Doctor visit

This past Thursday was my visit at Dr Jog's office. I mentioned that the Sinemet isn't lasting long enough or kicking in fast enough. We're adding Pramipexole (aka Mirapex). I haven't started it yet. Probably the most concerning side effect is drowsiness - especially while driving.

My Sinemet schedule is; 1.5 at 4:30, 6:35, 9:10, 11:45, 14:20, and 16:55.

I hope to participate in a study that will try to more objectively evaluate symptom levels using motion capture. There is an article on the hospital website.

We went on a Caribbean cruise, which was very nice, and I did 'try' to do some exercise. When we got back winter and that constant feeling of having a cold coming on was my excuse. I need to get back on the exercise bike. If I can force myself to get up in the morning, maybe I can delay adding the Mirapex to the medication mix.

Time for an update

My participation in the CoQ10 study is over. I had my last visit with the research nurse a few weeks ago, and now I'm just a regular PD patient. And this means ...... I've started medication. The doctor evaluated me and thought I didn't really need to be on meds yet, so I explained how I had difficulty driving because of the stiffness (dystonia) in my right foot. Then he said that since this is a safety issue, he'd rather put me on the Cadillac pill (Sinemet) than risk using anything less effective and have me get in an accident. I'm still interested in left foot driving solutions, but I'll see how this goes for a while first. I may even be putting off giving up driving a manual transmission for a while too.

How's it going you ask? Well, first thing is I'm typing this with two hands. It's not easy, but I'm getting through it. My right hand hasn't typed in a long time, or done much of anything else, so I'm getting used to just using my hand also. I'm feeling quite a bit better, and I only reached the full dose (you ramp up) a few days ago. My foot is alot less stiff, my arm is a lot less stiff, even my voice feels stronger. I haven't felt this normal in quite a while.

I've been working since the end of November, starting in Holland, MI and now thankfully in Troy, MI. So I'm crossing the border again every day. Work has been very busy, and exercise has unfortunately taken a back seat. We did get Wii Fit, and I've tried it out a bit. Judi is more disciplined though, and she's enjoying it.

Climbing Trees

I don't think my wife got a picture, but yesterday I climbed a tree. Well, at least a little bit - with a ladder head start. We've neglected the cherry tree at the front of our house for too long, and it's grown way too tall. It's too close to the house and I've considered taking it out completely. We still may do that.

I started out just cutting some of the branches that were easy to access from the ladder. Then I looked at it again, assessed my energy, and climbed in. I hung on with my affected arm and cut a few higher branches. Hurricane Earls' wind blew me around a bit. Every once in a while I thought; "what am I doing? I have Parkinson's." Somehow I was able to hang on and cut out about two-thirds of the branches. They're now laying in the driveway waiting for me to clean them up.

I think God is trying to tell me I can do more. And - that He'll take care of me even if I do something stupid.

What follows an announcement?

Hey everybody, I'm going to bike 3 times a day!


Translation = Hey everybody, I'm going to skip biking for the next few days.

Why do I never see it coming?

Three-a-days

I'm trying a new approach, with the goal of increasing my pace. Instead of one bike workout per day, I'm shooting for three. I'm trying to keep my pace over 15 mph. So far, it's a goal. I'm getting there.

Today's chart;

50 miles

I did it!

Now, what's the next goal?

More miles

Aiming for 7.5 miles each day now - targeting a 50 mile week. This'll be the first time.

I was easily upset over a work email this week, and when I tried to reply the shaking in my right hand was so bad it kept me from typing with my left! I have voice recognition software that I'm slowly learning to use, but I needed to use it that day. I think that was the worst my hand has ever shook.

Stress sure does bring out the best in us.

Oh, and Happy Canada Day!

Summer 2010 update

I haven't noticed a lot of change since March. I'm getting a little faster at one-handed typing. I'm back into biking, almost every day - being at home has taken away my excuses. I've only missed two days in the past month, and I'm doing about 6 miles per day.

 Judi and I are taking a vacation in July - at a cottage on Hall's Lake with her mom, brother and sister in-law. There's a paddle boat there, so we'll be able to keep pedalling.

Exercise, exercise, exercise

I went back to work on a 6 month contract, AND I'm trying to complete some programming projects that I picked up while I was laid off - so I've gone from a lazy summer to a crazy-busy fall.

