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.

Anno,
I'm sorry as well and I will keep you in my thoughts always.
dancer

A big thank you to you both. I will keep you updated.

I woke up crying the other morning. I love this man. He makes me laugh. A person who can make me laugh has a lot of importance in my life. Anyway, I woke up crying because I know that I will lose him way too early in our lives together. He hugged me and sang to me a morning song that made me laugh once again.

I hope that he will always recognize the care that you give him. How is he psychologically coping with all this?

He sounds like a great guy for you.

Keep us posted, Anno.

Oh honey, my heart is so heavy for you both. You are such an amazing woman and while he is so fortunate to have you, I have to add that you must share in that fortune as well. The way you have always describe this man in here to us all, the high praise you've placed on him, and all the loving words you've used to describe him or his actions to us, let's me know that he is so very special, and one of a kind.

As everyone else has already said, I will be holding both of you so very close to my heart and in my prayers!

Hallo Ann Chara,

My heart is filled with admiration and awe how you two are coping through your love for one another.
I’m so glad you have come back to us ( the forum), Ann. You know so many of us are here to share this trial with you. That’s me on the floor…just giving you as much support as I can.
You better believe that I will do everything to come to London next year to meet you and Dennis; the light in your life.




God bless you both.
Hannelore

Anno
thinking of you both with love
Mountain ash

Annie, I cry both for and with the two of you. I'm in the same town so call me if there is anything that I can do for you, okay? Sending positive thoughts and prayers your way.

I am so sorry to hear all that you've been going thorugh. I know the love you have for him by the wonderful way you write about him in your posts.

Is he capable of being alone now that he is no longer working? I hope so, but if not, there are excellent adult day care centers where he can go to be around others.

Sending prayers and blessings to surround you.

Anno, so sorry to hear all that you are going through. Are you getting support for yourself? Studies are showing that people (usually women) are reluctant to get help until they collapse. We can't do it alone.

You are in my prayers.

I am just so sorry for all you are faced with Anno and your partner. You might tery finding someone who can be his caregiver when you aren't there. I found some really good private people willing to spell me when my sister was here, and suffering from MS and full blown dementa...Bless you both.

Thanks, Ladies, one and all.

I will keep you updated, and I am taking care of myself as well as Dennis. We are going to begin couples counceling with a counselor that specializes in disabilities. We have great neighbors and great friends that have helped out when we need.

I know how wonderful it is to be here in the forums to give and receive support. I have missed being around here, but hopefully I am back again for a while.

Anno,
I'm lucky to have joined when you came back then! I like your posts very much!
dancer

Anno, I will keep both of you in my prayers.

Thank you Yonuh and dancer. I appreciate all the kind thoughts. I truly do.

Anno, you're both in my prayers as well.

An update

Yesterday, for Thanksgiving, My sweetie and I went out to eat with my parents (aren't I lucky they are both still alive) and my nephew and his girlfriend. I had decided I could not do it all (so yes, I am taking care of my own needs) and clean the house, cook and clean the house once again, so we made reservations at a steak house.

Dennis wanted to dress up, so he wore the beautiful suit he had made last year when we were in China. It took him 3 hours to get ready, and it was not because of vanity.

He tips over when he sits and therefore slides off of chairs quite easily. Four times during the meal I had to push him back onto his seat so he would not tumble out of his chair.

He could only eat half of his meal, not because of a lack of hunger, but because he expends so much energy simply trying to sit, lift his fork and chew.

It took us 20 minutes to get him out of his chair at the end of the meal. He works so hard at staying in the chair that his muscles all lock up. Then, I suppose his brain takes a while to tell his muscles to relax, too.

Today we will complete the application for disability. It has taken this long to get all the papers from doctors and pharmacies to complete the work.

He is taking all of this with such grace. He is patient with himself, even when I become impatient. He has humor about his pokiness, even when I attempt to rush him. I am learning more patience than I ever thought any human being could be capable of.

Thank you, ladies, for being here for me. It is so nice to be able to share my woes and celebrations. I am so lucky to have finally met this man that I love so dearly, and so lucky to have a man that loves me unconditionally, too. And each of you. Thank you, so very much, all my dear girlfriends.

