well established to help brain functions, and I figured I could use all the help I could get. So by Christmas, I was taking Ropinirole and Ginkgo, along with my multivitamin and fish oil I'd been taking all along, even before getting PD, along with the coconut oil in my morning oatmeal.
My next neurology appointment was in January 2014. Upon further evaluation, she decided to add Sinemet back into my medicine alongside the Ropinirole. So on 1/14/14, I resumed taking the original dose of Sinemet. To date, that has gained me the biggest relief from symptoms to date. Even at church, while I would shake some and feel rigidity in my left arm and fingers, it was minimal compared to what it was before. Much more manageable.
That above cocktail of medicine and supplements is what I've been on since 1/14/14 until yesterday. The refills ran out on my Ropinirole. I could have called the doctor and got more, but the additions I'm making this week based on research caused me to decide to go off it, and see if these other changes could compensate.
They may, however, have a slow build-up effect. In that regard, this isn't the best time to stop taking it. Next week is Holy Week, and I'll be chanting extra services that are special and long. Which means added stress. If my new plan doesn't kick in right away, or at all, next week could be difficult.
What is my new plan? Two pronged. First, I'm going on a special diet that is supposed to benefit the mitochondria in the brain cells. Mitochondria manage energy production in cells. So the diet attempts to have you eat foods that benefit them, and avoid foods that hurt/hinder them.
The core of the diet is to avoid processed foods, sweeteners, breads, dairy, and unsprouted grains and beans, and instead eat three cups of green vegetables, 3 cups of sulfur vegetables (cabbage family, onions, and the like), and three cups of "colors," vegetables and fruits with color like berries, red cabbage, etc. Plus some protein from free-range, grass-fed, wild-caught chicken, beef, and fish respectively. Since we are fasting from meat during Lent, but shellfish is allowed, most of our "meat" protein comes from shrimp, and occasionally scallops or clams. Also supposed to have one serving of organ meats like liver, heart, brain, tongue, etc. If you're interested about this diet, do an internet search on Dr. Terry Wahl.
We started this diet this past Monday, 4/7/14. There are reports from people, one we know, that this diet--originally developed for autoimmune diseases like MS--has reduced symptoms significantly. One lady we know who has PD reports before the diet she couldn't safely drive. After a few months, she now can again. But this isn't something I can expect will help me out this coming week. In two to four months, I can probably give you an update on how it is helping, or not as the case may be. In a year, I should know for sure if this is something that can help. Even if it doesn't, it will at least have me eating a lot healthier.
The second addition is a new list of supplements that have been shown to help brain functions. From that info, starting 4/10/14, I've added the following to what I'm already taking:
These too might take a while to have an effect. But I'm hoping that will happen in a week's time, by which I'll be going into my heaviest chanting part of the week. If not, I may be on the shaky side. But I hope to find out whether this is helping within a month's time.
One other change I started two and a half weeks ago. I read about some early testing done on fruit flies and mice that the "artificial" sweetener mannital has been shown to reduce PD symptoms. It is a long ways from becoming an approved treatment, but I figured why not use it as a sweetener? But it isn't sold retail much. It is mostly used to coat candies to give it that cool feeling in the mouth. And it is also prescribed for children as a laxative. But I read it could be taken less than 20 g. a day safely. Whether that would be enough to help PD, who knows. But it could build up over time, can't hurt as long as I don't take too much a day, and helps with the PD constipation anyway. Win-win in my book.
So as of 3/28/14, I started taking 4 teaspoon in my oatmeal each morning, providing around 16 g. It has half the sweetness of sugar, so you have to use twice as much. My only problem may be if one of these solutions does work, I may not be so sure which it is. At any rate, my next neuro appointment is in July. By then I should be able to tell if any of it is helping, and if not, have her prescribe the Ropinirole again.
Starting today, however, the only prescription I'm on is Sinemet. The nice thing will be more alertness. But at least in the short term, more shakiness, rigidity, and pain. It will be a blessing if these supplements do the job.
That pretty much catches us up on my medication history to date. I do want to go into other types of treatment in my next post. But it will likely be sometime after Easter before I'll do it. With taxes and Holy Week, I"ll have my plate full for the next few days. Until then...
I took them until 12/10/13, when the bottle ran out. I didn't feel they helped symptoms. That's not to say they weren't helping in other ways, but I had no way to tell that. The claim was it would reduce symptoms. It didn't.
