I wanted to squeeze in one more post I've been needing to do before I turn my attention mostly to my experiences with the DBS (deep brain stimulation) surgery coming up.
I'm typing this one out rather than a video blog in part because my wife is napping and will soon go to bed and I don't want to disturb her and also because if I type it out, I don't have to pronounce that big drug name and make a fool out of myself. <g> You have my permission to pronounce it in your head anyway you want.
The abbreviation for this substance is TUCDA. What is it? It is ursodeoxycholic acid that has been joined to taurine, a sulfur-containing amino acid in your body important in the metabolism of fats. Thus the prefix "tauro" to the word.
So then, what is ursodeoxycholic acid (UCDA)? Glad you asked. It is a type of bile acid naturally produced in our bodies that is prescribed by doctors to dissolve a certain type of gall stone. The liver in processing UCDA combines it with taurine. To pre-combine it saves the liver some work. Plus TUCDA is a supplement sold over the counter, usually touted as a way to keep your liver healthy for people working out (I assume because some of the "supplements" they take aren't so good for the liver). However, especially if you have good drug insurance, if you can get a doctor to prescribe UCDA for you as an "off label" use, it is much cheaper than buying TUCDA from your drug store, health food store, or online.
Why would I want to buy it? For those new to the blog, I direct your attention to the posts in January and February of 2015. You may not have the time to read them all now, so I'l summarize what you'll find. I had read a couple of people's experiences with this substance, and how it seemed to improve their symptoms as well as showed promise of possibly slowing down the disease progression based on cellular studies and one small clinical trial for a related disease (ALS) where it successfully extended the patient's life indicating a slowing of progression in that disease. At the time, however, it still lacked any clinical trials for Parkinson's showing a significant number of people would be symptomatically helped by it or that it would indeed slow down the progression.
With that, and studies showing the drug was safe for most people, I decided to verify for myself whether it would help me any. Low and behold, to my surprise, it did! I sincerely didn't think it would because I'd tried so many other things that claimed to help or "cure" PD only to get zero results from them, that I fully expected this to also fall into that camp. If you read through those posts, you'll see the significant improvements in symptoms that I was having at the time that I concluded was due to taking TUCDA.
Consequently, I continued to take them after the test was over, and I did so through 2015 and 2016. During that time period, my disease did progress (few expected it to actually stop the disease, just slow it down) but it was primarily due to getting off the drug Amantadine twice. Once at the end of 2015 in order to be part of a clinical trial on an extended release Amantadine, and then the end of the clinical trial in May of 2016. Both times I had to increase my dosage of levodopa to compensate for the worsening of symptoms: from 100 mg 3x/day to 200 mg 3x/day, and then to 200 mg 4x/day due to earlier off times.
By the end of 2016 or the beginning of this year, our finances became very tight. So much so that I simply didn't have the money to pay all the bills. Since my monthly supply of TUCDA ran me around $80/month, it came down to not having the money to buy it. So I stopped and hoped for the best.
In many ways, my symptoms that I had before taking TUCDA were worse than they are now. A big part of that is in February of 2015 I embarked on an intensive exercise program that I'm still very active in. I've noticed several symptomatic improvements from that as well, and there are clinical trials proving that cardiovascular exercise does slow the progression of Parkinson's Disease. Ironically, I'm probably in the best physical shape of my life right now. Improvements from exercise I've noticed include nearly total regaining control of my bladder, a clearer head--less times I've felt a grogginess in my thinking--, improvement in gait, improvement in balance (though dyskinesia does a number on that too), being able to open packages with my bare hands (I often needed scissors to do so) are examples.
Despite all that, sometime in the Spring, I believe, I was having significant off times again. I added another half-pill of levodopa to the dose, so uped it to 250 mg 4x/day. Then in June I had to add a half of the now 250 mg pill I was taking to deal with the symptoms so that I was taking 375 mg 4x/day. The disease did seem to be progressing faster this year since getting off TUCDA, and there was nothing like getting off Amantadine that I could point to for the cause.
As some reading this know, in August, I started getting Medicare. It is the main reason I can afford to get DBS surgery at this time. One of the other benefits I get with it is paying only a $5 co-pay for the three medications I've been taking. So what cost me just over $100/month was now costing me $15.00. Cool!
Well, I happened upon those post back in Jan and Feb of 2015 and I recalled how it helped then, how things had seemed to go downhill this year, and thanks to the reduction in how much I had to pay for my drugs, I could now afford to get back on TUCDA. So I looked and found one that was even cheaper than before, costing me under $60 for a month's supply. I think I paid $54.00. So I ordered some and started taking them again.
