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

A Rundown on My Health

Hi Everyone:

At least since ASHA last November and by some accounts as early as February 2010, some of you have noticed differences in my mood, countenance, and movement that caused you serious concerns about my health. I guess I was in denial about these things because I didn't acknowledge the possibility of serious problems until after ASHA, even though I was aware of some symptoms, most certainly a change in my ability to type. In any case, after ASHA, I sought care at KUMC and have been receiving it since. I apologize to all of you for not talking with you about it sooner, but frankly, I didn't know what to say. My hope was that the symptoms would go away one by one and we could attribute my problems to stress, rhinitis, maybe even mild depression, treat them symptomatically and I'd be back in the saddle. Though we still don't know much about the situation, I'm no longer too optimistic about that. I've never blogged about anything and I don't relish talking about myself, but I thank my doctor, Allen Greiner, for the obvious suggestion. Frankly, it feels good finally letting everyone know that I'm not really okay.

Here are some of the symptoms I realize I was having once I took stock of everything late November and early December (again I now know things were going on before then, but I wasn't buying for the most part).

1. Shaking and discoordination of my arms and hands. These and all motor symptoms have been uniformaly bilateral. The most affected activity from this is my typing.

2. I don't feel generally weak, but I AM tired by the end of the day; more than usual. When the symptoms are at their worst, I feel like I'm dragging weights around with my arms and shoulders and thighs or like I've just had a good workout with weights and my muscles are all worn out. Again, they don't seem to be, but that's how they feel.

3. Muscle spasms in my arms and back. These are weird but not painful. When they're active, they certainly contribute to a feeling of lack of muscular control.

4. A kind of numbness or stiffness in the face and head. The best way I can describe this is the feeling I get when I take off a ball cap; feels like it's still there. I feel this around the eyes and forehead; sometimes in my jaw! This is one of the most disturbing symptoms because it is accompanied by a cognitive fogginess; it definitely affects my ability to focus and attend and recall.

5. Insomnia. My other symptoms are often worse with lack of sleep, so this exacerbates the situation.

6. My general mood has been flat and has lacked the "effervescence" that I see as a defining feature of ME.

By early December, I had been checked out by Dr. Greiner, who arranged some blood work, an MRI and an evaluation by the head of our Parkinson's Disease Center at KUMC. The blood work and MRI were negative and the PD evaluation was inconclusive. Dr. Pahwa was unable to determine that I have PD and we rescheduled an evaluation after March. Some new technology useful in determining dopamine levels should be available by then.

In the meantime, we have treated the symptoms I have experienced. For example, I was seen by two ENTs to evaluate sinus pressure and grogginess and my hoarse voice. The sinuses were treated with a steroid spray, and my voice disorder was determined to be due to presbylaryngis, a bowing of the folds due to aging. Because this seriously affected my teaching, I had thyroplasty (silastic medialization of the vocal folds) last Friday. So far, the results of this appear to be very good.

I have had an eye exam and am having the new prescription that I got late last year corrected. My symptoms are at their worst when I wear my new (uncorrected) glasses. Most importantly, I THOUGHT I could eliminate the groggy feeling by not wearing the new glasses, but this isn't completely true. I have a new prescription, but don't have the glasses yet.

I am getting regular chiropractic treatments. These greatly relieve my chronic back and especially neck problem (which was raging at ASHA time 2010). If you're not a believer in chiropractic, consider this a weekly massage for my "mental health."

I expect this blog to fulfill two purposes. First, it will keep all interested parties up to date on my condition. Many of you have heard reports that I have PD. Truth is, I very well may. To this very day, though, no doctor has diagnosed my condition. So, if someone asks about what you know, please say that "Marc seems to have PD or some other movement disorder, but we don't know for sure what it is yet." That seems to me to reflect the reality pretty well without mincing words about the gravity of the situation. Second, it will purge me of the guilt and anxiety and stress for not letting people know what's going on. I no longer have to hide my symptoms. As difficult as it is for me to admit that I'm at a stage where I'm no longer a picture of health, I feel much better for posting this blog and expect a similar catharsis each time I post something. (Alyssa says I'm "coming out," and I suppose I am.)

Whether you're a close friend, family, colleague, client, student, or wayward homeless person, I thank you deeply for caring enough to check in and will be pleased to see you back. Feel free to share the address with anyone. I appreciate your kind thoughts and positive energy. And I am especially pleased that now that we've got this blog as a place to talk about my health, we can use our other contacts to talk about other things.

All best,

Marc