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 relatively new member - 2 months 
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Joined: Sat May 15, 2010 12:09 pm
Posts: 14
Post relatively new member - 2 months
Thanks so much for this support group. I have no family here and I am the sole caregiver for my 73 year old husband. It sure helps to know that I am not the only one mentally and physically exhausted.
Does anyone have any suggestions for getting your LO into the car. It seems his brain is not processing how to get into the car. I am not physically strong enough to lift him in - he gets about half way in!! I purchased a very nice swivel seat thinking that might help - - no help, so I am returning.
I had been taking him for rides and also need to take him along for errands and now that seems almost impossible.

Prayers for all of you,
Linda


Sun Jul 25, 2010 4:43 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: relatively new member - 2 months
You might post your question in the Practical Caregiving Tips section as it may get more responses there.

The only things I can think of are related to a swivel seat. For example, you can put a large plastic bag on the seat, and use that to swivel him around but this requires effort on both parts.

Have you talked to the MD about getting an OT or PT for your husband? We got professional training for just such a problem -- getting in and out of the car.

So that you don't get burned out, have you considered hiring a sitter or getting a volunteer sitter so that you can run errands?


Sun Jul 25, 2010 5:07 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3377
Location: Vermont
Post Re: relatively new member - 2 months
Hi Linda - this is a tough one! Does your community have handicapped lift buses that you can schedule to pick him up in a wheelchair and take him places? You can then meet him wherever - drs. appts., shopping, etc. This is the only way other than ambulance that my dad can now be transported. Or, can you borrow a car from someone that might be an easier vehicle for him to get in, like one with higher seats or lower seats or leather (which is easier for them to slide their butts on than cloth).
Lynn

_________________
Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Sun Jul 25, 2010 5:09 pm
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Joined: Sat May 15, 2010 12:09 pm
Posts: 14
Post Re: relatively new member - 2 months
Thanks Robin and Lynn for your reply and suggestions. He has an appointment with neurologist in Sept., I will check into getting PT for him. We have two different style cars - both with leather seats. I thought perhaps a Suv would help - took him to dealer to check those out and the problem was the same.
I am checking into getting some respite care from Comfort Keepers twice a month, at least I can grocery shop, errands, etc. and who knows maybe have lunch with a friend!! I think we are going into 5 years even though he wasn't correctly diagnosed until Dec. 2009. 2 1/2 years ago after 7 doctors he was diagnosed with MSA. MSA and LBD have such similiar symptoms until the hallucinations started, thinking it was the sinimet, took him off and they have continued. Now we have delusions and on and on. You both know you are there.
Thanks for listening to me babble.
Linda


Mon Jul 26, 2010 12:15 am
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: relatively new member - 2 months
You might call the neurologist's office and get an RX for PT now. Typically, Medicare will pay for 6-8 weeks of PT and 6-8 weeks of OT, and then you have to get another RX.

Did you ever frequent any of the online MSA support groups until December 2009?

As you may know, a confirmed diagnosis is only possible upon post-mortem brain tissue analysis. Have you and your husband spoken about brain donation?


Mon Jul 26, 2010 1:34 am
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Joined: Sat May 15, 2010 12:09 pm
Posts: 14
Post Re: relatively new member - 2 months
Thanks Robin,
Yes, I checked the MSA site frequently. I am going to try to get him in the car again today using the plastic bag method - if no results I will then email his doctor for prescription for PT. I broke my hip 4 years ago and they came to the house a couple times a week for several weeks.
No, we have not discussed brain donation YET!
I have donated my body to our Research Science Center upon death.
You have a good day.

Linda


Mon Jul 26, 2010 1:28 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: relatively new member - 2 months
Linda, welcome to the forum! I too face the difficulty of getting my husband in and out of the car. I have yet to find a really good solution. Some days he does pretty well, although it does take time. Other days it's nearly impossible. I've had to ask perfect strangers for help getting him out of the car. You are right in that their brains are not sending the signal for the movements the situation requires. My husband keeps blaming his 'muscles' but his arms and legs are still very strong. They just aren't getting the signals from the brain and he 'forgets' how to stand, walk, etc. I sometimes tell him to tell his brain to lift his leg. It sometimes works. I can easily get him into the motorhome because there are steps to the side door and a handle by the door. But I can't very well take the motorhome to the doctor--no place to park it. I'm thinking of getting a van with a side door that he can step up into like a bus. And I think a van could be fitted with a w/c lift, too. He's unable to walk outside safely so I push him in a w/c. He walks indoors with his can, won't use the walker, and falls from time to time.

