A Christmas Update

Hi Everyone:

I’m still celebrating the holidays and taking it easy at my sister’s house in Wichita. On Friday, I drove down to Wichita to pick up my dad and take him back to Kansas City. Shortly after we safely returned to town, Sandy and Alyssa went to the airport to pick up Marshall. We felt so fortunate to have my dad in town with the whole family for another Christmas day. We had a special time and hope you did, too.

Sandy sent out all of the Christmas cards the day before Christmas Eve, and the cards promised an update on my health for those inclined to venture to the hinterland to read my blog. Really, there’s been very little change in my condition over the past several months and year. When we’re talking about a progressive disease, like Parkinson’s, this is good, not bad. As promised, however, here’s the latest.

In my last post, I reported that I was trying a new form of the drug, Mirapex, which had just become available in an extended release form that is taken once a day. I have decided to use the far less convenient, but far cheaper alternative form of Mirapex, still available in generic form. This is usually taken in a dosage of two pills three times per day. Instead, what works best for me is a dosage of six single pills distributed fairly evenly across the day. I would miss at least half of my pills if it weren’t for my cell phone, which I program to alert me all six times. I then take a pill as soon as I can, giving me an even concentration across the day and evening.

With this regimen and a once daily dose of Azilect, I feel much more normal and far less symptomatic than without the medication or with any other dosage I’ve tried. It enables me to carry out virtually all of my professional responsibilities at work and do my chores and generally help Sandy out around the house, as usual. My typing is not normal, but before starting medication for Parkinson’s disease several months ago, I really hated to begin a letter or a paper or even an email; it was that difficult to hit the right keys without producing multiple letters or omitting letters in an effort to avoid the heavy, uncoordinated keystrokes. Now, there’s rarely a project that I defer out of consideration of typing problems. I have also gotten more proficient at using Dragon speech recognition software. This is even faster than I used to type; the only problem is that the program sometimes generates wild errors; for example, it loves to interpret some of my breathing or other random noises as WILL WILL WILL or HIM HIM HIM. This is mostly a problem for email, because I’m more apt not to pay it much attention, and I’m less likely to edit carefully. I apologize for this if you’ve seen it in one of my emails, and I’m especially sorry when the program’s interpretation is truly maniacal; I’ve seen some pretty psychotic-sounding ramblings in emails that I failed to edit adequately. Trust me, if you see this, it’s a reflection of my immature use of Dragon rather than my “other voices" talking.

My movement symptoms, then, are relatively unchanged; most of the time, I have the feeling of being a bit low on sugar, or cold, to the point of shivering. In short, I’m a little shaky with my arms and hands and even torso, at times.  These symptoms are bilateral, and they don’t really change when I make intentional movements. My legs are not affected as much, but if I miss a dose of medication, they may feel tired, as if I just got through with a tough workout. I played a couple of sets of tennis today with members of my family, and I didn’t play much differently than ever; my same old bad game. But this is a good indication that I’m hanging in there in terms of my movements.

A general symptom that affects my daily life more directly is fatigue, or sleepiness. I still feel sleepy much of the time, and this generally gets me in bed by 8:30 and asleep by 9:00 or before. I’m having much greater success falling asleep than I have had in the past, but it’s not unusual for me to be up by 2:00 – 4:00 AM, unable to fall back to sleep. At these times, I'm at once sleepy and sleepless. Since I’ve been off for Christmas, I’ve been faring much better in this area, and I’m hoping this is a trend that will continue into the new year.

To manage these movement and sleep issues, I work out, using either an elliptical trainer or my Nordic-track for about 45 minutes a day. I usually miss a day during the week, but try hard to be faithful. There’s no hard evidence that this makes a long-term difference, but there’s a growing body of weak evidence that exercise done to the level of exertion can diminish symptoms. It’s easy for me to believe these reports, because they are so close to my experience; if I’m a little shaky, a session on the elliptical machine can make me feel much better. I’m under no illusion that I’m  beating the disease this way, but this, along with the Azilect, could be slowing things down a bit.

