Update for 2-27-2011

My first post shared with everyone the latest uncertain details of my health. As I said in that post, I had two reasons for managing this blog. The first was to keep family, friends, colleagues, students, and others up to date on my condition and the second was to make myself feel better by coming clean with what we know about my health problems. That post has been so successful in both regards, I hardly know where to begin with the second.

So, let me start with a giant “thank you.” Thanks for reading the first post, for sharing it with others, for taking the time to share your kind and encouraging thoughts and experiences (whether by public or private comment), and for signing on to the blog. In the best of times, I don’t believe I could adequately express how touched I have been by your response or how comforted I have been by your words and showing of concern. I’m blessed to have such friends.

Here’s the latest news.

My voice continues to improve almost daily. With the healing of my surgical wounds, I’m much more able to modulate volume and pitch. With any luck for Sandy, I’ll have my bluegrass voice back any day now.

This past Wednesday (2-23-11), I was given a clean bill of health from my surgeon to exercise. Since then, I’ve been taking it slow on the Nordic Track, but I’ve been able to get in 30 min each day, anyway. A little cardio has made me feel a LOT better. I hope to gradually ramp things up a bit this week. This should have a positive impact on my sleeping problems, too, which continues to be a source of significant difficulty; easily the biggest non-movement problem I’m experiencing.

At work, I’m probably most consistently negatively affected by problems with typing. So, next week, I’ll be installing “Dragon: Naturally Speaking” voice-to-print software on my work computer. Although the reviews I’ve read indicate that the program has some issues, it apparently does the basic job of listening to a voice and converting it to type extremely well. That will make a lot of things I do, including responding to your emails, easier. We’ll be giving it a try some time this week.

Probably most significantly, there has been progress in the approval of a diagnostic procedure for Parkinson’s Disease called DaTSCAN. In technical terms on found on the internet, “DaTSCAN is indicated for visualization of the dopamine transporter (DaT) distribution within the striata by single photon emission computed tomography (SPECT) imaging in patients presenting with symptoms or signs suggestive of dopaminergic neurodegeneration.” As I understand it, in this procedure, they inject a radioactive drug called iodine-123. This marker binds to the dopamine transport protein (DaT), which can then be seen, using an imaging technique, called SPECT. If normal amounts of dopamine are present, this can be seen in the SPECT image in the areas of the brain where dopamine is normally produced. This would indicate that some condition other than Parkinson’s Disease is causing my movement problems. If there is a limited (or missing) image of the striatum, this would be a good indication that dopamine producing cells have died and that PD is present. In short, this is a more accurate way to detect PD than has existed in the past. The procedure was only recently approved by the FDA, although it has been used in other places, like Europe, since 2000. More importantly, it has gone through all but the final phase of approval at KUMC. It appears that I’m a suitable candidate for this procedure, but we’ll be verifying that soon, I hope. If I am, I could be one of the first to have the procedure at KUMC.

To treat me optimally, it is important to know whether my problems are related to PD or not. I confess to being unclear about all the alternatives to PD in conditions like mine, and I hope to be making some progress in this area soon.

Thanks again for caring. I’ll be back to report any news. Until then, take care.

Marc