Refusal of the Call

It’s interesting how a diagnosis like Parkinson’s can affect a person. I was in a state of denial. I was pretty sure that with a little more research we would find out that my problem was something far more benign and treatable than Parkinson’s.

Enrolling in Clinical Trials

I enrolled in every single clinical trial and study I qualified for. Spending all of that time with MDS’ would give me the opportunity to prove to at least one of them that this was just a bad joke.

One of those trials was for the drug, Phenylbutyrate. It had already been FDA certified for about 30 years in the treatment of urea cycle disorders. Researchers believed that it could be repurposed for PD patients. The hard part was that I could not be on any Parkinson’s drugs and withdrawing from Pramipexole was awful. I could not sit for more than about 15 minutes and I felt as though I had drunk 10 cups of coffee all day and all night. The only comfort and relief I got was when I had a massage.

Unfortunately, I never did have a doctor tell me that I didn’t have PD. But I still would recommend these studies to everyone, whether they have Parkinson’s or not. It’s so important that they have the necessary people and information to come up with a cure or at least better therapies for this awful disorder.

I tried some CAM (Complementary Alternative Medicine.) For one of them I had to drive to and from Denver every other day to have the Resonator work its magnetic magic on my feet. It didn’t work. I found a protocol for electroacupuncture, and the doctors I worked with in the Chiro office applied it to me every other day. We’re talking about electrified needles placed in my head! Again, I didn’t see a change.

Probably the most disillusioning experience I had was to make an appointment with a PA who claimed to be a functional neurologist. I told her all of the things I’d been doing to either help me get better or at least to slow down the normal progression. She very matter of factly explained to me, in an extremely condescending manner, that none of my attempts with CAM were going to work because, “don’t you realize that you have a progressive degenerative disease.” It felt like I’d been kicked in the teeth.

Surrounded By Negativity

I began to notice a pattern here. Day to day I was surrounded by negativity – mostly my own; and my life was all about me.

I needed to change the subject matter soon, before I drove myself crazy. Funny how eventually Parkinson’s would turn my gaze outward. But that was an uncomfortably long transition.