Some need more help now...

[1shakennotstirred]

To whom this may concern:

I am writing this letter to send to the Parkinson’s Disease Foundations and other groups. Frankly, I am upset with all the Parkinson’s cruises and parties and other “fun” activities that are advertised. Granted, Parkinson’s foundations need fund raisers to raise cash to keep the research going for a cure. I have found NOBODY says anything about the Parkinson’s Disease sufferer that wonders where they can scrape enough money together to get their next dose of meds even with insurance. I am one of those people.

I will never be able to afford the cruise or go to one of the conventions. That’s OK. I am sure there are lots of PD suffers in the same boat.(no pun intended) So why does the internet and other media give us a break and start helping those who really need the help. Mr Fox and other organizations have lovely web sites and are strongly pursuing a cure through stem cell research and other means. I am happy for them and their missions. But, how about helping those of us who aren’t financially secure and have a hard time paying for a $3 prescription at the local Wal-Mart Pharmacy

. My story is simple. Due to tremors and sever joint pain, I cannot hold down a job. I am on my third appeal for SSI (which by the way, the third appeal has a 16 month backlog in the courts) and I have not had any substantial income since May of 2009. I am getting some help from the state of Minnesota with food and earn a meager 150 a month paycheck and free rent for caretaking an apartment building and yes, that person at the Wal-Mart Pharmacy is me! I consider myself lucky for what I have. There has to be lots out there a lot poorer off than me.

So please put yourselves in our shoes. It’s time to help today’s PD suffer. To Mr Fox and all the other organizations, how about rallying at Social Security to help those of us who need support now and still work for a cure of PD. I challenge anyone to live a month in my shoes.

[Hidden]

You will have to get lawyer to get your benefits

[Hidden in reply to Hidden]

I agree. The laws are written in such a way that it takes an attorney to go thru the maze.

They have been thru "the maze" so many times they know how to work the answer to the questions to get the best results.

[parkey]

i feel the same way i think MJF should do more for people with parkinsons it wood be nice if he wood make people awhere of how to get help with ssdi how to get help paying for meds i love the guy but i think he is out of touch of how hard it is for people who have parkinsons he does not have the problems alot of us have he need to go and see for himself how alot of us are doing and put a face on parkinsons that is not rich

[NanCyclist]

You many not be aware of this, but depending on your situation, many PD drugs can be obtained for free or very low cost from drug companies or a couple of charities if the recipient is below certain income levels (depending on the program). The key web site is needymeds.com which has hundreds of links to charity programs for just about any prescription drug you can imagine.

Programs like MJFF give hope to those of us who saw generations suffering from this disease with no expectation that there would be any cure in their lifetime. MJFF research, and others like them, have put a lantern at the end of that tunnel so that we may reasonably expect progress toward a cure. Each organization carves out its niche and does the best possible with their resources to achieve their goals. I try to do the same in my life. I can cycle and reduce my symptoms so I share that information and make cycling available as broadly as I can. It won't help everyone, but it has the potential to help thousands.

[Jupeter]

You have my sympathy. Here in the UK, anyone over 60 gets meds free and even below 60 there is only a standard nominal charge per prescription.

I don't understand the objection to a similar scheme in the USA. When I see people interviewed who say openly that they don't want to pay (tax) for someone else's health treatment, it makes me so mad. Yet, some of those same people could be struck down with PD or MS or some such and find that all their money is swallowed up by the healthcare costs.

Meanwhile, healthcare companies and health insurance companies are raking in a fortune.

Can't understand why Obama's proposals had to be so watered down.

I am so glad we have the NHS, with all its faults.

[Hidden]

I had to go to several doctors before I found one who realized that most of my symptoms were side effects of my medication. I had no life while taking those meds.

I now can function (very slowly, pacing myself) and feel like a part of my family.

If I had not been able to be in charge of my medical care and told what doctor I had to go to, unable to change, I would continue to have no life.

[Therese]

I am one of those people too. I did get my SSI 2 months after I applied for it because of my back and hip issues. I'm permanently disabled. I was one of the lucky ones who didn't have to fight the system for it. In that I've been put on medicare and medicaid because my income is so low. Disability pays me only $700./month - out of that I pay $530 for rent while I wait on lists for low income housing. After car insurance, there is very little left. I get SNAP benefits which is immensely helpful but I'm 58 and can't afford any kind of life insurance to take care of final expences and my kids aren't rich either and I don't want to leave this as a burden for them. It's the simple and important things that matter that are out of reach. So though I'm in a better situation than you are right now, there is much I go without because I just have no money left. Why isn't there a fund for the needy PD sufferers to apply for? Research for a cure is very necessary, but there are many of us who don't make the big bucks that can't afford even the basic necessities like personal care items, basic health care that isn't compromised just because we have medicare and/or state health care insurance. I agree with you and I hope you get your SSI benefits soon and health care insurance along with it.

[parkey]

i feel the same way therese more people need to no how hard this can be