Wednesday, January 6, 2016
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, June 23, 2015
Exercise and Zumba
Today I have a "treat" for you. I'm revealing footage of a lumbering dude doing a Zumba dance. Aren't you excited!
More like a shaking, lumbering dude. As I explain in the video, I've been experimenting with my Sinemet doses in conjunction with my new medication to find a "sweet spot". I obviously wasn't in the sweet spot in this video. Trial and error is so much fun! Not!
Anyway, I update you on how that trial and error is going, and talk about the exercises I'm doing, along with the video of me doing one of our many Zumba dances.
The song is "Paso a Pasito," a Zumba original. The girl dancing with me is 11 years old and named Addy. She won second place in a talent competition doing this song. She at least shows you what I should be doing. I need to think BIG movements more. lol.
Enjoy.
More like a shaking, lumbering dude. As I explain in the video, I've been experimenting with my Sinemet doses in conjunction with my new medication to find a "sweet spot". I obviously wasn't in the sweet spot in this video. Trial and error is so much fun! Not!
Anyway, I update you on how that trial and error is going, and talk about the exercises I'm doing, along with the video of me doing one of our many Zumba dances.
The song is "Paso a Pasito," a Zumba original. The girl dancing with me is 11 years old and named Addy. She won second place in a talent competition doing this song. She at least shows you what I should be doing. I need to think BIG movements more. lol.
Enjoy.
Tuesday, June 16, 2015
Dyskinesia and Doctor's Visit
Greetings and salutations!
I'm trying something new: a video blog in conjunction with this blog. It will allow me more flexibility and be able to show, not just tell you what is going on with me.
First up, I talk about my dyskinesia symptoms and what the doctor is hoping will help with it.
Enjoy!
I'm trying something new: a video blog in conjunction with this blog. It will allow me more flexibility and be able to show, not just tell you what is going on with me.
First up, I talk about my dyskinesia symptoms and what the doctor is hoping will help with it.
Enjoy!
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.
Thursday, March 12, 2015
The Parkinson's War
I wrote a poem for Parkinson's Awareness month last April. While April is yet to come this year, a group I'm in is doing a "Never Give Up" theme for this month, so I wrote another poem to commemorate both events. So without further delay, I give you my Parkinson's poem for 2015.
We march to battle
with shuffling feet.
“Heal, toe! Heal, toe!”
the cadence commands.
We load our weapons
with fumbling fingers.
Our ammo: medicine, a
healthy diet, and exercise.
To battle till death
with an undefeated foe.
Undefeated because
there is no cure . . . yet.
But the battle is not won
by simply killing the enemy,
Though we hope and pray
to see the day of its defeat.
The true battle is a fight
to live life to its fullest.
Despite the odds.
Despite the losses.
That, my fellow Parkies,
is a battle we can win—today.
~ R. L. Copple
The Parkinson's War
We march to battle
with shuffling feet.
“Heal, toe! Heal, toe!”
the cadence commands.
We load our weapons
with fumbling fingers.
Our ammo: medicine, a
healthy diet, and exercise.
To battle till death
with an undefeated foe.
Undefeated because
there is no cure . . . yet.
But the battle is not won
by simply killing the enemy,
Though we hope and pray
to see the day of its defeat.
The true battle is a fight
to live life to its fullest.
Despite the odds.
Despite the losses.
That, my fellow Parkies,
is a battle we can win—today.
~ R. L. Copple
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