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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.

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 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.


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!


  1. Hi Rick,

    Thank you for the interesting update. Its always a pleasure to read the things you contribute. I see you are taking several supplements. You did not mention TUDCA but I understood from your latest reply to the infamous thread on the Parkinson forum that you still take it.
    I do too, among with others. Have you red about the Phillipson protocol? Its suggested by Oliver T Phillipson (neuroscientist from Oxford with over 40 years experience in PD etc) that a combo of OTC supplements might be beneficial  for PWP.
    The supplements are:
    alpha lipoic acid,
    coezyme Q10
    vitamin E,
    melatonine. (but perhaps only in case of insomnia)

    Just of late, I discovered that this info was shared on the forum too:  

    I am still without medication but often feel that it wont be long before I ask my MDS for something, probably L dopa to start with. My left arm/hand is becoming so clumsy, weak and trembly that it's more and more difficult to even lift light dumbells.
    When my workouts are compromized, I need something to be able to continue.In the mean time I move as much as possible, and incorporate daily meditation. During the sitting meditation, all trembling abates. Wonderful!
    My most interesting find was that by bouncing a tennis ball, my walking improved quite a bit., After 10 minutes or so, the left arm moves more freely and the steps are even, at a fairly high tempo.
    Just standing can be difficult at times, but tossing  the tennis ball between my hands improves balance.
    Keep up all the good stuff you're doing.

    best regards,

    1. Hi Hans,

      Yep, still taking TUCDA. So far, so good. I'll expand a little more on that in the next comment.

      Not sure I've heard of the Phillipson protocol, but I have taken most of those in the past. I believe the glutamate precursor I take has the first two in it, but I may be remembering incorrectly. The Q10 I used to take, but quit when I needed to trim due to cost in adding TUCDA, and because the studies done on it so far are not definitive that it does anything. Instead of Vit E, I take grapeseed which is also an effective antioxidant like Vit E, without the danger of Vit E building to toxic levels. Plus, if you eat right, you'll get plenty of Vit E. The last one I don't think I've ever taken. I sleep alright so far.

      On the medication front, of course your doctor will have his own opinion, but I think there is wisdom in starting with a dopamine agonist if you don't have any bad side-effects from it (it made me a bit zombified groggy) or Azilect starting out. That said, the consensus appears to be that l-dopa only becomes less effective over time due to disease progression, not due to how long you've been on it. Where delaying it can make a difference for many is in how soon a person gets dyskinesia due to taking it. But both of those first mentioned ones are only good by themselves in the early stages. Eventually they'll need to be supplemented with l-dopa. But maybe by then a wonder drug will get approved by the FDA. One can always hope.

      Interesting about the tennis ball. I was on my high school, and one semester in college, tennis team. Fun days.

      Thanks for the comments.

  2. Rick
    Where do you stand with TUDCA?

    1. Hi Unknown,

      I'm still taking it. I've adjusted down to 950 mg/day (3 pills) just to help cost. I can't say much about symptoms on it now due to the addition of other medications, I don't have a baseline to compare whether I've improved any, lessened any, or stayed the same. Playing around with other supplements too has obscured that. So I continue to take it by faith that it is helping since it helped initially, and that it is helping to slow this train down some. I'll probably keep taking it until a doctor will prescribe me UCDA or if when it does get clinical trials and if it is proven not effective in slowing the disease and/or no symptomatic benefits. But based on my experience, the experience of others, and the positive results on all the studies so far (most pre-clinical, except for one clinical trial on ALS), I have solid hope that the eventual trials will show benefits. Time will tell.

  3. Thank you for the update, Rick. You're in my daily thoughts and prayers!

    1. Thank you. And you know you're in mine as well.