As some of you may know, my partner, Dennis, has parkinson's disease. He was diagnosed less than 3 years ago, but is on the fast track, progression wise. He is needing more and more care.

A few weeks ago, we bought him a new car that he can manuever better. It has large doors and a seat that is higher than standard. It also is small, so he can take corners better.

Today he went to the farmer's market and ran into a pole while trying to park the car,because he could not get his feet to the brake on time. We are afraid he shouldn't drive anymore.

A month ago, during one of his many falls, he fell backwards into a file cabinet and bruised his back and back muscles. He hasn't been able to work since or walk upright.

He can barely walk up and down steps, I help him get dressed, he is incontenent and he can't grip even his cane very well anymore.

I am wondering if anyone out there knows where and how we can get assistance. I can't afford to quit working and I can't be there to drive him all of the time. What about social security for disabled? Does anyone know? Any services that I can contact for helping him during the day?

Any suggestions, advice or anything would be great. Thanks. Ann

Dear Ann, I just want to say how my heart goes out to you. You have been carrying this burden stoically, and with incredible élan. You are quite a special lady; I just had to tell you that.

I wish I could give you good advice, but my knowledge is limited, since I don't live in the States anymore.

There just have to be social services to help families out in this situation. I'm sure you have asked your doctor. What about going to the town hall for information? What about social workers? Or contacting social security directly?

My best wishes and prayers will be accompanying you, and hopefully you'll find good help for you and Dennis very soon. Please let us know.

Here's sending you lots and lots of hugs and positive vibes. Lean your head on our shoulders. You are a much-loved dear friend here.
Hannelore

Anno, here is a link that may answer some of your questions.
Your husband is blessed to have you looking out for him.

http://www.socialsecurity.gov/dibplan/index.htm

Also, is he a veteran? If so, there are MANY benefits for Veterans who are disabled.

Anno, I wish I could help you. I do know that we have social security disability insurance, but it is not enough to live on. I just don't know. I'm so sorry it has come to this...

Anno,
The link to chick has provided for you will help . You partner can receive SSI benefits from the SS Admin , I know my husband worked on the program many years ago and helped set up the program for the Disabled . Thanks so much Chick for you wonderful help in the link .

All the best,
Renee


**Would be more and happy to help you
If you need anymore help please let me know and I will ask hubby what else we can do for you if yo need to do PM please feel free to do so.

Anno,
I work for a durable medical equipment company. We supply hospital beds, wheelchairs, that sort of thing. There is a special walker available for Parkinsons's patients. It's called a U Step. Here's the link to their web site www.ustep.com. It will be covered by Medicare with the proper documentation. If your doctor wants to give Dennis a walker - ask him about this one, as Medicare will give you a hard time about providing the UStep walker after providing him with a regular walker (that may not work for long for him).

When it comes to the point of needing more than the walker -there are special power wheelchairs that are able to be modified for his needs as the progression of the Parkinsons effects him. I do the billing for our medical equipment so if you need any specifics about how to go about getting the UStep or other equipment through Medicare - let me know.

Call your local hospital and ask them if they have a Parkinson's Group there. They will be able to direct you to all the resources to help you both out. You are going to need a great deal of support as this disease progresses so PLEASE seek out their help.

We deal with a lot of Parkinson's patients at work. My heart goes out to you and Dennis.


Carolyn
www.carolyn.shopshurepets.com
www.shurepetsproducts.com

Thank you all so very much.

Carolyn, we will check into that walker. Dennis is not covered by medicare, but if his doctor writes an order, perhaps his insurance will cover that walker. We were going to buy a cheap one, so it is great to know that there is one that is right just for Parkinsons.

He goes to the Struther's Clinic, and they specialize in Parkinsons. Unfortunately, the social worker there is not on his favorites list, and I don't think she will be much help to us. Fortunately, I work with social workers and they may be able to help us out with getting social security benefits and medicare.

Renee, as we go through the process of getting him into the social security program, I will take you up on your offer to pm you. You are so sweet to help me out. Thanks.

Lenora, thanks. Thanks, thanks, thanks.

JJ, he was a college student during the Vietnam war. So no veteran benefits. I am glad he was not on the front, but also wish he had those beautiful benefits.

Chick, thanks for the link. I did check it out and it looks as though he may qualify - he has many of the symptoms that are listed, but not every single one of them. That confuses me, however, as no one parkinson's patients symptoms are like anothers. We may have to work a bit to get there.

Hannelore, you are such a wonderful friend. I appreciate your very kind words and thoughts.

Thank you, one and all. I appreciate all of your thoughts, prayers, and kindness. You are the best women in the world, and I mean that with all sincerity.

Love you all. Ann

ps. Lola, thanks for the pm with the information. You are a gem and a wonder.

Oh, Lola, I mean wonder in the best of all senses. More like wonderful, really. Thanks again. Ann

An update

We are in the process of applying for social security disability, and the application is tough. I won't go into the details, but we have spent hours and hours just getting paper work together.

We found a new social worker at the clinic that Dennis clicks with and she has been very helpful. She told us that even if he does get the ss, tho, they still won't give him medicare for at least two years. This one I don't understand. If you can't work, how can you afford to pay for your own insurance? It does not make sense to me.

I went to the doctor with him last week and his diagnosis is worse than ever. She believes he has parkinson's plus total muscle atrophy I don't remember the name, but basically not only does he not produce dopamine in his brain, but the uptake cells are not working either. So no matter how much medication he takes, his brain does not know how to use it anymore. She said he has been progressing at a rate of 5 to 10 years for each year since his diagnosis. She wouldn't, of course, give a real number, but more or less told us to get our wills in order soon.

So we each made out living wills, we already have financial wills, which I will write about in another post. It was interesting.

He uses a walker all the time, uses two different transportation services to get around and has finally, officially, quit work. He is using cobra for insurance and thank the good Lord, we can afford it.

Thanks for listening, girlfriends. It has been a tough few months here.