Wednesday, December 31, 2008

HAPPY NEW YEAR

I've been diagnosed PD for 5 years now. It seems to be the tremor dominant variety of the disease, although an aunt also had PD, my Great Grandfather had a neurological disease then called senility and lastly my mother has something now being called old age previously called Alzheimer's disease. So it could just be that I have genetic PD with an exposure to pesticides in my childhood and again as a young adult (gun-trigger.)

My PD started out with loss of sense of smell and foot dragging, as well as a discrete tingling pain in my body and arms. After a year or two I started having a left arm tremor when I felt emotional: either good, bad or stress. Some times in a very stressful situation my arm would shake a lot but mostly it is a very gentle hardly noticeable hand tremor.

Before I was DXed I was pretty sure what I had so I started taking COQ10 450mg/day. After I was DXed, my neurologist had me increase the COQ10 to 1200mg/day. He also added Amantadine 200 mg/day. Eventually he had me add Mirapex and Selegiline. At this point I started having very complicated hallucination's and vivid dreams. I didn't get obsessed over gambling like many PD patients but I started thinking about women obsessively.

Meanwhile I experienced several symptoms that were new to me, double vision, swallowing difficulty , occasional difficultly speaking,stiffness in my left arm and greater rigidity in my whole body. About a year ago I started using a cane because of the pain my arthritis was causing when I walked.

After my neurologist moved away my Kaiser health plan sent me to another neurologist who told me the hallucinations I was experiencing weren't too bad and that I should "learn to live with them." He thought it was a trade-off worth trying. (Easy for him to say!) When I refused to go along with that he had his assistant try to convince me that Levodopa was my only other good alternative. I changed neurologists again and was prescribed Azilect 1 mg/day and added Dynacirc 10mg/day.

That was about 1 1/2 years ago. Since then I have added Turmeric 1200mg/day for my PD and osteoarthritis. Turmeric is a powerful herbal anti-inflammatory whose main component is curcumin, the significant ingredient. I also began taking Glutathione with NAC (N-Acetyl-L-Cysteine) as a sub lingual 450mg/day accompanied by Milk Thistle Extract.

My present condition is pretty decent considering. Biggest problems are sleeping, stiffness and rigidity, pain in left knee, cane dependency, depression and having a feeling of foreboding about the future.

As we go into the new year I plan to try to eliminate these problems by tyring new approaches or continuing ones that have helped. Massage therapy has helped reduce my stiffness very much, as has aqua therapy. I've started using the Nautlis machines at the aqua center and I will continue that in the new year. Massage with aqua therapy has been making my knee less painful, so I've started to wean myself from the cane.

You may have noticed I haven't called any of these things New Year's resolutions. I don't have a good track record in that department...check with me in a month.

A Good New Year to All,
Stephen

2 comments:

  1. Hi.. wonderful reading your matter of fact descriptions. Why have you not considered Levodopa with Carbidopa (Sinemet Plus)? I found it gave me symptomatic relief, except for balance. You seem to be taking mega doses of Co-Enzyme. Is that advisable? Isradipine does not seem to have done its magic. Trials have not even begun, sadly.

    Ken

    ReplyDelete
  2. don't take Sinemet because I am worried about the side effects that it creates latter on, if I start it now. If I need to I will start it in a few years, or perhaps there will be something better.
    The recomended dosage for CoQ10 is 1200mg if you are using it for PD. If you take too much you just pea it out according to my Neuro.

    Isradipine is a worry but I could feel that it had been helping me when I couldn't get it. I've read it is in Phase II with results due in April.

    ReplyDelete

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