The symptoms that are most troubling for me are most like those I associate with a severe sinus headache. This comes on several times during the day, and I’m certain it’s not directly related to the medication I’m taking. My head feels full and under pressure; sometimes I’m a little foggy and even a bit light-headed or dizzy. This slows me down at work, especially if I’m trying to be creative or to solve a difficult problem. The hardest thing for me to do is to put down the work at these times, take a brisk walk, or go home and exercise; these are the best solutions to the problem, though, and I’m getting better at taking my own best advice.

That’s pretty much the latest. I’ll publish another post after my next appointment with my neurologist in February. In the meantime, my spirits are still high, and I look forward to each day, as usual.

Please refer others interested in my condition to this blog. I thank you again for all of your concern and support.

Best,

Marc

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

Update for June, 2011

Hi Everyone:

I'm late once again, and once again I haven't got a lot of news. There are two events coming up some importance to me. First, Sandy and I are going to see Roger McGuinn, long-time leader of the Byrds, At the Folly Theater on June 17. The Byrds were certainly not greater than the Beatles, but no other band has had a greater effect on me( other than the Fab four) . McGuinn won't be rocking out at this event, but I'm really looking forward to it, nonetheless.

The other important event is an appointment with my neurologist on June 29th. I expect to be on some new medication after that date, but I really don't know. I expect to learn a lot at this visit. I'll share the outcome with you at the end of the month.

Things are really busy at work, however, and when I get my work done, I feel good. So I'm going to take a few weeks hiatus. I'll be back in touch at the end of the month with some real news.

Thanks for staying with me. I promise I'll be back in late June, and I'll continue this blog then.

Marc

Update for 5/30/2011

Hi Everyone:

Sandy and I didn't do a whole lot that was very special for the weekend, but I do have a positive report on my health. For each of the last three nights I've had a full night’s sleep, eight hours or thereabouts. I've been refreshingly clearheaded over this time. There are the occasional bouts of dizziness, but for the most part, I have felt better on these three consecutive days than on any other three consecutive days for months. In terms of movement, things have been fairly static and generally not too bad. It's the cloudiness in my head that causes me the greatest problems and concern. And whether it's sleep or adjustment to the medication or whatever, my condition has been much easier to deal with over the past few days.

I wish I could account for this improvement by progress in record and play of the Kansas City Royals. That's not been happening. Perhaps my improvement is due to a change in exercise routine. I have added some shadowboxing to my regular NordicTrack regimen, thanks to our Wii system. The aerobics, the balance, and the continually shifting footwork would seem to me to make this a good exercise. I'm having fun with it, anyway.

We DID see Bridesmaids this weekend. It's REALLY funny and definitely worth the money. On the other hand, I don't recommend taking your parents to see this one with you; or your kids either for that matter.

Thanks for staying in there with me. I'll have a new report next weekend.

Marc

Update for 5/23/2011

Hi Everyone:

I've had another pretty uneventful week. The best news is that Alyssa came back from Chicago where she just completed a six-week clinical practicum in physical therapy. Now, she's staying with friends in Lawrence who were celebrating their graduation last weekend. Sandy and I went to Lawrence yesterday to join the celebration.

That's a nice segue to the only real health events of the week. I attended my students' graduation ceremonies all day on Saturday. My head hurt, I felt dizzy and a little nauseous most of the day. I can't be certain that this feeling isn't due to the medication, but I don't know why it's so variable. In any case, we had some rough weather Saturday night; I was woken up by sirens, and we had tornado warnings for our county. That limited the sleep I got Saturday night, and I expected to pay for that all day yesterday. As it turned out, it was a great day; although I was sleepy, I felt pretty normal and, especially, clear-headed. I went to work in the morning and got a lot done. That helped me to relax throughout the afternoon and evening.

So, it was a really good weekend made especially so by Alyssa's safe return. The new week has started off positively, as well. I didn't sleep too well last night, so I'm sleepy this morning. On the other hand, I feel clear-headed and am looking forward to another good day and week. I hope you have the same.

Thanks for checking in.