Medicare will pay for some PT if he has a new diagnosis or a new exacerbation of an existing illness. Don't expect much improvement, however, as so much of PT & OT is teaching and our LOs are not capable of retaining the instruction. You can supervise the exercises they teach, however. My husband had PT and OT for a while and didn't really improve so they couldn't recertify him. I got a PD exercise CD from someone on this forum and it's very good IF your husband is in the early stages of PD/LBD. My husband is unable to do very many of the exercises. It's still a very good program and he can pick and choose the ones he can do.

I have really gotten a lot of information and great support from this forum. Wish I'd found it sooner! Glad you're here, Linda! --Pat

_________________
Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Mon Jul 26, 2010 3:02 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: relatively new member - 2 months
To clarify, the PT or OT can train Linda how she can get her husband in and out of the car.


Mon Jul 26, 2010 3:45 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: relatively new member - 2 months
Yes, Robin! Absolutely! I'm sorry I missed the obvious. And also teach her how to protect her back when helping him in and out of bed, etc. And the OT can help with devices that will make his mobility easier around the house, too.

_________________
Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Mon Jul 26, 2010 4:12 pm
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Joined: Sat May 15, 2010 12:09 pm
Posts: 14
Post Re: relatively new member - 2 months
Hi Pat,
Thanks for your response to the difficulty with car. It seems we are all in the same boat, unfortunately! As I mentioned in an earlier post we checked into buying an SUV and he had the same problems. I was thinking the height might help. I am going to check with the neurologist about OT at least as you said Robin (and thank you) I can get some pointers to help me. I have osteoperosis and have lost another 10 lb. am now 87 lbs., at least she could possibly give me instructions as how to protect my bones more in the lifting process. He needs help in and out of chairs, bed, commode. I am using the riser with handles on the commode that I needed when I broke my hip and that does help some. Sure you already have if not I highly recommend.
Yes, this forum has been so good for me - - I feel so alone in this process and you have made me feel so welcome. Linda


Mon Jul 26, 2010 5:28 pm
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Joined: Sun Oct 21, 2007 4:18 pm
Posts: 835
Location: Acton, MA
Post Re: relatively new member - 2 months
Nana, We also have a problem with getting in and out of the vehicles. We also have a truck and we find that much easier. Getting him out I grap the bottom of his pant leg and get to the outside and then the other one, he gives me his hand and I just get him sitting upright and then I ask him to use the door to pull him self out, I brace the door with my body. Next to you, I'm probably considered a heavy wieght @ 92lbs. We had a company come to a Parkinson support group that said they could convert anything for the "physically challenged" :P all you need is money. Pat had mentioned the DVD, I have a few left, if you would like me to sent you one, just send me a pm with your name and address. I also want to welcome you, one club I would rather NOT have joined.
Take Care,
Gerry

_________________
Gerry 67, cared for Frank 71, married 49 yrs; dx 2004, passed away October 26, 2011.


Mon Jul 26, 2010 6:37 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: relatively new member - 2 months
Yep, Gerry! I said CD instead of DVD. Not thinking straight, I guess. :lol: And thanks again for it! That guy is a real inspiration, for sure!

I do the exact same thing with the car door when he's getting out. He uses the handle to hang onto while I hold the door tightly. But even so, there are times when he is suddenly and inexplicably unable to stand on his legs. I know it's not weakness and it's scary. When I get him out of bed, he has slipped into the floor several times because he is so stiff and leaning back and unable to stand up. I can't ever depend on it. Such an unpredictable and frustrating disease!

_________________
Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Mon Jul 26, 2010 7:17 pm
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