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Beau's Mom

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Beau's Mom last won the day on March 18

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About Beau's Mom

  • Rank
    Dianne
  • Birthday 01/23/1953

Profile Information

  • Gender
    Female
  • Location
    Seattle, WA
  • Interests
    Staying happy, joyous and free from limitations set by my own limited thinking. Even with PD, and sometimes because of PD, life can be grand!!!

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4,255 profile views
  1. Beau's Mom

    Weakness

    Gardiner, it's hard to see the progression, even though we know it's inevitable. I discussed it today with my Rehab Psychologist. She has great faith in my resilience but I don't know that I'll be able to stand the pain if my dystonia gets much worse. I have to remind myself that my survival rate for getting through tough times is 100% so far. Birlest, I have learned from experience to never exercise without Sinemet on board. I did it just once. I couldn't talk or move for several hours until my frozen stomach relaxed enough to allow some Sinemet to get to the small intestine to be absorbed. Dianne
  2. I agree with otolorin. A Movement Disorders Specialist {MDS} is the best person to see for determining a PD diagnosis. The sooner the better. By the time we show symptoms, we have already lost 60 to 80% of our dopamine-producing brain cells. Loss of dopamine is what causes the symptoms you're describing. Even before you see an MDS, start exercising regularly. Exercise is the only thing proven to delay the progression of PD. You can call the Helpline Number at the top of the page to find an MDS closest to you. I had tremor at age 27. Despite adding other symptoms {constipation, anxiety, depression, inability to smile on the right side of my face, increasing tremors and even loss of balance) and seeing several doctors over the next three decades, I was not diagnosed until I was 57, in 2010. Best wishes to you. Please keep us posted. Dianne
  3. Dear Tom, That's quite a harrowing story! I'm so glad you made it home safely. It takes great courage to admit an error in thinking. Thanks for sharing the story with us, and the lesson learned as well. Dianne
  4. Kevin, have you ever been evaluated by a good Podiatrist? There may be other foot issues going on that a podiatrist can help with.
  5. I haven't needed it again. Turned out to be a hammertoe. Most insurance companies will not pay for it again for three months. Dianne
  6. I've had Botox in my feet with no untoward after effects. It takes a week for it to work, so if you hike the next day, your feet will still be tied in knots. Dianne
  7. Beau's Mom

    duopa pump

    noah, I didn't have freezing before using Duopa. In the past year, I've experienced sticky feet when I walk with my walker. It's caused by disease progression, not by Duopa. As for thinking, it's a big part of my tiredness. I have to take time every day to consciously relax my mind through meditation. The app I use most is Meditation Oasis by Mary and Richard Maddux. I've been using it for 10 years and it still works. Dianne
  8. Beau's Mom

    duopa pump

    No, Mihai. I've never had trouble with the tube kinking. I've had two infections around the tube, one requiring hospitalization last year. Dianne
  9. Beau's Mom

    duopa pump

    Very good description of the Duopa experience, Mihai. Settings are very individualized. That's something you'll never get with oral carb/levo. My current settings are as follows: AM loading dose 7.0 mL, continuous rate of 1.8 mL, an extra dose of 2.0 mL every two hours with a limit of 5/day. I rarely use more than one extra dose per day. Dianne
  10. o, Happy Day when jb was born! Thanks for the light you bring to us all. Have a wonderful birthday, jb. Dianne
  11. Beau's Mom

    duopa pump

    Gardener, you can still enjoy a soak in the tub. You simply disconnect the pump while you bathe and reconnect it when you are finished. I unhook mine for showers for up to 30 minutes. If you soak longer, you might start to feel off and need help hooking it up again. If you feel off, you can always give yourself an extra dose when you're reconnected. I the odd one out as far as sleep goes. I barely move when I sleep. Dianne
  12. Beau's Mom

    duopa pump

    Thanks, Mihai. I'm very happy for you. If they find a cure for my bleeding diathesis, DBS may extend my independence at some point in the future. Dianne
  13. Beau's Mom

    duopa pump

    Thanks, Mihai, for sharing your Duopa journey with us. Two years ago, I switched from the cross-body shoulder bag to the fanny pack because of shoulder pain. I have an appointment with my MDS next week and plan to get the pump settings readjusted as I am experiencing more painful dystonia in my neck and shoulders. I hope the DBS works as well for you. Dianne
  14. jb, my family went to Grandma's house for dinner each Sunday afternoon. We watched Walt Disney after we got home. Very fond memories indeed. Dianne
  15. One of our former members, Jenette Eck, lost her battle with Parkinson's yesterday. She stopped posting on this Forum in 2016 and I saw her from time to time on Facebook until last month. jb, you probably remember her. Others may as well. I looked back over some of her posts this afternoon. We have lost friends and will lose more. For today, I am keeping on. Just wanted to let let everyone know I cherish each and every one of you. Dianne
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