Marc

Update for 5/15/2011

Hi Everyone:

I have little to report this week, so I'll be brief. Each day brings its challenges. Some days like today, I can do my work, exercises, chores around the house, etc. without much disturbance. I'm certianly not 100% of my old self, but with a little extra time, I can manage just fine. Other days, like yesterday, I just don't feel up to much. I did get a lot done yesterday, anyway, but I had the strange feelings in my head throughout the day, and I felt a bit nauseous most of the afternoon and evening.

My sleeping continues to improve, if not normalize. I still rise fairly early in the AM, say 2:00. I have just gone to taking an Ambien at that time and it helps me get another 3 or 4 hours of good rest. Fatigue is usually not a major issue; I hope we can continue that.

Classes are over tomorrow and I get a brief reprieve from that now. It's a mixed blessing. Teaching is one of my great challenges now, but it also seems to provide me with a lot of energy. Except on really difficult days, the teaching helps to keep me focused and is a source of great pleasure.

Thanks for tuning in. More next week.

Marc

Update for 5/10/2011

Hi Everyone:

Things have gotten so busy at work here at the end of the term that I forgot all about the blog. I hope I didn't inconvenience anyone. I don't have much to report or anything particularly clever to share with you, but I'll give you a brief update, largely just to document things.

Although I still feel the disease in my shoulders and legs, the medicine is clearly still working. I have much greater functionality of my hands than earlier in the year before the medication. This is good because it facilitates the typing I need to do when I can't get things done just with the speech recognition software. Physically, I feel like I can get done what I need to get done, and things are going pretty well.

Where I get frustrated is with the perceptions I have in my head. When these are mostly inactive, I really feel pretty good. Mornings, after a good sleep, are the best times, and the times I feel that most normal. Right now as I write this, I'm pretty comfortable at my workstation at work. Later in the day, however, the symptoms seem to always return. I feel a little dizzy, there is what feels like sinus pressure right behind my nose, pressure in my ears (this feels like I'm on a plane or cruising the mountains), and pressure or even a soreness in my jaw (as if I have hyper-extended it or I've just been talking too much). To top off this little cocktail, I sometimes feel a bit fuzzy on top of my head, like sometimes when I have the flu. Any combination of these symptoms is pretty distracting and bothersome. When I get these in the evening I just want to get in the hot tub for 20 min., do my Qigong, and go to bed. So the cycle begins.

That's all I have to report for today. Sorry I couldn't be a little bit more interesting and fun. Before closing, though, I should point out that Sunday, on Mother's Day, Sandy took me to a Royals game. It brought back old memories. We used to go to 20 games a year, and we dragged the kids along with this (well, Marshall can willingly; Alyssa, we dragged). Sandy did some of her best mothering keeping Alyssa occupied while at least a little bit keeping her own head on the game. She was one hell of a sport, I'll tell you that, and it was really special thinking about those old times at the ballpark.

I promise not to be so late next week. Until next time.

Marc

Update for 5/2/2011

Hi Everyone:

I'm late with this posting, as seems to be the usual lately, so I hope I didn't miss anyone. A lot of things have gone on this week that are significant to me.

First, I played in the Lenexa SERTOMA Club annual golf tournament on Wednesday. I haven't played a round of golf since January, which was before my diagnosis. I played in a foursome with my golf buddy, Hugh Catts, and two women from KUMC, Deb Brogden and Lou Loescher-Junge. We were a terrible team, but the company was great. It felt really good to be out on the links. I was able to stretch my legs and get some exercise, and my golf game was actually better than I expected. (For those of you who don't know, I have always sucked at the game, but that has never stopped me from playing). Mostly, it is good to know that if I want to play golf, PD is not a barrier; at least not now.

Second, Sandy is making sure I get out and see a little of the world, rather than wasting away in the house. We went to an art festival yesterday and then attended Monty Python's Spam-A-Lot last night. I had a really good night of sleep on Saturday, so I was well prepared for yesterday's activities. The art festival was fun (but freezing), and Spam-A-Lot was hilarious. See it if you have the chance. It kept me awake for a pretty late evening, and I didn't sleep well last night, but so far, so good this morning.

