Final Update: 7/29/2011

Hi Everyone:

If anyone tuned in last week, I’m sorry I had no update for you. I’m afraid that my blog has served its purpose well and is no longer necessary. In fact, I feel bad when I don’t have time to update it regularly. That’s completely counterproductive. So, this is the last blog that I plan until there are big changes in my condition or we hear of breakthroughs in treatment of PD.

I do have an update. I have responded well to the rasagiline (Azilect), which I take at bedtime. It makes me a little sleepy, and I’ve continued to have nights in which I don’t wake up at all. This is fabulous. As of this week, I am trying a One-A-Day form of Mirapex; this is in contrast to a form that I was taking six times a day. Obviously, this new form is much more convenient. Unfortunately, there is no generic form, so at present, the One-A-Day form costs a hundred dollars more per month. I'm testing it to see if it seems to be worth the extra money either in effects or convenience. So far I think it's not.

My brother' s band, Tree Frog, is playing in Lawrence tomorrow night. It'll be up big reunion with great music. Sandy and I will go in and then retire at a local hotel. The drive home is not long, but it will be nice that we don't have to make it late Saturday night.

Work is going well. I'm learning how much it had piled up over the weeks and months when I wasn't functioning nearly as well as I am these days. I'm really enjoying getting back to writing in particular. Also, I've been involving myself in projects in the clinic. This is something I haven't done for years. It's good for me, but it is taken up a lot of my time, so I'm glad it's over for the moment.

I want to thank all of you who took the time to tune into this blog as well as those who just took a part of their day to think about me and how I was doing. I'm still available at my e-mail account, mfey@KUMC.edu, and although I don't use it very much, you can always try me on Facebook.

Keep on the sunny side.

Marc

New Update, July 12, 2011

Hi Everyone:

I've had a really good week, so I'm pleased to publish a new posting on the blog. The big event was a trip to Akron to see Marshall and his new digs. We stayed at an Embassy Suites between Cleveland and Akron, and that proved to provide the best of both worlds. We ate our way out of Ohio, and we were able to take in several key attractions, like the Cleveland Indians, the rock 'n roll Hall of Fame, and Brandywine Falls. Plus, we got the best darn tour going of the University of Akron's excellent athletic facilities. Marshall was a great host, and we had a blast.

My medications continue doing the job really well. The Mirapex seemed to be working very well on its own. Now, the addition of rasagiline (Azilect) has made things even a little better. The new medication makes me a little drowsy which helps at bedtime, and it seems to keep me asleep even better than my sleep medication. Last night, for example, I slept a full 8 hours without arising at all. That's something I haven't had for some time. In general, I haven't been nearly as sleepy and lethargic throughout the day, which makes me more productive, which helps keep me more positive, and so on.

While we were in Akron, I worked out every morning using an elliptical cross trainer. I really liked the action on that machine, and it seemed to be much better on my lower back and feet than my NordicTrack skier. I was really intrigued because I have seen some video evidence suggesting that fast pedaling like on a bicycle has effects on the brain very similar to PD medications. In some cases people have even gotten off of medication for short periods by adding a bicycle to their exercise regimen. I need to do some searching and find these studies.

Anyway, when we got home, Sandy and I bought a much less expensive home model of an elliptical trainer than the one we used in Ohio. After spending most of the afternoon on Sunday and most of last evening screwing everything together, unscrewing things that weren't supposed to go together, and screwing them back correctly, everything's a go on our new machine. It can very easily be changed from a short ellipse (more like a bike) to a longer pattern (more like the “think” big mantra for those with PD), so I think it will be very useful. At least for now it's a new toy, and it's fun. It certainly can't hurt anything.

That's about all for this week. I hope you all are well. As Mother Maybelle always said, “Keep on the sunny side.”

Marc

Update for the week of June 27, 2011

Hi Everyone:

I'm a little late with this update, but I've got quite a bit of news. First, I promised some information on Roger McGuinn's performance at the Folly Theater a couple of weeks ago. For those of you who are not fans of the Byrds, I apologize. For me, this was big (To be healthy we need entertainment, right?) The concert was just McGuinn on electric and acoustic guitar and on banjo. His typically strong Dylan-esque voice was nowhere to be found, I'm afraid. Age has stripped him of his vocal range and power. On the other hand, he took the audience at the beautiful Folly for a trip through the history of music, the beginning of rock 'n roll, and most significantly, the development of the Byrds. He was personal, personable, fun, and funny as he told story after story, based mostly on his experiences. He and the band were unbelievably connected with musicians from other genres, and he played them all. For Sandy, my buddy Jim Aldritt, and me, it was a night to remember. Don't miss the opportunity to see him if you can.

Last week Sandy and I went to our former home of nine years, London, Ontario, for the wedding of Kate Huner. Kate was born just before we arrived in London in 1981. She and her sister, Erin, and her parents, Norm and Sue, lived next door to us for several years and we count them among our dearest friends. We've seen Kate over the years now and then, but it was a spectacle to see her as a striking woman in her bridal gown. She was truly beautiful, as was the wedding. The wedding gave us a good excuse to pal around for a few days with Carla Johnson and Jim Stouffer, exploring London and visiting some of our old haunts. Always a great time, made greater by the fact that I felt really good, and I slept well, even though I had no sleep medications with me. It was a really nice, relaxing four days.

Now, for the health situation. As most of you know, I had an appointment with my neurologist last Wednesday. I had nothing but good things to report to him, because for the last two or three weeks (since about the time I last published an update post on the blog), my medication, which at one point seemed to have lost its potency, has been doing the trick. My movement has been better and my thinking has been clearer. Dr. Pahwa agreed that my symptoms were not as great as they were three months or so ago at my last examination. Because of this, he decided to keep me on my current medication. It's a dopamine agonist, called Mirapex. It works by facilitating the uptake of dopamine by the receptor neurons. The new drug is rasagiline, brand name Azilect. The mechanism of this drug is completely different than Mirapex. It is an MAO type-B inhibitor. MAO Type-B is important in the metabolism of dopamine and increases with cell death. So I've got dopamine-producing cells that are dead and dying (due to PD), which increases the levels of MAO Type-B, which, in turn, increases the metabolism of dopamine. This is bad, because I've already got a shortage of dopamine. I need more, not less. By inhibiting MAO Type-B, rasagiline can limit its metabolic effects on dopamine, leaving more dopamine in my system.

I took an Azilect pill before bed last night. I haven't noticed much difference in my PD symptoms today, but importantly, I don't notice any side effects either. This is all good. Hopefully it will stay that way for a while.

Have a great Fourth of July holiday. Best to you and your families. I'll be back in a couple of weeks.

Take care,

Marc