‘I Wouldn’t Wish This on Anyone’

 

So said a good friend of mine, speaking to me of the disease which was soon to take away the independence he so much valued.  He has Parkinson’s disease, and shortly after that he fell at home and it took him an hour to get to the phone and call his nearest friend to come get him up. It was a couple of months later that he surrendered and moved into an assisted living facility.  Now he is, most unwillingly, transitioning to a nursing home so he can obtain a higher level of attention and care. He has steadfastly refused to get the jab or wear a mask, so I don’t know how that’s going to fly. Even when I took him to the doctor’s office he was the one without a mask.

I first met him at church, where he was a faithful member. As time went on attendance became more and more difficult for him, and it’s been over a year since he was seen at church.  He’s a good guy and loves kids:  Retired about 20 years ago from his job as Principal of a local county High School. You can guess how many of them think to visit, but he tells good stories about many. Never heard him speak ill of a one, even the troublemakers.

I don’t know how long he has, and I’m thinking that Parkinson’s doesn’t affect everyone the same way.  Some of you have in the not-so-distant past lost someone you love to this illness, so you can particularly understand this: He needs friends.

Now I’m not seeking pen pals for my friend (he couldn’t write anyhow), but to suggest showing you care to that lonely person that just quietly, desperately, needs a faithful friend.

Published in Healthcare
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  1. sawatdeeka Member
    sawatdeeka
    @sawatdeeka

    Pick me, pick me!  Just let me know what to do. 

    • #1
  2. She Member
    She
    @She

    Beautiful post.  Yes.

    • #2
  3. CarolJoy, Not So Easy To Kill Coolidge
    CarolJoy, Not So Easy To Kill
    @CarolJoy

    Yes please let me know where to write via PM system here.

    My mom ended up having this damn disease – although at least she was in her eighties when it hit.

    • #3
  4. Doug Kimball Thatcher
    Doug Kimball
    @DougKimball

    Though it is said to cause dementia, from my experience, Parkinson’s is more likely to cause chronic low blood pressure, especially after eating and when rising from a sitting position, which might seem to be dementia, but it is not.  Low heart rate is another symptom and the two together are extremely debilitating.  The brain simply goes on hold until blood flow and heart rate improve, which invariably happens once the GI tract slows down after digestion  These “episodes” are often confused with small strokes, but they aren’t.   Parkinson’s can also cause halucinations, often frightening.  From my experience, these issues seemed to be related to dopamine levels, high after treatment or naturally.  Paranoia and wild visions can occur and can be difficult to deal with.  There does comes a point where Parkinson’s patients stop responding to dopamine treatment, or where increases makes the halucinations unbearable.  It sounds like your friend is approaching that point.  The disease soon takes a difficult turn, very much like end stage ALS.  Pallitive care is about all that you can do at that point.   But your friend is still in there and aware.  Music and books are great, delivered by Alexa.  In any case, Parkinson’s is a difficult diagnosis.  Sorry for your friend.

    • #4
  5. Chuck Thatcher
    Chuck
    @Chuckles

    Doug Kimball (View Comment):

    Though is said to cause dementia, from my experience, it is more likely to cause chronic low blood pressure, especially after eating and when rising from a sitting position, which might seem to be dementia, but it is not. Low heart rate is another symptom and the two together are extremely debilitating. The brain simply goes on hold until blood flow and heart rate improve, which invariably happens once the GI tract slows down after digestion These “episodes” are often confused with small strokes, but they aren’t. Parkinson’s can also cause halucinations, often frightening. From my experience, these issues seemed to be related to dopamine levels, high after treatment or naturally. Paranoia and wild visions can occur and can be difficult to deal with. There does comes a point where Parkinson’s patients stop responding to dopamine treatment, or where increases makes the halucinations unbearable. It sounds like your friend is approaching that point. The disease soon takes a difficult turn, very much like end stage ALS. Pallitive care is about all that you can do at that point. But your friend is still in there and aware. Music and books are great, delivered by Alexa. In any case, Parkinson’s is a difficult diagnosis. Sorry for your friend.

     

    Actually I thought of your father as I wrote this.

    • #5
  6. Chuck Thatcher
    Chuck
    @Chuckles

    sawatdeeka (View Comment):

    Pick me, pick me! Just let me know what to do.

    The man is a prince, and I would have certainly picked you or @caroljoy to be penpals for him – but, as I said, he can’t write anyhow.  I’ll talk to him and encourage him and let you know if anything comes of it.

    • #6
  7. Chuck Thatcher
    Chuck
    @Chuckles

    CarolJoy, Not So Easy To Kill (View Comment):

    Yes please let me know where to write via PM system here.

    My mom ended up having this damn disease – although at least she was in her eighties when it hit.

    I didn’t know that about your mom!  (And I think you described this disease correctly.)

    • #7
  8. Sandy Member
    Sandy
    @Sandy

    Chuck, I recently ran across this website which promotes something called “inclined bed therapy” for general health but even for conditions like Parkinson’s and MS. https://inclinedbedtherapy.com/forum/parkinson-s-disease/22-parkinson-s-disease-p-d-responds-to-inclined-bed-therapy-ibt  Sounds crazy, I know, and all the reports are anecdotal, but it seems harmless to me and it’s an inexpensive DIY procedure.  It’s long been used to treat GERD, but not much else. The idea, developed by a self-educated Brit, is that our circulatory system operates properly only with the help of gravity, the effect of which is removed if you sleep in a flat position, but operates if you incline the bed to 5 degrees, which means lifting the head end by about 6″.  The whole bed, not just the upper half, is inclined by using books or bricks or furniture raisers under the head end.  I’ve just started trying it myself (not for Parkinson’s) by using this product, which is intended to help GERD, which I also do not have.  Maybe worth a moment of your time. 

     

     

    • #8
  9. Doug Kimball Thatcher
    Doug Kimball
    @DougKimball

    Sandy (View Comment):

    Chuck, I recently ran across this website which promotes something called “inclined bed therapy” for general health but even for conditions like Parkinson’s and MS. https://inclinedbedtherapy.com/forum/parkinson-s-disease/22-parkinson-s-disease-p-d-responds-to-inclined-bed-therapy-ibt Sounds crazy, I know, and all the reports are anecdotal, but it seems harmless to me and it’s an inexpensive DIY procedure. It’s long been used to treat GERD, but not much else. The idea, developed by a self-educated Brit, is that our circulatory system operates properly only with the help of gravity, the effect of which is removed if you sleep in a flat position, but operates if you incline the bed to 5 degrees, which means lifting the head end by about 6″. The whole bed, not just the upper half, is inclined by using books or bricks or furniture raisers under the head end. I’ve just started trying it myself (not for Parkinson’s) by using this product, which is intended to help GERD, which I also do not have. Maybe worth a moment of your time.

     

     

    I second this recommendation.  Also, as the disease progresses, breathing can become difficult.  A slight move toward the left side seems to help with that.

    • #9
  10. Charlotte Member
    Charlotte
    @Charlotte

    My 80-year-old papa has had it for about ten years. He has been able to keep some major symptoms at bay, but man does it suck and the amount of medication he is taking is kind of alarming. This is not the retirement he and my mom had envisioned.

    • #10
  11. Chuck Thatcher
    Chuck
    @Chuckles

    Update: Mr. Duke had less time than I thought.  He went to be with the Lord as of 12:30 PM today.

    • #11
  12. sawatdeeka Member
    sawatdeeka
    @sawatdeeka

    I’m sorry to hear that.

    • #12
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