That was about two weeks ago. What's happened since then? One of the unexpected symptom improvements last time was my voice. I had begun to lose my low bass notes. Had trouble hitting them, and if I did, had trouble holding onto them solidly. What has happened since getting off TUCDA in Jan of this year? I was retired as a chanter because of trouble singing songs I knew well. And in July, I was seriously considering whether I should continue in the choir because I couldn't hit the low notes well or with any volume. I felt I was contributing very little and would be better to go sit with the rest of the people and leave the singing to the others.
These last two Sundays, almost immediately upon taking TUCDA, just as it happened last time, my low range has returned. I was able to sing solidly in choir, and my reading voice was loud as before. I need to keep taking this if for no other reason, because it helps me retain my vocal range and voice.
The first week of taking it, I noticed my dyskinesia increased. Those are uncontrolled movements due to overstimulation of the nervous system by the drugs I'm taking. For me it involves head bobbing due to muscles in my neck tightening uncontrollably, and my left leg wiggling because it wants to move! When that happens, it is a sign that you're getting too much levodopa. So I stopped taking the extra half-pill I'd added on last time and that dose seems to be working fairly well, whereas before I had a big off time. Now the end of my dose even with this lesser amount of levodopa, is better than it was before adding that half pill in. Which indicates that either the TUCDA is improving my symptoms once again, and/or is making the levodopa and other drugs more effective.
The only other possible explanation for those improvements is I did switch my diet from ketogenic to plant-based about the same time I started taking TUCDA again. It is possible that played into it. Not as likely since it will take a few weeks for my body to switch over and the full effect of the new diet to manifest itself in symptom improvements. And nothing other than TUCDA has ever affected my vocal decline like that, and that fast. Within the first week, I could tell that by the end of playing pickle ball, when before my symptoms made it near impossible to play, now they are minor enough I can still play with some gusto. I don't think a diet change would have made that improvement that fast.
So that's my report on that front. It will be interesting to see how much I can reduce my medications after the DBS. Even if I'm able to totally get off of them, I may still take TUCDA to keep progression as slow as possible.
This Tuesday, I have my MRI done. I'll be under general anesthesia for the first time in my life. I'm hoping for it to be nothing more than taking a 2-4 hour nap. It'll go quick for me. Not so much for my wife who will be sitting in the waiting room.
Be sure to follow this blog by email using the form below the comment section if you want to stay updated on not only how the MRI goes Tuesday afternoon, but the rest of my DBS adventure.
Thanks for reading!
Showing posts with label dyskinesia. Show all posts
Showing posts with label dyskinesia. Show all posts
Monday, September 11, 2017
Friday, August 12, 2016
Medication Juggling
Finally getting an update on the blog. So much going on the last few months, it's been hard getting to it. But here it is, in case you've been wondering how I'm doing and what I've been up to lately.
Wednesday, May 25, 2016
Lots of New News
Been a while since I've updated you all on my journey to date. I've been needing to get on here and update everyone on what's happening for some time, but have been too busy to do so. Since I have a few moments, I'm seeing if I can slip it in here today. So lets get to it.
The biggest news is the Amantadine ER (extended release) trial. In case you've forgotten, last June my neurologist put me on Amantadine, in the hopes it might help my dyskinesia--a side effect of the levadopa medication used to control Parkinson's symptoms, which causes uncontrolled movements in many cases, of which I was one. Mostly for me, it was in the neck and left leg/toes. While the medication did have some positive benefits--reduced stiffness in the left arm and fingers, reduced off times on the levadopa--it didn't have quite the desired effect on my dyskinesia. It did reduce the peaks of dyskinesia that typically came around the 5th hour of my 6 hour dose of levadopa, but it also spread the dyskinesia in a minor to medium level through most of the dosage period of 6 hours, save about 30 minutes on each end. Each individual responds to medication in different ways, so you never know what you are going to get.
It also came with some decent side-effects: increased constipation, which I was able to control with fiber and magnesium, swelling of my legs, and sensitivity of my eyes to light--I had to buy prescription sun glasses to help with driving in bright sunlight. It was manageable, though the increased dyskinesia time was annoying even as not having the so high peak at the end was a blessing. A mixed bag overall. But I had kept on it because it did help my left arm and enabled me to type easier, which for me was a big benefit, being a writer and all.
If you've been a regular reader of this blog, you'll know back in December I signed up for a clinical trial for a new drug: Anantadine ER, an extended release version of the same drug I was on. In order to do that study, I had to get off of the normal Amantadine. In so doing, my PD symptoms became worse, so that I now had to take double the amount of levadopa I had been taking previously to get relief from the left arm stiffness and the tremors. Complicating that, I had some delays in starting the study due to some low platelet reading on my blood work, so had to get that checked out to make sure there was nothing bad going on. Turns out there wasn't, I just have a low platelet count. But it wasn't until some time in February that I was able to start taking the trial version of the drug.