More research pulled up an article with a lot of suggestions. Evaluating them, I ordered and started taking the following supplements on 10/25/13:
- Ginkgo Biloba: helps blood flow to and health of the brain
- Tyrosine: used in the production of dopamine
- Acetylene-Cystine: supposed to help offset toxic chemicals/processes in the brain.
Two days later I stopped taking Tyrosine because I discovered it interfered with the effectiveness of Sinemet, just like meat protean does. If I had been smart, I would have taken it at some point between does so it wouldn't interfere. But at the time I just stopped to see what the rest did.
So from 10/15/13 through November, I was taking in total: Sinemet, Ginkgo, Acetylene-Cysteine, and Magnesium Chloride. Through that time, I couldn't tell that any of it helped my symptoms other than the Sinemet, and that only partially.
My first visit with the neurologist happened at the end of November. That's when she confirmed I had PD and had a CAT scan done to check for strokes or other brain problems that could cause those symptoms. The CAT scan showed I was "normal." At least someone thinks I am.
The neurologist wanted me to try an alternate medication to Sinemet. The brand name she prescribed was Ropinirole. It is a dopamine-agonist. In short, instead of adding more dopamine into my system, it stimulates the dopamine-producing neurons to produce and receive dopamine.
So 12/1/13 I stopped taking Sinemet and 12/2/13 was my first day on Ropinirole. Unlike the Sinemet, I had more side-effects from it. The first week, the most noticeable side effect was dizziness. But it was a very specific action that caused it. When I'm in bed, and I turned to my left side, the whole room would spin and I would feel like I wanted to throw up. As I understand it, it has to something to do with lowering your blood pressure, which is why you work up to a full dose. She had me go at least one week on a half-dose before taking the full dose. But I didn't experience dizziness at any other time, and the room-spinning passed before one week was out.
The only other side-effect I experienced was drowsiness. I could stay awake, and I didn't have much trouble driving, but there were times I could tell my reflexes were dulled. Waking up in the mornings was harder. I felt groggier waking up for longer than usual. Overall, during the day, I simply felt slightly tired all the time. But my body adjusted and I got used to the drowsy feeling so that I didn't notice it much.
The neurologist said to stay on the half-dose if it did the job. By the end of one week, I could tell it was helping reduce symptoms, but not as much as the Sinemet did. So I went up to the full dose the following week. After a few days on it, it felt like it reduced symptoms as much as the Sinemet. So I ended up on 12/9/13 taking .5 mg three times a day. I've been taking it up through yesterday. More info on that later, but today is my first day off Ropinirole.
During this time, I stopped taking the magnesium chloride and the acetylene-cysteine when they ran out. I ordered more of the Ginkgo since that is well established to help brain functions, and I figured I could use all the help I could get. So by Christmas, I was taking Ropinirole and Ginkgo, along with my multivitamin and fish oil I'd been taking all along, even before getting PD, along with the coconut oil in my morning oatmeal.
My next neurology appointment was in January 2014. Upon further evaluation, she decided to add Sinemet back into my medicine alongside the Ropinirole. So on 1/14/14, I resumed taking the original dose of Sinemet. To date, that has gained me the biggest relief from symptoms to date. Even at church, while I would shake some and feel rigidity in my left arm and fingers, it was minimal compared to what it was before. Much more manageable.
That above cocktail of medicine and supplements is what I've been on since 1/14/14 until yesterday. The refills ran out on my Ropinirole. I could have called the doctor and got more, but the additions I'm making this week based on research caused me to decide to go off it, and see if these other changes could compensate.
They may, however, have a slow build-up effect. In that regard, this isn't the best time to stop taking it. Next week is Holy Week, and I'll be chanting extra services that are special and long. Which means added stress. If my new plan doesn't kick in right away, or at all, next week could be difficult.
What is my new plan? Two pronged. First, I'm going on a special diet that is supposed to benefit the mitochondria in the brain cells. Mitochondria manage energy production in cells. So the diet attempts to have you eat foods that benefit them, and avoid foods that hurt/hinder them.
