Parkinson's Journey

Well, I think I’m onto something new.

Wednesday I went to the mailbox to get the mail. We never get much mail, not ‘good’ mail anyhow. It’s mostly bills and the stuff they’ve put recycling bins in the post office for. Junk.

There was an envelope, familiar and yet unexpected. From my doctor. Well, it wasn’t really from my doctor as much as the hospital that oversees the movement disorder center where he practices. In a matter-of-fact tone, it stated my doctor’s leaving the practice where he’s been since he first diagnosed me five years ago.

I went numb. All who have followed Parkinson’s Journey since I began it about three years ago, if you’ve read any post that mentioned my doctor, you know how I feel. I pushed the letter over to my husband who was standing next to me, and with an “I don’t want to talk about it” statement, walked away. I walked out the door. I walked out of reality for a few minutes.

How do you deal with something like that? Forget the fact that he said he’d go through this whole things with me to the end (I never actually would have held him to that). Forget the fact that he’s the only doctor I’ve ever trusted. Forget the fact that he’s the only doctor I’ve felt comfortable with from the start. Forget the fact that he’s the only doctor that really understood how I felt as a PD patient, having PD like issues himself. Forget the fact that he’s the only doctor I’ve ever had that I felt actually exhibited compassion for his patients. Forget the fact that preparation for DBS surgery had begun and the preliminary tests had taken place. Forget the fact that I could talk to him like a good friend and he had become a friend.

Maybe I shouldn’t have been so ‘attached’. However, when you find a doctor like that, how can you not when you feel he really cares for you as a human being and not merely as a patient?

So, I walked back in the house, wiped my eyes and went on, shoving this new information away to deal with another day.

I keep thinking about a guy I met through Facebook who has PD. He was diagnosed in 1995 and in 1998, he began cycling. As he puts it, “I found out that I could ride faster than the PD could.” He took his new sport very seriously. So seriously in fact, that he has ridden over 50,000 miles and still rides three days a week.

Recently, a study has been done to determine the effect that the ever-popular Wii has in helping patients with Parkinson’s disease.

Slashdot.com reported that after a four week study…tennis, bowling and boxing improved rigidity, movement, fine motor skills, and energy levels as well as decreasing the occurrence of depressions. The idea here is that researchers believe that combining exercise with video games helps to increase dopamine levels. The therapy with the Wii and PD’ers is gaining momentum so much so, that it’s being nicknamed ‘Wii-Hab’.

The Wii has already proven therapeutic with service men and women in terms of recovery therapy from wounds. One soldier who had returned from Kuwait after sustaining several injuries from a vehicular accident said that he enjoyed the Wii therapy sessions because it was fun, but added that he really was sore from the ‘workout’ when he finished.

It has also been used in retirement homes and for those who have suffered from strokes. The thought that researchers are excited about it is great. That there may be enough evidence from the studies that have already taken place to really go with this ‘toy’ as a great help in slowing the progression of Parkinson’s disease in some patients is a big step.

“We’re hoping to show a slowing of the progression of the disease and a decrease in medication while increasing function. If we can teach patients to exercise and do functional activities, maybe we can have them take less medications,” says Dr. Ben Herz, assistant professor of occupational therapy in the School of Allied Health Sciences and one half of the main team behind this study. One of Dr. Herz’s peers currently uses it for helping PD patients with timing and loosening up and another uses the Wii for coordination and balance issues.

So, what does this have to do with my doctor moving away? I don’t want to start over. I don’t want to go through having to go here and there until I find a doctor I’m comfortable with. I know, however, that I’ll have to.

In this transition time, I have made a decision. No, I’m not going to ride 50,000 miles in the next three years or climb Mt. Kilimanjaro, but it seems to be that when you’re more active in PD, the symptoms are less. When the symptoms are less, the medications are less, resulting in less side affects.

I wrote an article not long ago and mentioned that when Michael J. Fox is on the ice playing hockey, his tremors are not as prevalent, if at all. When I keep moving, my tremors take a nap. There’s something to be said for exercise in PD. Remember – it was stated that exercise, while playing the video games, did increase the dopamine levels in the brain.

While waiting for a new doctor and all that entails, I have decided to do everything in my power to get as healthy as possible. In another recent article, I wrote about the correlation between soda and RLS. My experiment will be to cut out the soda, the caffeine products, sweets, and/or anything that I feel is not good for me in order to become as healthy as possible. I am not vegetarian. I am not a health food nut. I am not a workout in a gym fanatic and don’t own a membership. I don’t have the means to buy a bike or a Wii. I hate lifting weights. Therefore, I guess I am going the old-fashioned route, which I actually prefer. I’m going to go back to walking every day and in the past, that has also helped me in making better eating choices.

I realize that some are in a place with their PD where exercise is literally next to impossible. However, I truly believe there is a vital connection for some, more than others, in exercising seriously with this little monster called PD and I hope I’m right. I also hope that I am one of those. If I am not, I will have lost nothing and gained a better health status. I know I will still have PD, but it will, God willing, affect less of me. I’ll keep you posted.

NOTE: If you’re interested in finding out more about the Wii for use with PD and what the reviewers have to say, click here: Wii Fit