My frequency of exercise had gotten so bad (infrequent) that I even started to notice symptoms getting significantly worse. There were times at work when my hand would shake so much I would need to put it back down on my lap and concentrate on relaxing before 'trying again' to type.

I knew I needed to get back on the bike. I've been more consistent in the last few days than I have for the previous month, and I can definitely feel the difference.

A great friend at church has offered to help me commit to getting up in the morning on time to exercise. It's such a blessing to have good people 'in my corner'.

I've been asked - do you bike indoors or outdoors? It's indoors - this is my bike;

With my balance, it's best to be low to the ground. It's also a big timesaver as I don't have to get dressed or even put shoes on to get started - and I don't need a helmet  :-)

Here's my biking chart from runningahead.com. Notice the big gaps. I'm targeting consistency as well as pace for the next while.

Exercise gaps

It seems even unemployed people get busier in the fall. I biked today, but the last time was a full week ago. In some ways it feels like starting over, but I did have some good 'sprints' and ended up with a respectable pace.
Tomorrow I have an interview in Waterloo, and Friday a meeting in Troy so those two days I won't be biking either  :-(

CoQ10 Screening

Today was my "screening" visit for a CoEnzymeQ10 study I hope to be participating in. Basically it involved handing over some blood and urine (mine), and answering some questions. Some of the cognitive questions are really indicative of where PD has the potential to take someone (along the dimentia route). Questions like; what city are we in? what day is it? (actually, that was a tough one - I never know what day it is). My brain was working pretty well today so I got 31 correct answers (out of 31 questions - woohoo!).
If there's anything drastically wrong with my blood or urine, I could still be excluded from the study - but then would be working on fixing some other health problem :-)
To stay in the study, I can't start any symptom relief medication (the study lasts for 16 months) - so I'll have to get more comfortable with this shaking, and get my exercise level up to higher levels so that "runners high" can kick in more often. Dropping out of the study would be a big waste, as I would still be included as one of the 600 study participants but my results wouldn't be used.

Couch to 5k (c25k) Week 1 Day 1

Today was the day I found out whether I could run or not. I started the Couch to 5k program. The first week involves alternating running for 60 seconds and walking for 90 seconds. It starts with a 5 minute walk to warm up before the first run.
I stretched, started the walking portion, and psyched myself up to run. I can't really remember, but it feels like years since I've done any kind of a run - even for a short distance. So I wondered - can I run? Well, I found out I can - sort of. My left leg was doing a great job, but my right leg was doing a very poor job of making any kind of a soft landing. It would pretty much "slam" down. I thought; "I'm going to break something". So, bottom line - I ran 60 seconds. Most of the other "runs" were a brisk walk with a long stride, and some were breaks. By the time the recording of Christian music I had downloaded was done, I had gone 2.5km. I switched to my regular programming and walked home. My total walk was 4.7km. I'm not sure I've completely given up on running, but I'm just going to stick with the brisk walk in place of the run segments for now, and see where that takes me.

Daily Exercise Update

The 12's have moved on to 15 --> 15 pushups, 20 crunches, 20 leg lifts, 15 reverse leg lifts, and 15 more pushups. Then 5 miles on the exercise bike and .... here comes the commitment; I downloaded mp3 files with Christian music to guide me through the Couch to 5k program. Now it remains to be seen if the headphones will stay on my head while running.

Nine weeks from now I should be able to run 5k.

Exercise

This article emphasizes the importance of exercise. I'm working on a routine of 12 pushups (working up to 20 on all the twelves), 20 crunches, 12 forward leg lifts, 12 reverse leg lifts, and 12 more pushups. Then I do 3.5 miles on the exercise bike, and intend to go for a 5km walk.

I want to be positive about approaches that avoid drugs, but the cynic in me wonders what's really going on with Dr. David Heydrick. I got his name from a mailing from Robert Rodgers - which I read but am very skeptical of. David has an article here (pdf link); where he's happy about his DBS, but other articles only seem to be promoting exercise. Maybe he's like the rest of us; grasping at straws looking for relief from PD.

I'm going to stick with exercise, and try to keep an open mind. I've started reading this ebook (pdf link), and we'll see where it takes me.

I'm hoping to participate in a CoQ10 study, which would involve NOT being on meds for 18 months, so the rule from Dr. Janice Walton-Hadlock at pdrecovery.org won't be broken.

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.