The core of the diet is to avoid processed foods, sweeteners, breads, dairy, and unsprouted grains and beans, and instead eat three cups of green vegetables, 3 cups of sulfur vegetables (cabbage family, onions, and the like), and three cups of "colors," vegetables and fruits with color like berries, red cabbage, etc. Plus some protein from free-range, grass-fed, wild-caught chicken, beef, and fish respectively. Since we are fasting from meat during Lent, but shellfish is allowed, most of our "meat" protein comes from shrimp, and occasionally scallops or clams. Also supposed to have one serving of organ meats like liver, heart, brain, tongue, etc. If you're interested about this diet, do an internet search on Dr. Terry Wahl.
We started this diet this past Monday, 4/7/14. There are reports from people, one we know, that this diet--originally developed for autoimmune diseases like MS--has reduced symptoms significantly. One lady we know who has PD reports before the diet she couldn't safely drive. After a few months, she now can again. But this isn't something I can expect will help me out this coming week. In two to four months, I can probably give you an update on how it is helping, or not as the case may be. In a year, I should know for sure if this is something that can help. Even if it doesn't, it will at least have me eating a lot healthier.
The second addition is a new list of supplements that have been shown to help brain functions. From that info, starting 4/10/14, I've added the following to what I'm already taking:
- 1 g. Tyrosine: taken in the middle of the night to keep from interfering with the Sinemet.
- 400 mg. Vit B6: a key vitiamine needed by the brain for healthy dopamine production, also taken middle of the night with the tyrosine, for the same reasons.
- 1040 mg. of Magnesium Chloride, again: helps with proper functioning of brain neurons.
- 2 g. Vit C: free-radical fighter, to deal with radicals hurting the brain.
- 1000 mg. Grape Seed extract: another free-radical fighter. It was either this or Vit E, and Dr. Furman warns against getting too much E, as it can negatively affect health.
These too might take a while to have an effect. But I'm hoping that will happen in a week's time, by which I'll be going into my heaviest chanting part of the week. If not, I may be on the shaky side. But I hope to find out whether this is helping within a month's time.
One other change I started two and a half weeks ago. I read about some early testing done on fruit flies and mice that the "artificial" sweetener mannital has been shown to reduce PD symptoms. It is a long ways from becoming an approved treatment, but I figured why not use it as a sweetener? But it isn't sold retail much. It is mostly used to coat candies to give it that cool feeling in the mouth. And it is also prescribed for children as a laxative. But I read it could be taken less than 20 g. a day safely. Whether that would be enough to help PD, who knows. But it could build up over time, can't hurt as long as I don't take too much a day, and helps with the PD constipation anyway. Win-win in my book.
So as of 3/28/14, I started taking 4 teaspoon in my oatmeal each morning, providing around 16 g. It has half the sweetness of sugar, so you have to use twice as much. My only problem may be if one of these solutions does work, I may not be so sure which it is. At any rate, my next neuro appointment is in July. By then I should be able to tell if any of it is helping, and if not, have her prescribe the Ropinirole again.
Starting today, however, the only prescription I'm on is Sinemet. The nice thing will be more alertness. But at least in the short term, more shakiness, rigidity, and pain. It will be a blessing if these supplements do the job.
That pretty much catches us up on my medication history to date. I do want to go into other types of treatment in my next post. But it will likely be sometime after Easter before I'll do it. With taxes and Holy Week, I"ll have my plate full for the next few days. Until then...
Saturday, April 5, 2014
Medication Experimentation - Part One
When my doctor said he felt pretty sure I had Parkinson's, my initial reaction was sort of nothing. I had a passing awareness of the disease, that it caused tremors, but that was about it. I had no idea how bad of a thing it was, or not.
So naturally when I returned home, I hopped on the internet and started researching both Parkinson's, Essential Tremors, as well as Multiple Sclerosis. I quickly ruled out MS. But for a period of time I thought I might have ET instead of PD. But I began to realize the PD symptoms fit what I was experiencing more so than ET.
As mentioned before, I went a few months before deciding to take the Sinemet (a combination of Levadopa and Carbadopa that stimulates dopamine production in the brain to replace what is missing) to see whether or not it helped my symptoms.