Anno,I admire how you seem to be in such a good place with all you face! I'm happy to hear it and it gives me heart that people can face what they must and make the best of it!
dancer

Oh Ann, thank you for letting us all know how you are doing. Like Dancer, I admire how you are making the best of your rapidly changing situation. I do believe it's only possible for you to carry on as strong as you are, because of the deep love you and Dennis have for each other. How wonderful that Dennis is taking his illness with grace and hasn’t lost his sense of humour.
Hopefully you will finally get more support after the disability application.
God bless him and you Ann.
Hannelore

Anno, a friend once told me that the beauty and strength of a person's character is defined by the manner with which he faces adversity. You and Dennis suit that perfectly. Hope all goes well with the application.

Thank you Anne, The hardest part is the rapid change - just when we figure out how to cope with one thing, something else occurs. Like you said, the decline; it's difficult for both of us watching Dennis loosing the ability to be a doer.

Dancer, you have inspired me through your posts. Your tenacity is something I admire.

Hannelore, my long lost sister. Your words are always a comfort to me. I agree, our deep love makes it possible. I remember you telling me that some of your aquaintances have divorced over illnesses; I can't imagine leaving Dennis because of this. I just love him too much.

Oh, Lola, you and I must have been posting at the same time. Thank you for your kind words. If I would ask for prayers for anything, I would ask you all to pray that this application process is much easier than it has been for others I have heard about.

I know we chatted bout this privatlie, i reallie din't know you had posted about it this way , you may have wondered why i was asking questions that are answered heer, i promise i wasen't being a pest.

i just read this postall the way through, sorrie so much been going on for you, both of you. It is bad enough when one has to work out the practicalities of disabilities, the emotions (for you and D) then theirs the financial stuff all valid all worriesom. The financial stuff is hard work getting the papers in order by the sounds of it and the worrie of that alone makes living a day much harder.

You have a lot to fight for but i know your up for the fight. I reallie do hope your applicasion go's through first time, then thats something done, dusted and out the way. I can certinlie "pray" that for you.

I hope the counslling is doing good in any way it can, even finding some peace and gentile thoughts in this difficult time. You reallie are a sweethart anno and i hope you get the best of all that can come your way.

Its was good to hear that the meal out may have been difficult but that it happend and it was succesfull, familie get toghers can be so important. I glade you had another oppertunitie for some good memories eventhough their may have been a bit of sadness their at the same time. Whishing you manie more oppeertunites for happie memories and good times.

Personalie, i reallie appriate your kind encouraging words to me, more so in the midst of your owen troubles.

lots of love and huggs, anno xx

Anno,
I finally had a chance to read this whole thread. I wanted to tell you how much I admire you. I admire you and your husband.

I had a time there when I brushed death where I needed just about everything done for me. I had broken my neck, you see, among other things.

My husband and I are still in our 40's and we found ourselvesw in offices with people well into their 60's at times. We saw a lot of couples and how they treated each other.

My primary doctor's specialty is Geriatrics! My body is that beat up from dance and injury.

Anyway, you are showing yourself to be so loving and so committed and I know there are couples I saw that treated one another like trash, showing no respect to one another when one was wheel chair bound, or had an illness like Parkinsons. We could not believe what we were seeing in some of the abuses we watched!

You are a stellor woman. I know what it takes to be a caretaker for a loved one first hand. I also have a sister in law with MS whose husband is very abusive.

Hooray for you. No one knows what they will do until they face something like you and he are facing. YOU are, again, wonderful and an example for so many people.

Thank you, it heartens me more than you know to hear about you and he and how you are handling this hard time.
dancer

Anno, whether you know it or not, you are setting such a fine example for the rest of us because we do not know what is to come. Should any type of caregiving come into our lives, I'm sure we will all remember your love and strength for Dennis.

I've already begun praying for this disability paper work and outcome. May the case workers who read your application see the truth and beauty that lies behind it and grant you whatever you need to continue on this loving path of caregiving!