Once I started taking it, I knew the first day I did not get the placebo. It caused the effect with my dyskinesia identical to the first day I started Amantadine last June. It spread my peak dyskinesia of around 30 minutes to last most of the 6 hour dose. Only since it was a higher amount--originally was on 200 mg/day, the trial dosage was either 250 mg/day or 350 mg/day, never found out which one I was on--the dyskinesia was more intense. As the study progressed, that seemed to increase. Likewise, my side-effects were there, but became worse. For example, the treatment I used to offset the constipation from the regular Amantadine was failing me a few weeks into the study. However, the peak dyskinesia was reduced significant and the left-arm stiffness was non-existent, as was any off times on the levadopa. My leg swelling seemed to be worse, and I was concerned it would get bad enough I'd have to stop participating in the study.
As it turned out, I didn't have to make that call. The pharmaceutical company funding the study decided to end the trial due to lack of participation. So as of the last couple of weeks, I've been off of the study drug and back on the regular Amantadine. For the moment I'm on half of my previous does of 200 mg/day. I'm hoping it will be enough without increasing it, but after a week (next Monday) I can increase it to 200 mg/day again if I need it.
The good news is the trial doctor is a Movement Disorder Specialist: a neurologist who specializes in neurological diseases that cause movement disorders like Parkinson's and Multiple Sclerosis. When the study was ending, she said she'd like to have me as a permanent patient. And knowing I didn't have insurance, she offered a special price for the visits, making it affordable.
That was a blessing on two fronts. One, everyone was saying I really needed to see a MDS rather than a general neurologist. I'd been trying to figure out how to initiate that since I'd need a referral from my current neurologist and he didn't seem to think an MDS was necessary. This made it simple. Two, my patient assistance at Scott & White is about to expire, like tomorrow, and thanks to my new disability payments, I'm pretty sure my income will be too much to allow me to qualify for it again, though I'll try. In which case, I'd have to pay over $250 for each visit to see my neurologists. So this means I can avoid that cost while getting to upgrade to a MDS doctor at the same time!
Additionally, it also means I'll now have an MDS who can help me get deep brain stimulation done when I'm financially ready. She's certified to do the programming once they've installed it in me. And a few weeks ago I asked her if I'd be a good candidate for it, and she said yes. So all I need is to get the funding for it, which will definately happen by March of next year when I'll be able to go on Medicare. So that's all good news.
Meanwhile, the MDS and I have laid out a medication plan. One, is to wean me off of Azilect. So I've reduced my dosage down to 0.5 mg from 1 mg. After a month on that, I'll go off it totally unless the dyskinesia goes away while on 0.5 mg dose. Then I'm going on 100 mg dose of Amantadine while continuing my 6 levadopa pills/day as I've done since late December of 2015.
The hope is cutting out the the Azilect will get rid of the dyskinesia since that's what started it and it has only provided marginal benefits for my symptoms anyway. And taking half of my original dose of Amantadine will reduce the side-effects to a more manageable level while still giving me positive benefits for my arm stiffness. Time will tell.
So far, I'm doing okay with it. I have periods of off time in the sixth hour, and recently I've had to take some extra levadopa dose before bedtime to be un-tremory enough to go to sleep. Otherwise my hands are vibrating under my pillow, keeping me awake. There is also some dyskinesia during the 5th hour of the dose, but it isn't as bad as previously, probably due to lowering the Azilect dosage.
That's the update for now. One last note. A good friend of mine has suggested setting up a FundMe account to get money for a DBS surgery sooner than next year. If that becomes a reality, I'll post the info about it on this blog, as well as other places.
Thanks for reading!
The biggest news is the Amantadine ER (extended release) trial. In case you've forgotten, last June my neurologist put me on Amantadine, in the hopes it might help my dyskinesia--a side effect of the levadopa medication used to control Parkinson's symptoms, which causes uncontrolled movements in many cases, of which I was one. Mostly for me, it was in the neck and left leg/toes. While the medication did have some positive benefits--reduced stiffness in the left arm and fingers, reduced off times on the levadopa--it didn't have quite the desired effect on my dyskinesia. It did reduce the peaks of dyskinesia that typically came around the 5th hour of my 6 hour dose of levadopa, but it also spread the dyskinesia in a minor to medium level through most of the dosage period of 6 hours, save about 30 minutes on each end. Each individual responds to medication in different ways, so you never know what you are going to get.
