Weekly Update for the Week of 3/28/2011

Hi Everyone:

It's 8:25 PM on Sunday, March 27, 2011. I had a very good week; especially, a good weekend. Healthwise, I have successfully increased the dosage of my PD medication, Mirapex, to the prescribed level, .5 mg, three times a day. I first took the full dose Friday night, just before bed.

At half of this dose, which is what I was on last week, I was experiencing very reliable relief of my symptoms. This was especially notable at work, where I approached my teaching and research responsibilities with a zeal that has been missing for the past few weeks and months, and perhaps longer. I really had fun at work last week and found myself walking on the way to work from my car to my lab with a familiar spring in my step.

Just at the end of each dosage period, however, I could feel the grasp of the PD returning ever so slightly. I could feel this, especially in my head and jaw and thighs, which started to get really heavy. I have read that this pattern of the medication wearing off at the end of the dose period is common (although I suspect that ultimately, it's not good).

Since taking the full dose Friday night, I have had very limited symptoms. For the most part, the symptoms have not returned by the end of the current dose period. This is what I hope to get from the increased dosage. On the downside, however, this dose makes me very sleepy. I have high hopes that I will become accustomed to this dosage and will feel less sleepy as a result.

In closing, just to let you know how well I'm really doing for the moment, last night Sandy and I went to see a KC Repertory Theater production of Cabaret. Usually, I would avoid this and other musicals like the plague, especially if I were feeling sleepy. But I hadn't been out, and Sandy had earned some R&R for sure. As it turned out, I really liked this play, and the production was terrific. I really enjoyed myself.

I prepared all weekend, as did many other KU loyalists, for the big game against Virginia Commonwealth University this afternoon. As you know, the Jayhawks did not win. In one of the greatest upsets in the history of the NCAA tournament, they were dragged to defeat by a persistent, gritty VCU team. (VCU beat my Boilermakers, too!!!) I don't care what anyone says, the problem was not attitude or lack of mental preparation or fortitude. The team didn't disrespect VCU or underestimate their capabilities. They simply choked. They could not find the bottom of the basket. They couldn't tip it in; they couldn't jump shoot it in, nor could they make a free throw. They tried to dunk it in, but the referees weren't calling fouls, so even this was not consistently effective. No, I don't mean to disparage the team. In fact, I thank them for the brilliant, wildly entertaining season. When push comes to shove and one looks at the situation objectively, however, one must simply admit that a choke is a choke, and what the team did was indeed a choke. Oh well, it's only a few months before they start up again. I don't believe I'll hear anybody claiming that they'll take next year off. I certainly won't.

Thanks for taking the time from your day to check the blog and see what's going on in my life. I hope you've gleaned correctly, that at least for the past week, I've been coping very well. I love hearing from you too, so don't forget to drop me a line every now and then to let me know how you're doing.

All best,

Marc

Weekly Post, March 20, 2011

Hi Everyone:

This is the fourth in a series of posts on my blog about my health. It covers the period from March 14 to today, the 20^th. Here are my reports in the areas of greatest concern.

1.       I have continued my use of Remeron for sleep and mood and Mirapex for PD symptoms. I am in my second week of Mirapex, which means my dosage is twice that of last week, 0.25 mg, 3 times daily. I have noticed no really problematic side effects, and the benefits have been substantial.

2.       I continue to get good sleep each night. I HAVE been waking up, and getting back to sleep definitely has not been instantaneous, but this really is no longer an ongoing problem. When I lay down in bed now, I expect to fall asleep. What a relief!

3.       My voice quality and loudness continue to improve. I taught a 1 hour, 40 minute class, last Wednesday, without incident, despite the fact that the class is rather large, requiring me to project to students in the back of the room. I really had no signs of vocal fatigue at all.

4.       My other PD symptoms have diminished dramatically. I feel a lot more like myself; I have been more interested in music, and laughter can once again be heard around the Fey household. Most importantly, I think I’m performing at work at a level approximating my standard; I have more energy and passion and focus. This means I can get my productivity back on track, at least over the short term. This will have a major positive impact on my mood; everything affects everything else. In any case, in most regards, my status is very good, taking into consideration the nature of PD.

5.       I continue to do the things that I think will improve all aspects of my health, including perhaps, the progression of PD. I am exercising more and enjoying it more. I am practicing Qigong in the morning and at night, and this helps me to focus and relax. Then, I’ve got this blog and my correspondences with you all. Oh, yes, and I almost forgot, the Wichita State Shockers and Jayhawks basketball teams continue to contribute positively to my well being.(Who knows what would happen if they lost???) All of these things make me feel more like myself and keep me optimistic. If there’s any chance of slowing the progression of my disease, I’m sure a positive attitude and interactions with all of you are essential.

