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!


2 comments:

  1. Rick--- I am interested if you are still taking TUDCA---and if you are still having a positive response with it?

    I found you via MrFitz thread at the Parkison's board. I do not have Parkinson's but am doing research for a family friend with it. I do have Mitochondrial dysfunction--and am doing my own trial of TUDCA.

    I like that you are trying many avenues in your approach to treating Parkinson's---especially the exercise you incorporate into your daily routine. I would also like to know if you have tried a mini-trap with stabilizing bar? (Also called rebounder); Exerstrider walking poles?; or recumbent trike tricycle?

    Also, have you incorporated any nootropics into your supplement regime?

    I will continue to follow your blog for updates.

    Cheers,
    J.

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    Replies
    1. Hi Silverseas,

      Yes, I'm still taking TUCDA. I have added other drugs and supplements since starting TUCDA, so it would be hard to determine just how much beneficial effect they are having at this point short of stopping them again to see if there is any decline and starting them up again. Did that once to find out if benefits were from Azilect or TUCDA back in March, but I'm not interested in trying it again.

      I can say my disease has progressed some since starting TUCDA, but it may have slowed it down. No way to know how much worse I might be now if I'd not taken it. So I'm trusting that the benefits are still there and that it is helping to slow progression until studies come out saying it doesn't.

      I don't think I've tried any of the exercise tools you mentioned. But one of the advantages to a lot of what I am doing is variation in movement with music. That has shown to be better than repetitive motions like running or simply lifting weights. Zumba, Body Step, and Body Pump all involve exercise with a lot of variations set to music. Especially Zumba which is a type of dance. But like even in Body Pump doing squats, there will be slow moving squats, drop and hold and slow back up squats, regular speed squats, and half-way up squats (which are the most muscle fatiguing). They'll keep changing those up even when it is the focus of the exercise. Doesn't mean other types are not good for PD patients, just that varied movements is better.

      Closest prescription nootropics may have been the dopamine agonist, which made me zombie-like groggy. Supplement wise, I've used ginsing in the past, and ginko as well. I discontinued them because I couldn't tell it was doing anything and I needed to reduce cost. I also tried a nootropic supplement from Swansons but I don't recall what it was. Didn't notice any change. I took coconut oil on a regular basis for a long time but didn't notice any improvement nor reduction since slacking off on it this year.

      The CDP Chloine I mentioned in my last blog post has nootropic qualities as well. Not sure I can tell a difference, but I'm still taking it.

      Lastly, I've drunk a lot of coffee in my time, but have had to cut back on it since it generally makes my tremors worse. I don't know that it is the caffeine causing it, however, since my home roasted coffee seems to not do that as much. But I still drink far less coffee now than I used to.

      Hope that answers your questions.

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