So, you have been diagnosed with Young Onset Parkinson’s Disease or YOPD for short. According to the neuro line drawers, you must be between the ages of 21 and 50 to gain membership in the exclusive 4% club. That is the percentage of Parkinson’s patients who have a YOPD diagnosis. I was 39 when I found out and that was 18 years ago. Hmmm. Now that I am thinking about it, I never received my ten-year pin.
I get a profound sense of frustration from much of the above...am I right?
Made realise how fortunate I've been to live until 75 before PD was diagnosed.
"Doctors who claim that we are just 10 years away from a cure are irrationally hopeful."
But this surely all to do with money rather than the complexity of the disease itself?
If PD were to get the same kind of funding as cancer there would be progress?
Develop a relationship with a gifted neurologist who will take the time to listen to you.
This sounds like a great idea but how on earth do you do this if you are not on private medicine?
Listen to Movers and Shakers recent episode it seems that in the UK there is a shortage of neurologists because it is such a hard medicine to study!!
Find a good talk therapist.
Again money money - virtually impossible to get on NHS
As in most areas of life there will be huge gulf between the experience of relatively privileged PWP's like us and those with lower income lower social capital...no surprises there but a dismal thought.
Frustration tinged with a little resignation or vice versa? Yes . . . but I tend to understate how I feel.
I also tend to forget that we have very different healthcare systems. I cannot speak to yours but in the US, the insurance bureaucracy barrier between doctor and patient becomes unfathomable on certain treatment issues, so even if you are fortunate enough to find a gifted movement disorder specialist, just make sure that she is gifted in insurance negotiations.
The "cure within 10 years" comment does sound a little blunt, but I heard it from two different doctors about two different diseases: Hemophilia and Parkinson's. That was almost 20 years ago. I will grant that researchers are close to a genetic fix for Hemophilia.
You are absolutely right about research money making the difference and Hemophilia is the perfect example. People with Hemophilia benefitted greatly from the HIV/AIDS research at the turn of the century. My son infuses himself twice weekly with synthetic clotting factor born from that research and he does well.
I am thankful for Michael J. Fox and the $1billion that he has raised for PD, but that amount is a drop in the bucket compared to the $3billion per year that the US government spends on HIV research. Compare that to the $270million per year spent on PD research.
Not that I am suggesting taking funding from any other medical research funding to go toward PD but consider this: the diagnosis method for Parkinson's has not changed in a hundred years (I exaggerate). But really!
I had to laugh (and cry a bit) at your comment about feeling fortunate to have been diagnosed at 75 . . . You are never the right age to get a Parkinson's diagnosis.
Hi Tommy - I’m touched that you cried at my ‘fortunate to be diagnosed at 75’ - I was tired when I wrote and am struggling with a new keyboard.* which means I make even more typos than usual - and had not too much bandwidth left for clarity of expression. But you will know what I meant. Compared to what you and MJF** and all the other have to deal with I do feel fortunate.
* i decided to get a laptop stand a separate keyboard so my posture would be better- hadn’t reckoned with the challenge that the slight difference in layout would pose. Ah well.
“
** I watched a couple of recent interviews with MJF and found them cheering seems inappropriate so I better say inspirational- in that to see how much more challenged he is and his ability to face the hell of it and still turn a joke.
Hi Tommy
I get a profound sense of frustration from much of the above...am I right?
Made realise how fortunate I've been to live until 75 before PD was diagnosed.
"Doctors who claim that we are just 10 years away from a cure are irrationally hopeful."
But this surely all to do with money rather than the complexity of the disease itself?
If PD were to get the same kind of funding as cancer there would be progress?
Develop a relationship with a gifted neurologist who will take the time to listen to you.
This sounds like a great idea but how on earth do you do this if you are not on private medicine?
Listen to Movers and Shakers recent episode it seems that in the UK there is a shortage of neurologists because it is such a hard medicine to study!!
Find a good talk therapist.
Again money money - virtually impossible to get on NHS
As in most areas of life there will be huge gulf between the experience of relatively privileged PWP's like us and those with lower income lower social capital...no surprises there but a dismal thought.
Hello Nick,
Frustration tinged with a little resignation or vice versa? Yes . . . but I tend to understate how I feel.
I also tend to forget that we have very different healthcare systems. I cannot speak to yours but in the US, the insurance bureaucracy barrier between doctor and patient becomes unfathomable on certain treatment issues, so even if you are fortunate enough to find a gifted movement disorder specialist, just make sure that she is gifted in insurance negotiations.
The "cure within 10 years" comment does sound a little blunt, but I heard it from two different doctors about two different diseases: Hemophilia and Parkinson's. That was almost 20 years ago. I will grant that researchers are close to a genetic fix for Hemophilia.
You are absolutely right about research money making the difference and Hemophilia is the perfect example. People with Hemophilia benefitted greatly from the HIV/AIDS research at the turn of the century. My son infuses himself twice weekly with synthetic clotting factor born from that research and he does well.
I am thankful for Michael J. Fox and the $1billion that he has raised for PD, but that amount is a drop in the bucket compared to the $3billion per year that the US government spends on HIV research. Compare that to the $270million per year spent on PD research.
Not that I am suggesting taking funding from any other medical research funding to go toward PD but consider this: the diagnosis method for Parkinson's has not changed in a hundred years (I exaggerate). But really!
I had to laugh (and cry a bit) at your comment about feeling fortunate to have been diagnosed at 75 . . . You are never the right age to get a Parkinson's diagnosis.
Hi Tommy - I’m touched that you cried at my ‘fortunate to be diagnosed at 75’ - I was tired when I wrote and am struggling with a new keyboard.* which means I make even more typos than usual - and had not too much bandwidth left for clarity of expression. But you will know what I meant. Compared to what you and MJF** and all the other have to deal with I do feel fortunate.
* i decided to get a laptop stand a separate keyboard so my posture would be better- hadn’t reckoned with the challenge that the slight difference in layout would pose. Ah well.
“
** I watched a couple of recent interviews with MJF and found them cheering seems inappropriate so I better say inspirational- in that to see how much more challenged he is and his ability to face the hell of it and still turn a joke.