10 things I hate about PD

[jeeves19]

Just musing after 4 years in a light hearted manner. Warning: don't over-analyse!

1. They don't really know the cause despite trillions being pumped into research.

2. Stem cell treatments are always '5 years down the line'.

3. Healthy strong individuals can get it when a person who doesn't take care of themselves doesn't.

4. How patients often know more than the clinicians.

5. How one supplement/protocol etc can help one PWP but not another.

6. It can bizarrely manifest itself after a trauma such as a car crash.

7. How support groups seem to start up then collapse.

8. How some PWP are so desperate for relief that they'll try all sorts of daft things.

9. How it's relentless and one faces a daily struggle.

10. How the public think that the disease is about a tremor.

Rant over.

[bassofspades]

Nailed it

[jeeves19 in reply to bassofspades]

Btw. Just put this on YT. Give me a view will you Bass as it’s my first posting 😂🙏

youtu.be/umBIM1mPihk(Not working as expected?)

[bassofspades in reply to jeeves19]

Great!!!! I really enjoyed this ! Love the tele, it sounds clear as bells. Wish we could jam

[jeeves19 in reply to bassofspades]

For sure Bass. Happy New Year btw 😊

[LearningAllICan in reply to jeeves19]

Awesome !

[mblongdon in reply to jeeves19]

I couldn't get it.

[Despe]

Jeeves,

Your ranting, ours too! Especially #3! Exercise all of his life and eating healthy, my husband still got PD. What he couldn't avoid was STRESS and Agent Orange.

[jeeves19 in reply to Despe]

Stress for me too I’d say Despe😕. Part of my make up sadly

[Hidden]

I really enjoyed listening to you. Thanks

[jeeves19 in reply to Hidden]

Thanks Lemur. Much appreciated. Not so easy for a PWP any more!

[bassofspades in reply to jeeves19]

I concur 🙄

[ddmagee1]

Great post!

[jeeves19 in reply to ddmagee1]

Thanks Doug

[laglag]

I agree with all of your points, especially the first one.

[jeeves19 in reply to laglag]

Thanks Debbie

[PalmSprings]

Nailed it, is right! Somehow this made me feel better this morning. I needed someone to articulate the frustrations of this nonsensical disease. And I’m sure we all could add just one more.

Like, 11. Apparently, it is a disease people do not die of. As all my very supportive friends tell me regularly. One wonderful friend has told me on numerous occasions, “My father died at 64 of heart failure”. I feel like saying “he had Parkinson’s, all ailments after that diagnosis stem from his Parkinson’s”.

The other thing this same friend tells me is that I am doing way better than her dad because her dad gave up as soon as he got the diagnosis. I feel that is what she saw from the outside. But people that don’t have the disease, can’t feel what we feel. I look from the outside like a very healthy person. People are shocked to hear I have Parkinson’s. And I know people are being nice when they say, “they can’t tell.” But I know that I have it. And when I die prematurely, I want it written that she died of Parkinson’s.

I have been a person with a good diet, good activity level, no weight problems, never smoked, never took unprescribed drugs and drank in moderation. What the hell!

And just as a side note, I don’t want to die young but I don’t want to die with my symptoms out of control either. I am essentially living like I was dying. There is a song somewhere in there, I believe.

[jeeves19]

I hear what you’re saying but the longer I have PD and the older I get, I’m getting sort of resigned to death. I don’t fancy getting to 80 something in poor health and living in a world where most of my old friends have died or don’t recognise me any more 😂. In addition I’m confused by the world and my place in it. Luckily I have a strong belief in God and an afterlife (but non religious). Lets see what happens. But it does seem to me that - for most at least - that real joy and happiness are experienced during our youth? Oh how I wish I was 21 again, even with the acne!

[Seamus6 in reply to jeeves19]

Agree with you there Jeeves, 16-26 best years of my my life, you don't think or worry about anything - you just do.

Family life is great but nothing beats the excitement and exuberance of those days. As John Peel quoted, "a teenage dream so hard to beat" 😎

[jeeves19 in reply to Seamus6]

Ha. Too true Seamus. Hope you’re doing well.

[gilesyassin in reply to jeeves19]

I have learned to take joy in smaller or more simple things. The song of a bird outside my window, a beautiful sunset, a tasty meal, or even 3 doses of my medicine working in a row..

Is this not "real joy"?

Life is beautiful!

[Zardoz]

I suggest a number 11 for your list: All the hopeful research studies end with some variation of "more research is necessary."

I am optimistic that we're close to a cure for Parkinson's.... in mice.

[dcpambrose]

Rightly listed out Jeeves.

[Limpmaster]

Thanks for this. Spot on.

[Cjbro2000]

If I may add one of my own: Every time we find a medication that finally has us functioning reasonably well, they go and change or discontinue the formula!