The other day, I was looking around on my iPad and I found a daily tracking memo I was keeping for my neurologist from last March. I was struck by differences and the improvements I’ve made since then.
This time last year I was a total mess! I was housebound, almost sleepless at night, drowsy all day, and highly symptomatic most of the time. I had to keep a jar by my bed because I couldn’t always make it to the bathroom. (My wife, kids and cats just LOVED that!) If I did go out, I didn’t dare do so without my cane, because I quickly learned that if you fall apart in public and do not have a prop of some kind indicating that you are disabled, people will ignore you, ESPECIALLY when you ask for help!
But now? I’m sleeping much, much better. I still nap during the day, but more for relaxation than out of necessity. My symptoms are milder and more under control. I’m fine 80-90% of the time. I drive and take mass transit whenever I want to, sometimes even without my cane.
What did I do? Two things …
One: I put some serious pressure on my neurologist to do SOMETHING to relieve my symptoms and give me back some control. He’s great, but the changing dosages he was giving me were just not keeping pace with the progress of my PD. I went in totally un-medicated so he could see how bad I was. I’m taking a lot more meds now and have a little dyskinesia, but even that is mild at this point.
Two: I exercise 4-6 times a week in a health club with a trainer who is familiar with PD. I do aerobic (walking on treadmills mostly), machine and free weights, and balance exercises. I got into it by way of a PD study, but now that the study is over, I joined the health club and hired the trainer to keep me going. I don’t really like to exercise much, but I feel it’s becoming too important to my quality of life to ignore. One additional, benefit – I’ve lost 30 lbs!
We’re all different and I don’t know if any of this’ll work for you, but I thought I should share because when I browse this website, I see a lot of people feeling much the way I felt last year – suffering, and feeling hopeless and helpless.
Fight for yourself! Push your doctor! If you can’t join a health club, just find a way to move your body as much and as often as you can! Try something new (and let us all know if it helps). Things may improve, they may not. But at least you’ll have done something.
I also don’t know if I will be able to keep this up indefinitely. It scares me that an injury, a PD relapse, or some other distraction may slow me down or stop me, possibly sending me back where I started, or worse. (Feel free to lecture me if you see it start to happen.)
Let’s check in again in March, 2013 and see.