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Topic Come on YOPDer's we have to do something Go to previous topic Go to next topic Go to higher level

By LOHENGR1N On 2011.04.17 00:02
Ok Here I go again. To Our newer posters on the forum I'm always reminding and voicing that you do die from Parkinson's Disease! Some sites and organizations split hairs and stress you die from complications from the disease and PD in of itself isn't fatal. You can go back in forum posts to read this as I'm not going over it again here. (been going through a crappy time lately and have to conserve my typing to get what I want down here). I posted yesterday about an article from the Neurology Now magazine, in another article in the mag they talk about Alzheimer's Disease. In that article they say and I quote; "Alzheimer’s is the sixth-leading cause of death in the country and the only cause of death among the top 10 in the United States that cannot be prevented, cured or even slowed."

Now I've been pleading for years for the Parkinson's Disease sites to admit you die from Parkinson's Disease. What's the big deal? FUNDING! Funding for research and a cure! Parkinson's Disease is just as fatal as Alzheimer's Disease folks! BUT with the let's not scare people diagnosed with PD and say you die from complications brought forth by the disease....lets just dismiss it as a bothersome malady. No wonder We get stares, no wonder we hear it's just tremors right? I'm sorry I just had to get this out! Right on the web site Alzheimer's Association can state it's the only cause of death among the top ten in the United States that cannot be prevented, cured or even slowed down? We'd better get on the ball people and contact your organizations and associations you give to and demand they start telling it like it is. That goes for PAN too they want everyone to call their congressmen/women for funding? Let's all place a call to PAN and tell them if they want to be given serious funding then start calling a horse a horse or do their lobbying themselves. I don't know maybe it's the time of year but just finishing up my 25th full year of living with Parkinson's and entering year 26 I'm still saying the same thing and we're not much closer to anything like a cure or even a slowing of the disease. And I'll let you in on a fact we won't be until "our" organizations and lobbyists to change tactics and refuse to be viewed as a nonfatal disease. Thanks for putting up with another rant from me folks. Take care, best of luck and hang in there!

By karolinakitty On 2011.04.19 17:40
Agreed Al.... More people need to contact those powers that be to admit to this....

However, I think it was last issue they talked about Neuro's who belong to the group of "There is no pain with PD" THAT IS AN AWFUL DECEPTION" For a doctor to think that your muscles cramping up and twisting doesn't give you pain should be put in a body vise and have all the PD patients he has turn the knobs tighter and tighter.... rant.. now back to yours....

I myself have already talked to all three of our docs that whoever it is that writes his death certificate had better put Parkinson's as cause of death.
Putting this issue out there. telling your docs...writing all your reps/senators, Social Security, all PD related charities and research groups, Medical University's, the heads of all movement disorder clinic's, United Way, Senior affiliated organizations....
I think i covered them all.... I know we all have lives... but i've done this...I wrote ONE letter, and copy and paste my heart out....Once you get all the groups in your may take a total of half hour. It's a half hour, well spent. It may not help OUR PD family members, but it will help those down the line......
I'm with AL... Pen a letter and go to it......

By Elly On 2011.06.25 21:34
I have noticed this phenomenon too and I find it very curious. Katie Couric's dad died this week of Parkinson's and I was surprised that the headline actually stated so.

By BFB On 2018.10.16 09:48
this is all true! also:
Death certificates are read and counted by researchers and I mean researchers with an agenda.
not a good agenda either.

my mother smoked a couple times 50 years ago
her death certificate in the last few years listed smoking as contributing to her death.....

not the pneumonia vaccine that she got sick from a few weeks before her death.

Parkinson's Disease is the mute disease, and not because it makes voices softer...

it is because it is muted as a cause of death

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