Thank you so much for continuing to look in on my health updates. I realize that the news is considerably more prosaic since the first posting. Perhaps, my posts are only of interest to my closest friends and family.  Whether or not this is true, it should help everyone if we have an understanding as to when new posts are available. My plan from here on out is to put up a new post, once a week, on Sunday, by 8:00 PM at the latest. If I have nothing to report, I’ll simply state as much. This way, those interested will get the update they seek, and they won’t be disappointed by checking the blog only to find that I’ve been too bored or too lazy to write.  

That’s it for tonight. The Jayhawks have total control over my mood as of tonight (well, the Shockers sure helped things this morning.) Rock Chalk.

Marc

3/14/2011

Hi Everyone:

It's Monday evening, March 14, and this is the third posting on this blog. Again I want to thank everyone for their support, their kind cards and e-mails, and, generally, for their interest and concern. I'm really benefiting from your continued support. Please keep it coming.

There's been a lot going on in the last few days, so I've got a lot to report.

For the last few weeks, my biggest problem has been difficulty in falling and staying asleep. On a given night, I could expect only an hour or two of light sleep. Four or five hours was an all-too-infrequent blessing. Consequently, I was suffering from fatigue significant enough to make it nearly impossible to do my work efficiently, if at all. A colleague of mine In Physical Therapy and Rehabilitation Science, Wen Liu, offered to let me join his class in Qigong. Qigong is an ancient form of meditation and breathing exercise that has been shown to have a relaxing effect that can diminish pain and improve sleep patterns. Like Tai Chi, it involves very slow, large, and smooth movements of the limbs. This should be desirable in cases of PD like mine. At this point, we've had two sessions of Qigong training. I look forward to the next six or eight weeks of practice under Dr. Liu's tutelage.

Although I was faithfully practicing Qigong and intend to continue practicing this art indefinitely, I got a surprise last Monday that will make it difficult to determine whether Qigong had or will have a direct effect on my sleep. The surprise was an e-mail from Dr. Pahwa's office indicating that there was an opening for an appointment on Tuesday. That's what I had been hoping for. So Sandy and I reported dutifully to the Parkinson's Center on Tuesday morning.

Well, you do have to be careful what you wish for. After a brief examination and consideration of all the details of my condition, Dr. Pahwa concluded that I do have a condition that is either PD or that falls within the family of PD. As far as I'm concerned, just having a diagnosis is an improvement. For example, with my updated report to Dr. Pahwa on my sleep pattern and his new diagnosis, he was able to prescribe two medications. The first is designed to help me sleep and to improve my mood. The second is a common PD drug, called Mirapex. Mirapex is a dopamine agonist used to target the direct symptoms of reduced levels of dopamine in the brain.

I used the first drug for three nights. I felt much better on the days after taking this drug, but I received little benefit in my sleeping, despite the clear sedating effect produced by the drug. I would be tired and groggy, then lay my head down on my pillow and feel wide awake. Friday night, however, I took a dose of Mirapex. This completely resolved the sleep issue. I slept until 9 AM Saturday morning and woke up feeling really quite good. I had a great day on Saturday. I felt lucid all day, very clearheaded, and found myself humming tunes, singing songs, singing in the shower, etc.; essentially being the goober that I usually am. After the game, (go Jayhawks!), Sandy and I attended a Janis Ian concert. It was truly beautiful. You've got to go to hear her, if you get a chance.  Took me back to the 60s and 70s, for sure. Despite the sleepy tone of most of the Ian's songs, I stayed awake and attentive, and enjoyed it immensely.

I won't bore you with the details, but the last two nights , yesterday and today have been good days, too. My mood has been good, my thinking has been clear, and I have felt like doing things again. Even my typing has been decidedly smoother and more error-free.

 So, the bottom line is that we'll work to get the Mirapex dose up to the most desirable level and monitor the effects on all my symptoms. In the meantime, I'll continue my Qigong, my cross-country ski machine workouts, and light weightlifting, and I intend to do more stretching. I think I'm as optimistic as this disease can allow a body to be; I know that every day won't be this way, so, I'm trying to soak it all in while I have the opportunity.  

Be well, and please check back in a week or so for another update. Also, it's much easier to return your e-mail messages now, so don't hesitate to drop me a line.

Take care,

Marc