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By LOHENGR1N On 2011.04.16 23:59
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 jockdoc On 2011.04.17 07:49
You are so right! Barb's Death Certificate says cause of death "Aspiration Pneumonia." The next line reads due to (or as a consequence of Parkinson's).

Aso we heard," Cure in three years." We heard that repeated for 30 years.! Jock Doc I love Caregivers!

By caregivermary On 2011.04.17 11:01
Al,

I try to educate everyone I talk to that Parkinson's is more than a shaking disease. I have tried on this forum to help everyone understand the longer you have Parkinson's the more problems/side effects you will have. Problems caused by the duration of the disease, the meds, and age. Exercise, diet, and the right med regime will keep a person going for a long time. However, as most of us know, the Parkinson's person will experience the effects of aging at a greater degree and long term effects of the meds can be extremely detrimental.

I plan on fighting the death certificate issue with our Dr. and also plan to take on the research groups our area to continue to address this issue.

Please rant about this issue anytime.

By RhondaM On 2011.04.17 21:00
My dad passed away from aspiration pneumonia, too, but thank goodness the doctor put Parkinson's Disease on the death certificate, because that is what he died from. It is what caused the aspiration pneumonia, so it is THE cause!

By karolinakitty On 2011.04.19 17:42
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....
Ok..my 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 bookmarks...it 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 izrblue On 2011.04.24 12:36
Once again, I haven't been monitoring this wonderfully informative site as often as I should, but just read your post about PD being a killer disease. If this is so, why then do the neuros continue to tell my stricken brother when he asks "will I die from this"? "absolutely not"! "You'll die from something else first". Is this because he was first diagnosed at 66 and will die of old age first? He still thinks that the meds will make him better,and that his shaking will go away.

Are the doctors just being kind? Is it not advantageous to those newly diagnosed to have some hope?

Your post was an eye-opener for me, but you are suffering for 25 yrs now. Were you very young when diagnosed?

Sorry to vent here. Just very depressed and concerned about my brother's continued lack of education as to his side effects, etc. I agree. Doctors should be more forthcoming.

All my best ...

By LOHENGR1N On 2011.04.24 17:20
izrblue, I was 33 years old when diagnosed. When the Doctors say you'll die from something else first it is very misleading. Probably the main cause of death in Parkinson's Patients is phenomena. In time the disease causes problems with swallowing. These problems result in aspirating foods and liquids in our lungs causing the phenomena. Also balance problems arise and falls result causing injuries. So the Doctors are saying these problems can or will kill you not Parkinson's Disease. What We in the Parkinson's community want and need are Doctors to voice and record deaths of Parkinson's Patients as Phenomena resulting from Parkinson's disease or any other cause attributed to our underlying disease. In the article I referred to in the original post it cites causes of death due to Alzheimer's Disease as Lack of mobility, impaired clearing of secretions (such as mucous) and lack of appetite leading to poor nutrition. Also higher risk of infection. All of these are problems encountered with Parkinson's Disease too.

Your question concerning is it not advantageous for those newly diagnosed to have some hope? Many will say yes and at the surface this looks logical. However My point is there isn't any hope right now (or if there is any it is limited and scant), funding is tough to procure. Even tougher to procure for diseases that aren't labeled fatal. So in lying to patients, family and public We have nothing to gain and to Our harm we get overlooked or pushed down the lists for funding as diseases that kill you demand more urgent research. So to state PD isn't deadly is a lie that robs Us of future hope, hope that funding and research for a cure or even delaying the progression of this disease will be funded. So to tell us it isn't fatal has no advantage in the course of this disease nor will it help those who come after Us suffering with Parkinson's Disease. All We can ask for is a level playing field and that the truth be told from the start.

I'm sorry you are depressed and I know your concern but to give false hope and thereby limit or decrease our chances in my opinion is by far the greater wrong being done to Us. Take care, best of luck and hang in there.

By mylove On 2011.04.25 00:39
Just a clarification - Al's spellcheck is wonky on him tonight, and 'phenomena' should read 'pneumonia'.

By LOHENGR1N On 2011.04.25 01:27
lol, Ty ML, that Sinemet I dropped must have gone in my keyboard!!

By izrblue On 2011.04.25 20:27
TY for that correction. I couldn't imagine what you meant by 'phenomena'. I thought it was something supernatural. Gave me a much needed LOL. My heart goes out to you, but reading your posts sure gives me some hope that my brother will retain his once quite sharp mind. You are a wonderfully intelligent man and a ray of hope for all PD sufferers.

Stay well.


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