Here is an encouraging update. Please remember that I am not a doctor or anyone remotely qualified to give advice. I just want to report my experience in the hopes that others may also benefit from my successes and failures, possibly without going through the valley of the shadow of death personally.

After several months of pretty severe withdrawal from the drugs I was taking in the prior posts my body has settled into a somewhat normal routine. I wake on purpose at 5:30 a.m. and immediately take 1 Amantadine 100 mg and 1 81mg aspirin and 1 benztropine 1 mg along with Ubiquinol 300 mg supplement. I then have a bowl of raisin bran or similar cereal with milk and banana with one or two cups of coffee. This blunts the strong "on" I was getting before and smooths the medicine. Although this is a bit of limiting my abilities it makes the jerky muscle movements far more manageable or nonexistent and allows me to drive and function with greater ease.

I take the 2 capsules of Rytary 23.75/95 mg 5 times a day starting at 6 a.m. every three hours. This is very convenient and is even more so using my timer on my cell phone (I can't believe I missed this for this long!).

Around 2:30 I take another 1 Amantadine 100 mg and 1 benztropine 1 mg. At 6 p.m. is my last Rytary and only have my Ubiquinol 300 mg supplement which I take at bedtime.

The results? Much smoother and consistent days. Gone are the symptoms which concerned me just a few months ago. Gone are the problems sleeping. Gone is the restless leg syndrome. I have my life back, at least for now.

EMOTION

I do want to point out at least as a side note that emotion really changed the effectiveness of the meds. When I had to speak to anyone, and especially if I had to argue the muscle stiffness and jerkiness were right there. Not too bad and manageable but uncomfortable non the less.

Some years back I was in Guatemala and traveled around the country quite extensively. I never feared much for my safety until the day I got shot. That incident opened my eyes to the reality of what is possible, and every time I come into a similar situation my senses become alert to the danger. I never experienced that before the shooting but now I think about it a lot.

It became the same with Parkinsons. I was afraid that trying different meds might make it impossible to reclaim lost ground. I am happy to say that is not true, at least not for me. I am better than I was 19 months ago!

My biggest fear several months ago was that I might die for a totally preventable reason. And it angered me that in all likelihood my death would be listed as "complications due to Parkinsons". But it wasn't the Parkinsons it was the medicine which caused heart failure! And we are giving this medicine to 10 year olds to take for life!

My second biggest fear was that as I tried different meds and symptoms seemed to be worsening I would be losing ground which I could not regain. This turned out to be totally false as I have now regained much of what the statin drugs had taken away.

I will keep this post updated every couple months. Hope it helps you on your journey.

Jim