This Time Last Year …

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.

Thanks, Mike

9 Replies

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  • That's great! I try to maintain a movement/exercise routine. I've found it beneficial. I do have periods of increased physical fatigue and have leaned to listen to my body. Before PD, I would have pushed myself to follow my routine and I would most likely have felt great afterward. Now, regardless of what my brain is telling me, I listen to my body. On those days when the PD phantom is making things tough, I rest as much as I can--which is never enough!

  • MichaelOM & chrismw

    100% agree with you. EXERCISES & WALKING keep moving very important.

    Postive attitude is essential.

    take care

  • Michael,

    'Feel free to lecture me'.........I used to be a headteacher...........are you sure??

    Keep writing, stay positive - my glass is always half full, Angela

  • Keep moving forward. /exercise is so important. Where I live there are no gyms but I have warm weather all year so I do yardwork. Still, I am not keeping as fit as I would like. Trying to recruit a hiking buddy.

    Any chance part of the difference could be due to change of stress levels too?

  • Good advice Mike. I have a new Doctor who is a Parkinson and movement specialist. She has been adjusting my meds,which has helped me to improve a lot.I excercise on my exercise bike,play golf and line dance. Now am doing a therapy called LSVT Big,It is very intensive 1 hour 4 days a week with the therapist and the other 3 days I have to do it at home.You can look

    it up just google LSVTglobal.Exercise,good attitude,no stress and rest are very important, We have to keep fighting "Life is not waiting for the storm to pass....Its about dancing in th rain" PUSH pray until something happens.

  • So true. Good for you . I'm still walking with the walker but walking ! with a walking 'class' preparing for the Parkinson's Walk in Central Park NYC April 28. OUr team is BOLD MOVES. I'll post something soon.

  • I walk a lot, try to exercise daily and look after my two grandaughters about three days a week. However, I still cannot lose any weight. I also garden on good days and have recently started knitting again to help control my tremor in the evenings. I also do jigsaws and read a lot. I have 3 exercise DVD's which I alternate.

  • I'm with all of you. Exercise and better eating have helped me.

    I am loosing weight, only about 1 lb a month and am currently stuck at the same weight too long.

    Thanks for sharing and being so encouraging.

  • i found that exercise helps most of the time. I had attended an exercise class 2 days a week for 2 years, plus weights at home and had lost 12 pounds. But a setback in January messed up my routine. Striatal toe and foot on my affected side threw me for a loop. Lots of pain, couldn't exercise, gained my weight back quickly. Two months later foot is somewhat better and trying to get back into my routine but my body tells me to slow down. I'll keep w orking at it and appreciating the good days.

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