MONEY

[czimmerman]

I am wondering how most of you with PD, and are unable to work,

actually live finanicaly. I am living on SSI which iS, after Medicare, about

800 a month. My rent is 500 a month. How do you do it?

[Donzim]

That must be so hard and I truly don’t know how you do it. I know that in the past, people with really expensive diseases had to impoverish themselves financially and become eligible for Medicaid. That is what my sister had to do to move into assisted living and she didn’t have PD. She had to rid herself of all her assets and give what she had to her children and then she was eligible for Medicaid which allowed her to live in assisted living. (Medicare doesn’t pay for nursing homes except right out if the hospital for recuperation.) don’t know what that did with her SSI.

Medicaid varies from state to state. I suggest you get a case worker from Social Services who will tell you what you can and cannot do.

[1182 in reply to Donzim]

I should have planned better. But I didn't get a diagnosis until after I retired. Who knew! ?

[Flyingcarousel2 in reply to 1182]

You might consider getting in touch with your “independent living community” also. They can help with so many areas. It is not for developmentally disabled only-which my adult son is but they help with housing, housekeeping assistance- so many areas typically. I’m sure it is called differently in each state of USA. Prayers

[m-h1 in reply to Donzim]

Wow Sorry about this situation you find yourself in.

I understand you are in the USA?

It frightens me to hear the financial horror stories from across the pond.

Here in little old England we PD sufferers are well looked after.

I must add.

I've worked fifty years and paid into the National Insurance system.

Good old NHS

National Health Service.

All treatment and medications are free.

Mobility cars are provided including insurance, servicing .tyres etc

All I have to do is put fuel in.

I am unable to drive so my wife drives for me.

I a bad passenger. Ha ha .

Public bus transport is free to OAP.s

I have a disabled sticker that allows me to park anywhere. ,within reason. Free of charge and nearest to amenities.

No ..I'm not bragging or boasting.

I've worked all my life self employed,and paid into the system.

However I would give all these benefits up to be back where I was before they let me have this debilitating Parkinson's disease.

Oh ...to get up at 5 am and go to work.

Come home at night nackered, eat my dinner, see the kids and have a beer or two.

Then start all over again tomorrow.

Now I sleep 18 hours day, have trouble even dressing, handling the tv remote.

Don't like to be in public because of my tremors.

At least I can still moan on this site.

Some body in the pub the other day, saw me shaking and asked ." Do you want an ambulance?"

"No." I waveringly said. "I'd rather have a Ferrari"

Money means nothing if you ain't got your health.

Keep smiling. m-h 1

[missybee in reply to m-h1]

I envy the Europeans .. this country’s healthcare is a disgrace

[m-h1 in reply to missybee]

Sorry .I didn't mean to rub it in.

There is a down side as well. Because the NH S. Is free to anyone. It is widely abused .

People turn up at Accident and Emergency with an headache or a grazed knee.

This blocks the system.

Wonder how many would turn up if they'd to pay. Say £10 or £20 a time for a consultation .

People turn up for health tribunals with a walking stick limping ,

On the way out they limp on the other foot.

Ah well that's human nature.

m-h1

[ddmagee1 in reply to m-h1]

I enjoyed reading your reply, m-h1! I like your sense of humor. It’s really sad in the USA, where I live. The leaders in the government that we have now, are saying that all the monies we’ve had deducted from our pays each time over the years, that were supposed to go into Medicare and Social Security benefits are “taxes” on us and”entitlements” ! Therefore, they are passing laws defunding some of the money that has been put into these programs, and cutting benefits, and plan to do so as long as they can get away with it. Like you, I worked over 50 years, and put money, each payday, involuntarily, into these programs. I, also, have PD, and some funding is going to be cut with disability programs. To show you how bad it’s gotten, some patients with Parkinson’s and other neutro-degenerative diseases, recently gave a peaceful demonstration at the Capitol in Washington, D.C. At stake, was the recently passed tax bill, which benefited the wealthiest American citizens most, with add ons to the bill cutting Medicare/Medicaid benefits for those suffering from disabilities, like PD, A.L.S. MD and others. One young man, in a wheelchair, spoke up forcefully about the monetary cuts. He was not violent in any way, but he was understandably upset. Unfortunately, this young man has young onset motor neuron disease (A.L.S. / neutro-degeneration/ Lou Gehrig’s disease ). His prognosis is very poor, and he has a young family. This man was arrested and treated very poorly, when he was just peacefully protesting. It seems like our current government could care less about the needs of those of us, who are suffering from incurable, debilitating diseases. There’s not a day that goes by, that I don’t see homeless people in wheelchairs, trying to fend for themselves, with very little help, in the small city where I live. The health care programs for government employees provide excellent benefits, and they don’t ever have to worry about threats that their benefits will be cut off. Yes, it’s a sad state of affairs in the USA, and it’s only getting worse, not better.

