Please sign this petition


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Please sign this petition

Postby grandmakcat » Wed Jan 13, 2016 12:36 pm

I posted this on my FB page after finding this petition online. Please sign this petition and share this information - the link is following my post.

My husband has been diagnosed with PSP which is considered an 'atypical Parkinsons disease'. Symptoms and characteristics of Progressive Supranuclear Palsy are similar with the major difference being the freezing of the eyes so you can't look up or down and less issues with limb tremors in most cases. Currently the VA allows compensation for those who have Parkinson's who were in Vietnam and exposed to Agent Orange. PSP is a rare progressive neurological disease that affects 1 in 1 million people - and this disease while related to Parkinson's is NOT considered by the VA for compensation. While there are those who were not in Vietnam who have this disease - there are quite a few Vietnam Veterans who do and may not know that Agent Orange may have been one of the contributing factors to why they have this disease. Because of the debilitating and fast progression of this disease of which there is no cure, I believe any Veteran with PSP or any other 'atypical Parkinson's disease' should be able to apply for compensation not just to receive money - but to provide the needed services for their care that is required, especially in the end stages. Many of these men and women who served in Vietnam have been neglected and now as they age require specific medical care for disabilities such as PSP. Please sign this petition and share it to get the word out. This isn't just about my husband - but for all Vietnam Vets who need to be heard. Thank you for your time. - Veronica Pressley (Please go to CurePSP.org or Cure PSP on Facebook for more information.)

NOTICE FROM MODERATOR: The petition project has been closed by its website operator. However, we are keeping the member's posted topic in place because others may find useful some of the information posted in Replies. -- Moderator
Husband Dennis 1952-2016 aged 64 - PSP diagnosis 2014 - first symptoms around 2009 / Vietnam vet / Cause of death - complications from PSP; aspiration pneumonia 7/9/2016
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Re: Please sign this petition

Postby zymurgy » Wed Jan 20, 2016 12:30 pm

I went to the petition and saw the message that the petition is closed. Any suggestions as to how to re-open?
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Re: Please sign this petition

Postby eplowman » Wed Jan 20, 2016 6:13 pm

Pretty much a dead cause. Including for observations G. made: no established connection between Agent Orange in Vietnam and the onset of PSP among some people decades later. Most people with PSP never served in Vietnam. And meanwhile, research is tending to point to genetic mutations and away from environmental factors as causative.

There are MANY online crowd-source-like campaigns to raise money for sick and needy vets and other people groups. This was another one -- a bit dated now (after two or three years online) that generated too little interest (and had too little credibility) to be taken seriously (and was shut down). It doesn't mean that the need among individuals is any less. It just means something most of us already know: "free-money" handouts are harder to come by.

ed p.
|My wife of 56 years was Rose b. 1930, dx 1999, symptoms from 1997; d. 06/21/08; PSP-rs autopsy confirmed.
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Re: Please sign this petition

Postby grandmakcat » Fri Jan 22, 2016 11:07 pm

Thank you for your input Ed and for the information about the research. My purpose for signing the petition and for exploring this isn't because I am looking for 'free money' as you put it, however wonderful that would be. If there is even the slightest possibility that Agent Orange is a contributing factor to PSP, and because PSP mimics or is considered 'atypical parkinsonionism' and Parkinson's is rated for service connection - if there is a way that any Vietnam Veteran who served and has this disease can be included along with Parkinson's they would be able to receive more help in the treatment of this disease. My husband has been out of work since 2013 and I had to quit my full time job in 2014 to care for him full time. I am not old enough to apply for social security and we are living on my husband's pension and disability. We are better off than most but just make ends meet. I do not even have my own health insurance because I cannot afford it. As time goes on, the help we are going to need for my husband's care will increase as will expenses. I am not one looking for a handout - just to be able to provide the best possible compassionate care for him regardless of being a veteran or not. I admit I am scared. I see no harm in looking for answers. This is all new to us as I am sure it is to others and if asking is a dead end then so be it.
Ronnie
Husband Dennis 1952-2016 aged 64 - PSP diagnosis 2014 - first symptoms around 2009 / Vietnam vet / Cause of death - complications from PSP; aspiration pneumonia 7/9/2016
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Re: Please sign this petition

Postby HelpingDad » Thu Jan 28, 2016 10:45 am

Hi.
I am new to the forum, found it after searching for info on psp. My father, a Vietnam vet never in country, was recently diagnosed with PSP. One of the benefits that may help monetarily is called Aid and Attendence. It's based off income vs. expenditures that can pay the vet or spouse of the vet up to $1769/mo. There is a pretty lenghty form that needs to be completed and doctor has a few pages to complete.

My father uses the VA medical system exclusively and it can be slow but if you stick with it and follow up, they can be a great help.

Ron, retired full time caregiver for dad.
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Re: Please sign this petition

Postby grandmakcat » Thu Jan 28, 2016 10:25 pm

Thank you HelpingDad (Ron) for the information. The VA has actually been very helpful during this process and we are also using them exclusively for all of his care since we do not have outside insurance. I'm sorry your dad is dealing with this but welcome to the forum.
Ronnie
Husband Dennis 1952-2016 aged 64 - PSP diagnosis 2014 - first symptoms around 2009 / Vietnam vet / Cause of death - complications from PSP; aspiration pneumonia 7/9/2016
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Re: Please sign this petition

Postby lakegirl51 » Wed Dec 14, 2016 8:30 pm

Has there been any advocacy by psp groups or other neuro groups to advocate for inclusion of psp into VA benefit categories. I understand that Parkinson's has been tied to agent orange by VA and that ALS is eligible for broader benefits although not necessarily tied to Agent Orange. I think the latter with ALS was the result of strong advocacy by the ALS association demonstrating numbers of non veteran and veterans with ALS. Is there even a registry that compiles info including a history of military service to gather statistics on the numbers? CDC? If so, not sure how but with the small number it seems to be a feasible study. (Note: my husband who has psp is a Vietnam era Navy veteran and currently not accessing any VA benefits although in looking ahead have tried to research options for future services.)
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