What Aspects Of Parkinson's Are You Grateful For And Worried About Lately? | MyParkinsonsTeam

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What Aspects Of Parkinson's Are You Grateful For And Worried About Lately?
A MyParkinsonsTeam Member asked a question 💭
posted November 21, 2023
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A MyParkinsonsTeam Member

I'm not grateful for a single thing about Parkinson's! I hate it! I'm 81.and started having hand tremors about 6 years ago. Was misdiagnosed with essential tremor. Got another neurologist who said I had Parkinson's and put me on carbidopa/levidopa. I take 3 or 4 pills a day. Still have hand tremor, walk slow, poor balance. Can't say for sure if the pills help anything. Most symptoms other than tremor are same as symptoms of old age. I try to keep moving and not think about it. But. I wish I had my old self back. Who wouldn't?

posted November 24, 2023
A MyParkinsonsTeam Member

It just doesn't feel right calling what Parkinson's patients experience "depression". It is my opinion that to qualify as depression, the lowering of mood should be without obvious or understandable cause...thus grief at the loss of a loved one is not depression. Similarly a recently failing business, lost job, etc. are UNDERSTANDABLE causes of low mood.

Parkinson's is not a death sentence. It's a torture sentence. You will live a long time, and you will suffer a long time. In addition, the chemical responsible for joy, happiness, pleasure will be denied you, so that even if pain relief can remove the agony from your day, the best you are ever going to achieve is a sort of numbness.

I've just re-watched some of the Harry Potter movies, and it's very much put me in mind of the dementors..."it felt like all the happiness had drained from the world"...

So no, since I've been told my ongoing "life" is to be totally shit without respite, I do NOT think I am depressed.

I am understandably pissed off.

posted December 15, 2023 (edited)
A MyParkinsonsTeam Member

Getting PD was not my fault nor any familial link to me nor was I born with a bad gene for it. Though I volunteered to go into war and accepted the risk of dying in defense of my country, I did not agree to be harmed by military ignorance. The military unknowingly put me in a situation that put me at risk of getting PD and Cancer.
I am grateful every day that the military owned up to it and accepted 100% responsibility for it. They handle every bit of care for me and my family and have for years and will continue after my passing. They pay monthly for our needs and offer many necessities at no cost. They will educated and care for my family even after I pass.
I am not grateful nor happy for the years of life PD has stripped from me. Nor for the forced changes PD pushed on me. For the quality of our family life together

posted November 23, 2023
A MyParkinsonsTeam Member

Thanks for sharing Stewart, I share much of the same gratitude. I am not grateful for this frustrating journey but everyone has something in their lives that could do without. I'd rather have PD than cancer like my husband but I would sell my soul if we could pass on both.
With that said, I had to turn the page because I could not live with myself in the anger, frustration and hopelessness I feel into. This might sound crazy to you- it still does to me but, although I am not a Dr Phil fan but one day while clicking through channels I heard Dr Phil ask a guest if they wanted to be happy or write. That question made me stop and go Hmm.

I pondered this statement for a while and realized I was spending too much time convincing myself that having PD was awful, unfair and just not right. I think some time in that state was necessary, appropriate and well earned but then I heard Dr Phil's question and realized I was spending too much time convincing myself and others that PD was unjust. That is a fact but so what? I always hated when people said that but when I asked myself this question out of desperation, I had to come up with an answer, not an emotion. First I had to decide if there is life with or after a PD diagnosis. That answer did not come quickly or easily
for me. After much fighting against myself and PD, exhausted and nearly hopeless I decided I was bigger, stronger and smarter than PD and the battle and transition in me began.
Fast forward to today, I actually appreciate the person I have become and lessons I have learned only because of PD. Would I like to go back to pre-PD? Heck yes! But, until that happens, I have a formidable foe to deal with and a legend of warriors on my team. I'm sorry if this sounds absurd and hookey. In the past I thought that also but I have found my truth and I am a better person after being diagnosed and have had the blessing to interact with all of you amazing warriors. For all of this, I am grateful and fully aware I would not had this enormous personal growth if it hadn't been for this stinking PD journey.
Maria

posted November 22, 2023
A MyParkinsonsTeam Member

I'm grateful that this is the least offensive of the chronic neuro diseases and likely won't kill me directly.

I don't worry, I trust in God.

posted November 21, 2023

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