With PD, also both ET and MS, the medical establishment doesn't know why people get it, except in a small percentage of cases (genetic and exposure to certain chemicals), nor is there a cure for it. It is a progressive disease. Currently, all doctors can do is treat the symptoms. There is one potential drug in the final stage of testing that has the potential to slow or halt PD progressing in some people. That is a few years down the road, however, and won't work on everyone. Right now, all doctors can do is prescribe medicine to manage the symptoms. The progression of the disease goes on, unchecked. Some even say the typical PD medications end up accelerating PD progression. Also medically, levadopa drugs like Sinemet tend to bring on dyskinesia with long-term use, which can be just as debilitating as PD itself. Michal J. Fox is a good example of someone with dyskinesia.
While other diseases can be more life-threatening, many of them can also be cured and the person eventually return to a normal life. Whereas with PD, the common saying is you don't tend to die from PD, but you die with it.
But when it comes to trying different things and "drugs" it also has its benefits. Trying out other things, as long as they are safe to do so, isn't going to speed up or slow down PD itself. Even deciding to take nothing isn't going to speed up the march to ending up in a wheelchair should one live that long.
I started taking the Sinemet in August of 2013. I took only that for about two weeks. During that time, it did seem my symptoms lessened, but I didn't get the "all back to normal" experience that some do with the drug. I heard about a potential alternative treatment: coconut oil. The lady who promotes this had a husband with Alzheimer's. He was getting worse. She learned about coconut oil's medium-chain triglycerides that can pass through the brain barrier (a barrier that filters out bad stuff from getting into the brain area) and provide energy lacking in those patients from the inability of the brain to produce its own energy from glucose. At least, that's the theory. It has yet to be tested in clinical trials, primarily because there is no profit potential for drug companies to do so, and no donations have been given.
What I've learned is that there is an abundance of theories of what causes PD and how to fix it. So one has to be careful, especially if they are selling something. But when it made sense to give something a try, why not as long as it is safe to eat/take?
So I didn't buy the lady's book, but our grocery store carried a decently priced jar of organic, cold-pressed, pure coconut oil. Most of them are expensive, but while still not cheap, we found a large jar for around $10. The LuAnn version didn't have the quality needed to assure it would have the MCT needed.
I started taking 4 tablespoons in my morning oatmeal. The lady recommended 8. Tried to figure out what else to put it in. Tried my fruit smoothie, but I didn't like it. Oatmeal seemed to be the only thing I could put it in and eat it. And 8 T was too much for one bowl. Plus, while I'd heard about all the health benefits of coconut oil, I didn't want to overdo it and end up with a heart attack trying to fix PD.
So I stuck with 4 T a day. If I noticed any significant improvement, I'd up it to 8, somehow. So for another two weeks, I took coconut oil everyday except Sundays and a few Saturdays. During that time, I did seem to improve, but I had no idea whether it was the coconut oil, or the cumulative effects of the Sinemet.
To find out which one was the help and to find out if a worsening of symptoms might confirm the Sinemet was helping, I decided to stop taking the drug. By the end of one week being off of Sinemet, but still taking coconut oil, my symptoms got noticeably worse. It verified two things. One, the coconut oil wasn't doing anything for my PD symptoms; it was all Sinemet. Two, it confirmed that the Sinemet was helping for sure. Another confirmation that what I had was PD.
So I wasn't surprised when my nuerologist confirmed I had PD. I would have been surprised if she'd said anything different at that point. That said, while the coconut oil didn't seem to help my symptoms, it was still possible that it did help mental sharpness. Since a percent of PD patients get dementia, and it is a healthy oil anyway, why not keep at it?
So, even to this day I still take 4 T in my morning oatmeal. It is hard to say how well it is helping, since I may not be experiencing the same mental awareness if I weren't on it, but there is no way to know that other than to get off it.
After two weeks of being off Sinemet, the symptoms, noticeably worse than they were before I took it, were getting difficult to deal with, especially while chanting at church. So on 9/24/13, I started taking it again, at least until the neurologist said to do something different.
But that wasn't the end of my testing things out. Even now, I'm trying something new. But I'm out of time and this is long enough for one post. So I'll have to continue my story later Until then.
So naturally when I returned home, I hopped on the internet and started researching both Parkinson's, Essential Tremors, as well as Multiple Sclerosis. I quickly ruled out MS. But for a period of time I thought I might have ET instead of PD. But I began to realize the PD symptoms fit what I was experiencing more so than ET.
