Parkinson's-related web pages

I was given a big chunk of these by a PD caregiver (thanks Susan for this list). I will add to the list as I find more.

Follow this link to view the list.

Note, the list is just about everything I've found so far on Parkinson's; Some I agree with, some I disagree with, and some I find "hokey".

ESC

Being a geek, the first thing I think of is the 'escape' key, but - that's not what this is referring to.

It's Embryonic Stem Cell research.

Since I've been diagnosed, I've been reading all I can about Parkinsons disease. That includes blogs from people with Parkinsons (referred to as PWPs). I read this posting; "I Have Parkinson's Disease - Why Are State Legislators Trying to Withhold ESC Research?" and I felt compelled to comment. The comments are moderated, and I neglected to keep a copy of my comments in case they didn't get published. Of course, they didn't get published.

I shouldn't be surprised. If someone submits a comment here that I find offensive, I'll decline to publish it. That's my right. This is my blog.

I still want to comment on the article though, and I have other rights. I have the right to publish my opinion here.

So I will.

Here's my stand on ESC research;

Life begins at conception.
An 'embryo' is a human life, and should be protected as such.
The ESC term is just a way of 'sanitizing' what's really happening; an unwanted human life is destroyed for research.

I would rather die without being cured of Parkinsons than be cured at the expense of another life. I'll have to be careful in the future which treatments I will allow to be used on me.

Judi and I watched the John Travolta movie "Phenomenom" recently. The end of the movie has a related sub-plot; the main character is going to die within days, and doctors ask for permission to research his brain while he's still alive. The potential good for mankind is enormous; the doctors would learn a great deal about the operation of the brain. And the patient would die. When the character refuses, the doctor goes to a judge and has him declared incompetent.

The character ends up escaping, and dies "at home", on his own terms.

We need to ensure that we make the same decisions for embryos, instead of making decisions for 'the good of mankind'

Exercise tactic change

I'm looking at all the exercise I've done so far as a warmup.

I gave blood on Thursday so I didn't do pushups on Friday, and ended up not doing any exercise. Friday I was reading an article I found on "patientslikeme" that talked about good symptom relief after vigorous exercise (80-90rpm on a bicycle). This morning I tried pushing very hard for one mile of biking. I did a 2:20 km pace rather than the 3:45 I had been doing. It was hard and I had to slow down a couple of times. I'm going to try adding to the distance daily. I tried to increase the pace on my walk too, but only managed a 12 minute / km pace - about the same as I've been doing.

I want to get to the point where I can notice the symptom relief mentioned in this article.

Starting to exercise

I've actually been "warming up" for about a month and a half, trying to work my way up and develop good, consistent habits.

Now, I've found a place called runningahead.com to record biking and running (even though I just walk). I love to record my results, so the site is a good resource for me.

I'm noticing more and more how my right arm doesn't swing while I walk. I'm trying to increase my walking pace, but I'm finding that I tend to settle back to a slower pace too easily. It's like having only one arm swinging isn't conducive to a fast pace. I'm going to try using a "hand grip" while I'm walking to give my right arm something to do.

Movement Disorders clinic - first visit

First off, I had a friend from church along for the ride. It was great to have someone to talk with on the way there, and especially to "debrief with" on the way back.

Dr. Jog is the head of the clinic, and he did my evaluation. There's a wide range of tests that he took me through some simple physical tasks;

• follow his finger with just my eyes
• point at his finger and then my nose, back and forth while he moves his finger
• a number of activities with first one hand and then the other, some resistance testing, and some "looseness" testing where he would move my arms while I (attempted to) relaxed
• He observed me walking, recover from being pushed off balance, and demonstrate an activity (blowing up a balloon) that he told me later was to evaluate cognitive ability.
  

Although he said that many of my symptoms were atypical for Parkinsons' (PD), he felt still that a diagnosis of PD was accurate for me. He has evaluated 15,000 patients, and there's no consistent set of symptoms in all people with PD.

He gave me two options;

1. Start taking medication to give me symptom relief. It's my choice, and for me to decide if the symptoms are severe enough that they keep me from having the quality of life I need or prevent me from working.
2. Participate in a study for a drug that may slow down the progression of PD. The subjects are in three groups; patients getting a high dose, a medium dose, and a placebo.
   

There would be no point in being in the study if I felt I would need to exercise option 1 within the next 12 to 18 months. Subjects in the study are patients not taking drugs for symptom relief.

I'll see the doctor in about 3 months (when some of the current stressful situations are over) and let him know whether I feel I can be a part of the study.

A long day with a late lunch

Judi had her liver surgery today. We were at the hospital at 6am. I ate breakfast before we left, then had a butter tart and a granola bar by about 10am. I drank a bottle of juice also.

I expected Judi's surgery to be done by 2pm, and that I would go get lunch when I knew she was out of surgery. I was talking with our pastor while waiting, and I couldn't get my leg to stop shaking. I was feeling pretty hungry, but I really wanted to know Judi was out of surgery. By about 3:45 I knew I really needed something, so I drank a coke. It helped quite a bit.

So, I'm finding that I'm also much more susceptible to shaking when I haven't eaten in too long.

Sometimes it's a few steps back

Generally I've been feeling like my symptoms are progressing forward, always forward. I've been sick with a fever for the last few days, and really noticed how my hand would have a long lasting (I guess 2 to 3 seconds) tremor after I would use my arm.
Today, I'm feeling a lot better (no more chills, etc. from the fever) and I'm feeling much more "relaxed" in my arm, leg, and face.
Maybe because it felt so bad for the past few days, I'm noticing even more when the symptoms take a few steps back.
My hand isn't completely still, but I'm noticing that my leg and face feel much better - and it feels great to have a feeling of "normal" for a while.