It also came with some decent side-effects: increased constipation, which I was able to control with fiber and magnesium, swelling of my legs, and sensitivity of my eyes to light--I had to buy prescription sun glasses to help with driving in bright sunlight. It was manageable, though the increased dyskinesia time was annoying even as not having the so high peak at the end was a blessing. A mixed bag overall. But I had kept on it because it did help my left arm and enabled me to type easier, which for me was a big benefit, being a writer and all.
If you've been a regular reader of this blog, you'll know back in December I signed up for a clinical trial for a new drug: Anantadine ER, an extended release version of the same drug I was on. In order to do that study, I had to get off of the normal Amantadine. In so doing, my PD symptoms became worse, so that I now had to take double the amount of levadopa I had been taking previously to get relief from the left arm stiffness and the tremors. Complicating that, I had some delays in starting the study due to some low platelet reading on my blood work, so had to get that checked out to make sure there was nothing bad going on. Turns out there wasn't, I just have a low platelet count. But it wasn't until some time in February that I was able to start taking the trial version of the drug.
Once I started taking it, I knew the first day I did not get the placebo. It caused the effect with my dyskinesia identical to the first day I started Amantadine last June. It spread my peak dyskinesia of around 30 minutes to last most of the 6 hour dose. Only since it was a higher amount--originally was on 200 mg/day, the trial dosage was either 250 mg/day or 350 mg/day, never found out which one I was on--the dyskinesia was more intense. As the study progressed, that seemed to increase. Likewise, my side-effects were there, but became worse. For example, the treatment I used to offset the constipation from the regular Amantadine was failing me a few weeks into the study. However, the peak dyskinesia was reduced significant and the left-arm stiffness was non-existent, as was any off times on the levadopa. My leg swelling seemed to be worse, and I was concerned it would get bad enough I'd have to stop participating in the study.
As it turned out, I didn't have to make that call. The pharmaceutical company funding the study decided to end the trial due to lack of participation. So as of the last couple of weeks, I've been off of the study drug and back on the regular Amantadine. For the moment I'm on half of my previous does of 200 mg/day. I'm hoping it will be enough without increasing it, but after a week (next Monday) I can increase it to 200 mg/day again if I need it.
The good news is the trial doctor is a Movement Disorder Specialist: a neurologist who specializes in neurological diseases that cause movement disorders like Parkinson's and Multiple Sclerosis. When the study was ending, she said she'd like to have me as a permanent patient. And knowing I didn't have insurance, she offered a special price for the visits, making it affordable.
That was a blessing on two fronts. One, everyone was saying I really needed to see a MDS rather than a general neurologist. I'd been trying to figure out how to initiate that since I'd need a referral from my current neurologist and he didn't seem to think an MDS was necessary. This made it simple. Two, my patient assistance at Scott & White is about to expire, like tomorrow, and thanks to my new disability payments, I'm pretty sure my income will be too much to allow me to qualify for it again, though I'll try. In which case, I'd have to pay over $250 for each visit to see my neurologists. So this means I can avoid that cost while getting to upgrade to a MDS doctor at the same time!
Additionally, it also means I'll now have an MDS who can help me get deep brain stimulation done when I'm financially ready. She's certified to do the programming once they've installed it in me. And a few weeks ago I asked her if I'd be a good candidate for it, and she said yes. So all I need is to get the funding for it, which will definately happen by March of next year when I'll be able to go on Medicare. So that's all good news.
Meanwhile, the MDS and I have laid out a medication plan. One, is to wean me off of Azilect. So I've reduced my dosage down to 0.5 mg from 1 mg. After a month on that, I'll go off it totally unless the dyskinesia goes away while on 0.5 mg dose. Then I'm going on 100 mg dose of Amantadine while continuing my 6 levadopa pills/day as I've done since late December of 2015.
The hope is cutting out the the Azilect will get rid of the dyskinesia since that's what started it and it has only provided marginal benefits for my symptoms anyway. And taking half of my original dose of Amantadine will reduce the side-effects to a more manageable level while still giving me positive benefits for my arm stiffness. Time will tell.
So far, I'm doing okay with it. I have periods of off time in the sixth hour, and recently I've had to take some extra levadopa dose before bedtime to be un-tremory enough to go to sleep. Otherwise my hands are vibrating under my pillow, keeping me awake. There is also some dyskinesia during the 5th hour of the dose, but it isn't as bad as previously, probably due to lowering the Azilect dosage.
That's the update for now. One last note. A good friend of mine has suggested setting up a FundMe account to get money for a DBS surgery sooner than next year. If that becomes a reality, I'll post the info about it on this blog, as well as other places.
Thanks for reading!
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 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.
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