Third, I have had some concerns about my medication, Mirapex. The recommended dose for me is two .25 mg pills three times daily. That has never felt right to me, and my doctor told me it was acceptable to spread the six pills out over even intervals during the day. Recently, I've worried that the modified dose frequency was not doing the job either. So, I tried the recommended dosage again. Again, that didn't work. Neither the initial surge from first taking a dose nor the lasting effect of the dose was acceptable. So, I switched back and right now seem to be doing rather well again. Mirapex doesn't have as many side effects as other drugs, like levodopa and carbidopa, so it would be great if I could hold off on those drugs for as long as possible.

Fourth, after reading my initial post, my friend and PD researcher, Lori Ramig, sent me a video about an exercise program called LSVT Big. LSVT stands for Lee Silverman Voice Treatment. The original treatment is a voice treatment; it is now called LSVT Loud. I've known about it for a long time. LSVT Big is the new kid on the block and the new offering from LSVT Global. Lori sent me the website for LSVT Global, http://www.lsvtglobal.com/, and encouraged me to have a look. You can see for yourself what the program is about by checking out the videos on this website, but the basic idea of both programs is to challenge the constraints PD places on movement, posture, and balance. While these constraints lead to small, slow, restricted movement, the program encourages high amplitude, high intensity, high effort movement in direct opposition to the constraints of the disease. Basically you practice motions and postures that challenge what the disease is trying to make you do.

To make a long story short, when I first logged onto LSVT Global, there were utilities there to help one find certified instructors. At that time, however, I had no success in identifying anyone; even an instructor in some faraway, hard to get to place. The system just seemed to be down. This week, however, I checked, and not only are the utilities working, but I found a certified instructor at Lawrence Memorial hospital in Lawrence, just 45 min. or so from my house. I have made contact with the occupational therapist who has the LSVT training, so it looks like it could be only a matter of time before I can start the training. My mobility at this point is not that affected, but I want to do everything I can to slow down the effects of the disease and, wherever possible, to reverse the damage done.

I've already taken these ideas to heart. For aerobic exercise, I really still enjoy the NordicTrack, and would like to continue using it. I've modified my workout, however, to implement some of the ideas from programs like LSVT Big. The simplest change, for example, is to increase my stride and to increase the length of my pull with my arms; in other words, to increase my effort and the amplitude of my movements. Interestingly, this has implications for balance and postural adjustments, as well. A longer stride means I have to adjust my balance to that side in a more intricate manner that is otherwise necessary. It's actually fun getting more glide, just like it is on real cross-country skis. I have found that I can facilitate all of these processes by adjusting my stride to the rhythm of music I listen to as I exercise. If you haven't heard the Avett Brothers, I urge you to have a listen. (Thanks to Brad and Shelley Oja for turning me onto these guys). For my money though, their recent album is terrific. It has a really nice mix of simple rhythms that challenge me as I ski. I can move in single time or double-time or a mixture of the two for a nice change of pace. I find my workout time passes much more quickly when I do this than when I watch TV, and I make far more challenging movements with my skis. At some point this could be hazardous, but I'm really comfortable right now.

Okay, I'llgive you a break in stop now. I'm sure I lost my audience long ago. But the NordicTrack workout is just one example of what I'm trying to do to battle my disease process as best I can. I walk big (to Sandy's chagrin), I Qigong big, and I'm trying to think big whenever I move.

If you see me acting small, please slap my wrist. Thanks for being there.

Marc

April 25, 2011

Hi Everyone:

Thanks for checking in.We had a pretty dull week last week, I have no health news to report. I'm playing in a charity golf tournament on Wednesday. That should make for good fun. So, tune in next week.

Marc

April 18, 2011

Hi Everyone:

Sorry I didn't get this posted yesterday, but I just had too much to do. Sandy and I had a visit from two of our best old friends from our Wichita days, Linda Bowman and Jim McConnell. Linda and Jim live in Medford, Oregon, and they stopped off in Kansas City on their way to the Akron, Ohio, area. Jim is recently retired from the Forestry Service, so they purchased a new "teardrop" camper that they plan on pulling behind their Prius on their many future camping expeditions. To get what they wanted at the best price, they chose to drive halfway across the United States to pick up their little baby. This total lapse of good sense, which can be attributed almost completely to Jim, is our good fortune, because it meant that they could plan a stop in Kansas City.