As mentioned before, I went a few months before deciding to take the Sinemet (a combination of Levadopa and Carbadopa that stimulates dopamine production in the brain to replace what is missing) to see whether or not it helped my symptoms.
With PD, also both ET and MS, the medical establishment doesn't know why people get it, except in a small percentage of cases (genetic and exposure to certain chemicals), nor is there a cure for it. It is a progressive disease. Currently, all doctors can do is treat the symptoms. There is one potential drug in the final stage of testing that has the potential to slow or halt PD progressing in some people. That is a few years down the road, however, and won't work on everyone. Right now, all doctors can do is prescribe medicine to manage the symptoms. The progression of the disease goes on, unchecked. Some even say the typical PD medications end up accelerating PD progression. Also medically, levadopa drugs like Sinemet tend to bring on dyskinesia with long-term use, which can be just as debilitating as PD itself. Michal J. Fox is a good example of someone with dyskinesia.
While other diseases can be more life-threatening, many of them can also be cured and the person eventually return to a normal life. Whereas with PD, the common saying is you don't tend to die from PD, but you die with it.
But when it comes to trying different things and "drugs" it also has its benefits. Trying out other things, as long as they are safe to do so, isn't going to speed up or slow down PD itself. Even deciding to take nothing isn't going to speed up the march to ending up in a wheelchair should one live that long.
I started taking the Sinemet in August of 2013. I took only that for about two weeks. During that time, it did seem my symptoms lessened, but I didn't get the "all back to normal" experience that some do with the drug. I heard about a potential alternative treatment: coconut oil. The lady who promotes this had a husband with Alzheimer's. He was getting worse. She learned about coconut oil's medium-chain triglycerides that can pass through the brain barrier (a barrier that filters out bad stuff from getting into the brain area) and provide energy lacking in those patients from the inability of the brain to produce its own energy from glucose. At least, that's the theory. It has yet to be tested in clinical trials, primarily because there is no profit potential for drug companies to do so, and no donations have been given.
What I've learned is that there is an abundance of theories of what causes PD and how to fix it. So one has to be careful, especially if they are selling something. But when it made sense to give something a try, why not as long as it is safe to eat/take?
So I didn't buy the lady's book, but our grocery store carried a decently priced jar of organic, cold-pressed, pure coconut oil. Most of them are expensive, but while still not cheap, we found a large jar for around $10. The LuAnn version didn't have the quality needed to assure it would have the MCT needed.
I started taking 4 tablespoons in my morning oatmeal. The lady recommended 8. Tried to figure out what else to put it in. Tried my fruit smoothie, but I didn't like it. Oatmeal seemed to be the only thing I could put it in and eat it. And 8 T was too much for one bowl. Plus, while I'd heard about all the health benefits of coconut oil, I didn't want to overdo it and end up with a heart attack trying to fix PD.
So I stuck with 4 T a day. If I noticed any significant improvement, I'd up it to 8, somehow. So for another two weeks, I took coconut oil everyday except Sundays and a few Saturdays. During that time, I did seem to improve, but I had no idea whether it was the coconut oil, or the cumulative effects of the Sinemet.
To find out which one was the help and to find out if a worsening of symptoms might confirm the Sinemet was helping, I decided to stop taking the drug. By the end of one week being off of Sinemet, but still taking coconut oil, my symptoms got noticeably worse. It verified two things. One, the coconut oil wasn't doing anything for my PD symptoms; it was all Sinemet. Two, it confirmed that the Sinemet was helping for sure. Another confirmation that what I had was PD.
So I wasn't surprised when my nuerologist confirmed I had PD. I would have been surprised if she'd said anything different at that point. That said, while the coconut oil didn't seem to help my symptoms, it was still possible that it did help mental sharpness. Since a percent of PD patients get dementia, and it is a healthy oil anyway, why not keep at it?
So, even to this day I still take 4 T in my morning oatmeal. It is hard to say how well it is helping, since I may not be experiencing the same mental awareness if I weren't on it, but there is no way to know that other than to get off it.
After two weeks of being off Sinemet, the symptoms, noticeably worse than they were before I took it, were getting difficult to deal with, especially while chanting at church. So on 9/24/13, I started taking it again, at least until the neurologist said to do something different.
But that wasn't the end of my testing things out. Even now, I'm trying something new. But I'm out of time and this is long enough for one post. So I'll have to continue my story later Until then.
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