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  • What do you do to support yourself when your symptoms flare up?

    Posted by mary-beth-skylis on September 19, 2022 at 9:43 am

    Throughout the years, my dad has found ways to support himself when his Parkinson’s symptoms flare up. He might modify his medication, or take a few extra naps when he gets fatigued. 

    Recently, he got a little curious about adaptive clothing. And I’m always eager to learn about other ways a person with Parkinson’s might find some relief on particularly bad days. 

    What do you do to support yourself when your symptoms flare up?



    richard cooling replied 1 year, 6 months ago 2 Members · 2 Replies
  • 2 Replies
  • sherman-paskett

    Member
    September 20, 2022 at 12:57 am

    Umm… what an odd question. PD symptoms are so varied and unpredictable and the question so broad that I am not sure it can be answered without going into excruciating detail, but let me give a couple examples of how I adapt:

    • I am still driving, but I cannot drive when the meds are off. This limits me to short trips. If the meds wear off before I get home, I have to pop the pills and wait the 1/2 to 1 hour for them to kick in. What do I do in the meantime? The same thing everybody else does — I fiddle with my phone.
    • In the morning, when the meds are totally off, it is nearly impossible to get out of bed. Getting out of bed requires coordination of a number of muscle groups and the ability to move quickly enough to generate some momentum to propel one onto one’s feet. Can’t do that. It takes minutes to struggle to my feet and then the back pain amps up instantly, but I generally refuse to rely on any assistance. If I can’t do it myself, I would rather just lie there and wait to die.
    • The most frustrating aspect of PD to me is the loss of mobility. I was hoping that would not happen for another 6-10 years, but it is what it is. When the meds are off I try to find other things to do. My hands are largely unaffected by tremor, so I can type, though I can be very slow (5 words a minute at times), so I write. I write stories, I write books, I write about my core beliefs and how/why I formed them.

    These are but a few things I do to keep my sanity and keep going with PD.

  • richard cooling

    Member
    September 20, 2022 at 6:13 pm

    sherman-

    on rising from bed, i take levodopa as soon as i wake and take time to read the news; i sleep on satin to slide easily out of bed; once up, i drink strong coffee and move around every day in the heated pool at the Y.  this, together with an optimistic attitude helps me in the mornings.

    mary beth-

    naps and bed rest work best for me when symptoms flare up.  in the early  evening when my off period begins, i take low dose cbd/thc gummy bears for immobility, pain, and anxiety.  however, real care must be taken with thc because it can make you dizzy and expose you to a fall.  for this reason, i don’t recommend it to others.

     

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