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#126386 - 08/25/07 06:31 PM
Needing some help, please
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Member
Registered: 09/15/05
Posts: 4434
Loc: Minneapolis Minnesota
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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
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#126388 - 08/25/07 08:22 PM
Re: Needing some help, please
[Re: Edelweiss]
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Member
Registered: 09/26/04
Posts: 3910
Loc: Alabama
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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
_________________________
chick ~ Here is the test to find whether your mission on Earth is finished: if you're alive, it isn't ~ ~ Prayer is the most we can do for another human being ~
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#126390 - 08/26/07 01:08 AM
Re: Needing some help, please
[Re: jawjaw]
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Member
Registered: 11/11/04
Posts: 3503
Loc: Colorado
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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...
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#126391 - 08/26/07 01:35 AM
Re: Needing some help, please
[Re: Princess Lenora]
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Member
Registered: 10/08/04
Posts: 1274
Loc: MD
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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.
Edited by Renee (08/26/07 01:57 AM)
_________________________
Courage is very important Like a muscle, it is strengthened by use .
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#126392 - 08/26/07 10:00 AM
Re: Needing some help, please
[Re: Sadie]
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Member
Registered: 11/28/02
Posts: 887
Loc: SW Florida
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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.comwww.shurepetsproducts.com
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#126393 - 08/26/07 02:11 PM
Re: Needing some help, please
[Re: lionspaaw]
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Member
Registered: 09/15/05
Posts: 4434
Loc: Minneapolis Minnesota
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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.
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#126395 - 10/21/07 02:49 PM
Re: Needing some help, please
[Re: Anno]
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Member
Registered: 09/15/05
Posts: 4434
Loc: Minneapolis Minnesota
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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.
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#126399 - 10/22/07 03:15 AM
Re: Needing some help, please
[Re: Anno]
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Registered: 01/21/07
Posts: 3675
Loc: British Columbia, Canada
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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.
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#126401 - 10/22/07 07:35 AM
Re: Needing some help, please
[Re: jawjaw]
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Member
Registered: 06/05/06
Posts: 4136
Loc: American living in Europe
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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
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#126402 - 10/22/07 11:22 AM
Re: Needing some help, please
[Re: Edelweiss]
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Member
Registered: 12/30/05
Posts: 3027
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Anno thinking of you both with love Mountain ash
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#126403 - 10/22/07 04:45 PM
Re: Needing some help, please
[Re: Mountain Ash]
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Queen of Shoes
Registered: 05/24/04
Posts: 6123
Loc: Arizona
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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.
_________________________
If it doesn't feel good, don't do it twice. www.eadv.netBoomer Queen of Shoes
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#126405 - 10/23/07 12:06 AM
Re: Needing some help, please
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Member
Registered: 11/18/05
Posts: 789
Loc: Aptos, California
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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.
_________________________
Casey Dawes Wise Woman Shining Supporting women business owners to step into their power as business leaders.
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#126412 - 11/23/07 04:53 PM
Re: Needing some help, please
[Re: meredithbead]
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Member
Registered: 09/15/05
Posts: 4434
Loc: Minneapolis Minnesota
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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.
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#126419 - 11/23/07 11:19 PM
Re: Needing some help, please
[Re: Anno]
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Registered: 11/24/06
Posts: 2930
Loc: Belfast/Northern Ireland
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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
_________________________
"Our attitude either gets in the way or creates a way," Sam Glenn
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#126420 - 11/24/07 01:10 AM
Re: Needing some help, please
[Re: celtic_flame]
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Registered: 04/16/07
Posts: 2411
Loc: Arizona
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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
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#126422 - 11/24/07 05:15 PM
Re: Needing some help, please
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Member
Registered: 12/30/05
Posts: 3027
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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
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#126423 - 11/24/07 05:38 PM
Re: Needing some help, please
[Re: Mountain Ash]
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Da Queen
Registered: 07/02/03
Posts: 12025
Loc: Alabama
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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.
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#126425 - 11/24/07 11:51 PM
Re: Needing some help, please
[Re: Anno]
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Registered: 11/24/06
Posts: 2930
Loc: Belfast/Northern Ireland
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D a sweethart hope it goes well and you get your just deserts, yes that is a joke lol
_________________________
"Our attitude either gets in the way or creates a way," Sam Glenn
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#126426 - 11/25/07 07:15 AM
Re: Needing some help, please
[Re: celtic_flame]
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Member
Registered: 01/16/07
Posts: 3404
Loc: USA
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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.
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#126427 - 11/25/07 04:13 PM
Re: Needing some help, please
[Re: gims]
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Member
Registered: 09/15/05
Posts: 4434
Loc: Minneapolis Minnesota
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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.
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#126429 - 11/26/07 06:23 PM
Re: Needing some help, please
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Queen of Shoes
Registered: 05/24/04
Posts: 6123
Loc: Arizona
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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.
_________________________
If it doesn't feel good, don't do it twice. www.eadv.netBoomer Queen of Shoes
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#126431 - 12/05/07 12:06 AM
Re: Needing some help, please
[Re: Anno]
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Registered: 11/24/06
Posts: 2930
Loc: Belfast/Northern Ireland
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any news about the disabilitie formes yet, or dose the processing take forwever??
_________________________
"Our attitude either gets in the way or creates a way," Sam Glenn
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#126434 - 12/07/07 02:08 PM
Re: Needing some help, please
[Re: Anno]
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Registered: 11/24/06
Posts: 2930
Loc: Belfast/Northern Ireland
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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.
_________________________
"Our attitude either gets in the way or creates a way," Sam Glenn
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