Three cheers for Anno and Dennis, who sounds delightful.

Anno
without going into detail know that I too am a caregiver and feel that this is willingly my role.I do believe we are not goven more than we can cope with.In return for my caring I am given love...the hugs I give and get back allow us to understand love endures.
I feel heartbroken for anyone who is coping alone without a loving caregiver...
Sending blessings your way.
Mountain ash

Your words stir memories for me and they are bittersweet. You have no idea how much I admire you for your devotion to Dennis. Somehow I know that if the tables were turned, Dennis would be giving you the same care.

Please know that although this isn't your intention, you are not only setting an example for the women on this board who may not have faced the "caregiving" challenges, but you are showing the "lurkers" and anyone stopping by here to read, that love can guide you through it all and sustain you. That doesn't mean its easy, not by any stretch of the imagination, but it IS what drives you.

And believe it or not people, the caregiving has its rewards. There were days that Daddy was seemed so "there" and I thought he was aware of what was going on; but of course he didn't. But he would say something like, "You know doll, I just don't know what I'd do without you, your Mamma, and the sisters. Do you know how much I love you all?"

Anne, please also know that each of us are praying for the paperwork to go through without a hitch and that you get the help you so very richly deserve.

Ladies, you are all so kind and generous.

And I know that many of you are caregivers and you cannot believe how much it helps knowing I am not alone. Like Mountain, if you are in a caregiving role, I hope that each of you can find the joy in that role and see yourself as more than just a caregiver.

Anyhoo - almost done with the application. 2 months worth of gathering paperwork, 2 hours of reviewing the application on Thanksgiving, 4 hours of input on Friday, 3 hours of input today, and tommorow we will tackle the last section. And we haven't even had one cross word!

Tonight Dennis is taking me out to eat at one of my favorite Italian resturants to "pay" me for all of my research and word processing time. Yum Yum!

D a sweethart hope it goes well and you get your just deserts, yes that is a joke lol

Add me to the prayer warriors.
I can only say WOW, and I'm so glad to have met you through this forum. You are an inspiration.

You gals have got me blushing.

Believe me, I am showing myself off in my best light here. I am feeling strong this particular week. Sometimes I just want to crawl into a fetal position and cry the day away.

Gimster, I love your new icon.

Thank you again, one and all. Each of you, in your own distinct way, help me to keep moving forward. YOU are each my own inspiration.

Anno, your feeling strong this week, when you have to do the paper work, is no coincidence.

Enjoy the dinner. Wish we could all join you.

Praying some more and sending warm, loving thoughts into your home - right smack there, with you and Dennis!

Annie, if you need to talk or get out, please call me. I'll be here until December 17th. Will do whatever I can to help you. My dad also has Parkinsons and he's declining now. Awful disease.

Thanks, Dianne. You are a good friend. I will miss you being nearby.

any news about the disabilitie formes yet, or dose the processing take forwever??

Anno, you started one of your posts with "Ladies you are all so kind and generous." We all can take a lesson from you dear lady, on being kind and generous, you are without a doubt the poster girl for each. Dennis is so fortunate to have picked you as his other half. Not many adhere to "for better, or for worse." God Bless you and I hope the Lord gives you both all you need to live a full life.

BRAVO to you Anno!!

Nothing new, Celtic. We are still waiting for the letter of support from his doctor. It seems all we do is wait.

Thanks, Chatty. But please keep in mind, that you only know me from my posts. I can also be cruel and selfish. Like all of us, we have our good moments and our bad moments. Please believe me when I say that it's a difficult struggle, each and every day, to remain kind and generous. Somedays I am successful, other days, not so much.

thanks for you honesty their anno, and i sure its a difficult struggle for most of us to be "all right" in this world but yet somedays we do just that.

sorrie for the waite its hell anno absolute hell waitings never my strong point, my mind fills with all sorts of worries and fears, thats also hell, if i let it over power me.One thing anno at lest you have the capabilities to be kind wise and generouse in the post, thats lovelie for us to read that need a bit of encouragment somedays.
i keep you in mind while you waite.