I had a bit of a rough day on Friday; I seemed to be adapting to the effects of the Mirapex, so that I was feeling symptoms toward the end of each dosage interval. This all changed upon Linda and Jim's arrival, however. We introduced them to Oklahoma Joe's, and we talked until the wee hours of the night, which means I was in bed by about 11 PM. I was feeling great, though, and never felt symptomatic the rest the evening. Friends tend to affect us that way, don't they?

Saturday was an even bigger day. I had enrolled us all in a 5K charity run for pediatric cancer. Linda, Jim, Alyssa, and I did the 5K and Sandy walked a mile, and waited in the cold for us to return. I held the group back time-wise, but we finished together in a far from record time, still a bit cold but fulfilled; it's been a long time since I've run any distance at all, so it did seem a bit of an accomplishment to start my day. And the cause is so important.

After lunch, we drove Jim and Linda around the Power and Light District, which gave them a good view of the Sprint Center in Kansas City's latest downtown playground. It's beautiful down there and the day was turning equally bright and comfortable. Rather than stop, though, we moved on to the Country Club Plaza. This has been Kansas City's showpiece for 50 years, and we still enjoy walking around the area showing off Kansas City to our guests.

Saturday evening we had a great dinner at the blue Koi, one of our favorite restaurants in town. It seems that Sandy and I are always in the mood for some of their dumplings splashed generously with "awesome sauce". The dumplings were delicious as usual. Finally, we capped the evening with a concert by Bela Fleck and his entourage at Johnson County's Community College. Their music defies stylistic categorization, but all three musicians wowed us with their technical brilliance. And here I was at the end of a very long day, feeling very tired, very fulfilled, and basically, symptom-free (well, I had faithfully taken my Mirapex all day long, but the effects never appeared to be wearing off).

Yesterday, we had to give up our friends to the road, and Sandy and I lapsed back into our routine, trying to catch up on things that were already stacking up at work. I got some exercise in yesterday and already today, however, and the day is off to a great start.

So, it appears that I respond well to visits from friends. Be sure and book your reservations at hotel de Fey well in advance. We look forward to seeing you soon.

Marc

April 11, 2011 update

Hi Everyone:

Last week was especially uneventful; under the circumstances, that's a good thing. I have felt good emotionally, so I stopped taking my antidepressant/sleep medication last Sunday. I think this has left my mood unchanged; maybe, it's a little better, because I've been less sleepy. To top it off, my sleep has been good without the drugs.

The only thing I'm taking now is the PD drug, Mirapex, and a natural sleep aid called Beautyrest. Beautyrest is mostly melatonin and grape skin derivative. After five days, I look like a young Michael Douglas! I wish I had found this years ago!

I plan on running a 5K charity race next week with Alyssa and my long-time friends Linda Bowman and Jim McConnell from Oregon. Tune in for a report next week.

Have a great week.

Marc

April 4, 2011 update

Sorry that I'm a little late with this posting. I was prepared to put it up last night, but was so tired by nine o'clock, I just turned off the light and went to bed.

There's not a lot to report this week. Things were busy at work, and I handled the load reasonably well. I do get tired, though. I have class on Mondays and Wednesdays from 3:15 to 4:55. I'm completely bushed by the end of class, but again, I think I'm holding up reasonably well over the class period. My voice is really good, even by the end of class. I've got several manuscripts in progress, and they're moving at a much faster pace now than was the case a few weeks ago. As always, we're busy tracking down new participants for our ongoing studies.

I'm up to the full recommended dosage for my PD medication. I'm not sure that this is optimal, and this week I hope to test some other possibilities. Stay tuned.

I think everybody in the speech-language pathology universe must have seen the YouTube video below. If you haven't seen it, click it or paste it in your browser. It's a hoot!

http://www.madeformums.com/baby/twin-babies-talking-in-their-own-baby-language-becomes-youtube-hit/13087.html

Until next week,

Marc

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

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