[JAS9 in reply to ddmagee1]

Vote in 2 1/2 weeks!!

[marilw]

So sorry about your financial situation. Doesn’t Medicare pay for your meds and doctors? It pays for mine. You might look into SSI disability . For Medicaid I believe you must have devoid your finances two years prior to applying.

Sounds as if you do not get a pension. Your in a tough money situation even without PD.

[AndysGirl in reply to marilw]

I dod not devoid any income or property

[Bailey_Texas]

Were you ever married if you were you may be entitled to a share of your husband's SS. If you are it does not reduce his SS .

My wife gets $47 a month from my SS and we are still together.

Hope this helps.

My wife and i were lucky. We were broke 1986 and started saving for our retirement putting back what ever we could and with interest we were able to amass enough for retirement. Along with SS we live well.

[Dylpup]

Have you tried applying for SSDI (Social Security Disability Income)? A primary qualification is that you have worked a certain number of quarters and paid SS taxes. You can own assets and have savings and still get this. However, if you're disabled and under retirement age, you may have to wait 2 years before being eligible for Medicare.

Sometimes SSDI puts you over the income limit for SSI (Supplemental Security Income--which is based on income and assets and varies from state to state. Often if you qualify for SSI you also qualify for Medicaid).

If you only qualify for SSDI and are under the retirement age, you have to wait 2 years before being eligible for Medicare regardless of your age. Some states have special assistance programs for this situation. In my state, Medicaid is much more readily available to single mothers with children. Adults with disabilities are often left out of the picture.

Talk to Social Security, your state's SSI program, a knowledgeable social worker, anyone who knows these systems. I believe all states have programs that are clearing houses for information to the aging and disabled populations.

Educate yourself about these programs and what's available. I'm not an expert., but have had a few friends navigate these systems.

I don't see this changing for the better especially since the mandate to have insurance has been removed. Everyone has to pay in so there's enough money to pay for people who have problems like PD. The gentleman from Great Britain's comments are a good example of a system where everyone pays. But it's also single payer, which the US is no where near. No system is perfect.

[missybee]

I should add to my previous comment.. God bless the VA .. they help my husband

[jdc3]

I lost my job and health insurance during the "Great Recession" in 2008. I moved to Thailand to live with my (now) wife, and get my expenses down. I was 55, and in good health (I thought) and I had a little money saved. Then, a bunch of expensive things started happening: very expensive dental work, double hernia, skin problems, osteoporosis, & Parkinson's!

Thankfully medical & dental care here is MUCH cheaper than the US, but it still quickly burnt through mt modest nest-egg. When my son became unemployed, I spent what was left on him. Now I'm broke.

Still I'm lucky. I'm a computer programmer so I'm able to earn some money, but my only paying client knows I have Parkinson's - and I probably can't get hired anywhere else (I still do great work, but I don't look like I do, so I don't even try to find new work) so I'm working for a fraction of what I'd be earning if I didn't have PD, but it pays the bills.

I'm also lucky my girlfriend didn't leave me (in fact she married me!) She's really an Angel - I don't know how PWPs do it on their own.

One complaint I do have is that I've paid into Medicare all of my life, but it doesn't cover people outside of the US. I think they should encourage people to get medical care out of the US - they'd save a fortune!

[JAS9 in reply to jdc3]

I was also a programmer. I worked for a few years even after my dx in 2011, but then could no longer pass an in-person interview. After that I was able to find some remote work on a site called upwork.com. You bid for jobs, build a reputation, etc. It''s really quite sophisticated and well done. I can no longer even do this remote type of work, but my wife finds editing and proof--reading jobs there.