As okay as can be expected, and maybe a bit more. We had 40 years together. She had Parkinson's disease, and I think toward the end I could get along without her better then she could get along without me. So I'd say we are dying in the right order.
She was a hematologist -- a doctor that treats blood disorders. Eventually her Parkinsons's disease made it impossible to treat patients any more. She hunk in there still, supervising the Hematology lab and reading blood slides. Eventually she had to let that go too -- involuntary movements at the microscope made her seasick.
After that she used her medical knowledge to keep up on research into Parkinsons's disease and present the latest developments at a Parkinsons's disease support group. She kept as active as she could toward the end.
It wasn't Parkinsons's that killed her, though. It was a leaky heart valve.
I find myself with a lot of free time now. I hadn't realized how much of my time was spent taking care of her. I'm only gradually finding worthwhile things to do.
I've had forty good years with her, and children from her, and that is a gift.
I extend my sympathies. Long relationships like that can be very precious - I hope you can smile knowing that you got 40 years of one. Us youngsters (*cough*) can but dream... (But I'm half way there!)
-- Great minds discuss ideas; average minds discuss events; small minds discuss people; the smallest discuss themselves
Friend and neighbor of ours was a speech therapist. Around age 45 she got a rapid onset degenerative brain-motor thing, first noticed it when her speech got slurry, within a year after that she was stuck in bed navigating a computer mouse by optical tracking of a ball on the end or her nose, and within 3 months of hitting that stage she was gone. Left her husband and teenage daughter behind - pretty rough thing, but... I question whether, from this day forward, I'd rather have 10 years of "good life" and a quick exit, or 20 years of something degenerative and crippling like Parkinson's? I'm pretty sure I still lean toward the rapid, relatively graceful exit - not that we get to choose.
Gwen lasted something like 13 years since first diagnosis. There are things you can do to keep Parkinson's at bay. There are drugs to supply the missing dopamine (which is very difficult to dose consistently for a lot of biological reasons). And there is exercise, which is quite effective.
She was very aggressively active, all the way to the end. When she was forced to abandon one productive activity, she found another. All the way until her heart failed.
The slow degeneration was there, but it wasn't as terrible as you made it sound. It certainly helped that, retired, I had the time to assist her.
Parkinsons is a broad term - my Grandfather was diagnosed with it for 20 years, but it didn't really do much to him beyond making it hard to write legibly... Michael J Fox, on the other hand, seems to be struggling quite a bit more. When the first DBS coverage hit 60 minutes, three generations of our family got together to watch it. The before/after improvement was indeed dramatic, but the after condition was still far worse than anything we have experienced in our family.
You're absolutely right about: use it or lose it. Staying as active as possible is the best protection for continued function of those activities.
My (probably oversimplified) understanding of the effect of exercise on Parkinson's is that you keep training neurons to do what the dying neurons used to do. Of course that stops when you run out of neurons.
That is one important factor. At work we did some experimental treatment of Parkinsons that involved improvement of circulation, that had some fairly dramatic effects, not a cure by any means, but a reduction in symptoms of "shuffle-gait" which increased ability to continue activities / slow the decline. Shutdown of circulation accompanies many conditions, including chronic bed rest, and accelerates decline of many functions.
(Score: 5, Interesting) by hendrikboom on Friday August 02 2019, @01:17PM (7 children)
As okay as can be expected, and maybe a bit more. We had 40 years together. She had Parkinson's disease, and I think toward the end I could get along without her better then she could get along without me. So I'd say we are dying in the right order.
She was a hematologist -- a doctor that treats blood disorders. Eventually her Parkinsons's disease made it impossible to treat patients any more. She hunk in there still, supervising the Hematology lab and reading blood slides. Eventually she had to let that go too -- involuntary movements at the microscope made her seasick.
After that she used her medical knowledge to keep up on research into Parkinsons's disease and present the latest developments at a Parkinsons's disease support group. She kept as active as she could toward the end.
It wasn't Parkinsons's that killed her, though. It was a leaky heart valve.
I find myself with a lot of free time now. I hadn't realized how much of my time was spent taking care of her. I'm only gradually finding worthwhile things to do.
I've had forty good years with her, and children from her, and that is a gift.
-- hendrik
(Score: 2) by FatPhil on Sunday August 04 2019, @11:58AM (1 child)
Great minds discuss ideas; average minds discuss events; small minds discuss people; the smallest discuss themselves
(Score: 3, Insightful) by hendrikboom on Tuesday August 06 2019, @03:39AM
I can smile, remembering the 40 years together. That doesn't stop me from crying sometimes too. Sometimes tears and laughter are the same thing.
(Score: 2) by JoeMerchant on Tuesday August 06 2019, @01:16AM (4 children)
Friend and neighbor of ours was a speech therapist. Around age 45 she got a rapid onset degenerative brain-motor thing, first noticed it when her speech got slurry, within a year after that she was stuck in bed navigating a computer mouse by optical tracking of a ball on the end or her nose, and within 3 months of hitting that stage she was gone. Left her husband and teenage daughter behind - pretty rough thing, but... I question whether, from this day forward, I'd rather have 10 years of "good life" and a quick exit, or 20 years of something degenerative and crippling like Parkinson's? I'm pretty sure I still lean toward the rapid, relatively graceful exit - not that we get to choose.
🌻🌻 [google.com]
(Score: 2) by hendrikboom on Tuesday August 06 2019, @04:37AM (3 children)
Gwen lasted something like 13 years since first diagnosis. There are things you can do to keep Parkinson's at bay. There are drugs to supply the missing dopamine (which is very difficult to dose consistently for a lot of biological reasons). And there is exercise, which is quite effective.
She was very aggressively active, all the way to the end. When she was forced to abandon one productive activity, she found another. All the way until her heart failed.
The slow degeneration was there, but it wasn't as terrible as you made it sound. It certainly helped that, retired, I had the time to assist her.
(Score: 2) by JoeMerchant on Tuesday August 06 2019, @01:11PM (2 children)
Parkinsons is a broad term - my Grandfather was diagnosed with it for 20 years, but it didn't really do much to him beyond making it hard to write legibly... Michael J Fox, on the other hand, seems to be struggling quite a bit more. When the first DBS coverage hit 60 minutes, three generations of our family got together to watch it. The before/after improvement was indeed dramatic, but the after condition was still far worse than anything we have experienced in our family.
You're absolutely right about: use it or lose it. Staying as active as possible is the best protection for continued function of those activities.
🌻🌻 [google.com]
(Score: 2) by hendrikboom on Tuesday August 06 2019, @02:06PM (1 child)
My (probably oversimplified) understanding of the effect of exercise on Parkinson's is that you keep training neurons to do what the dying neurons used to do. Of course that stops when you run out of neurons.
(Score: 2) by JoeMerchant on Tuesday August 06 2019, @02:48PM
That is one important factor. At work we did some experimental treatment of Parkinsons that involved improvement of circulation, that had some fairly dramatic effects, not a cure by any means, but a reduction in symptoms of "shuffle-gait" which increased ability to continue activities / slow the decline. Shutdown of circulation accompanies many conditions, including chronic bed rest, and accelerates decline of many functions.
🌻🌻 [google.com]