Stand Aid: Stand Aid Can anyone tell me if... - PSP Association

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Stand Aid

Karynleitner profile image
17 Replies

Stand Aid

Can anyone tell me if a Stand Aid can be used to move my husband from room to room. He is unable to walk alone and I am having a hard time holding him up. Also, I think I may need one that has a motor to lift him. He can weight bare, but is becoming more rigid especially on his one side . I fear buying something he will soon not use. If I cannot move him, what do I do.

If you have something in mind, please mention brand etc.

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Karynleitner profile image
Karynleitner
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17 Replies
easterncedar profile image
easterncedar

Can you use a wheelchair? I looked into the stand aid option, but the wheelchair stage beat me to it.

Karynleitner profile image
Karynleitner in reply to easterncedar

I understand . That’s exactly what’s happening here. We can use a wheelchair , but our present living requires him getting in and out of it. He is rigid and needs help to stand and often cannot balance on his own. I cannot get him up and into a chair alone. We use a stair chair to take him up and down the stairs. but must get him out of bed and then down a hallway. Even though our bed will sit him up, it’s difficult to sit him straight up and turn him to get out of bed . He leans back and when I pull him up , he can slide off. His one leg is also very rigid, even hard for me to lift. It would even be helpful if it got him out of bed safely. I am looking for a home where we would have fewer obstacles, but there is not much available. . However getting him in and out of bed will still be a challenge .

He has a recliner that raises him too, but then he still needs help us and then ideally someone immediately behind him. It’s tough when we are alone.

easterncedar profile image
easterncedar

Great photo, btw!

Karynleitner profile image
Karynleitner in reply to easterncedar

Thanks. Our sons birthday last week. We told him to smile really big.

Katiebow profile image
Katiebow

Ben uses a stand aid to move him from riser recliner or bed to the shower chair or wheelchair. I wouldn't be able to use it to get him around the house as the flooring and door thresholds wouldn't allow it. I do however find it a vital piece of equipment as I use the strap to pull him up and secure him tightly to the standard whilst I transfer him without hurting myself in the process. If he your husband wants to be transferred to a chair in another room I would put him in wheelchair or shower heir using the standard, take him through and then use the standard again to transfer him into a comfy chair. We have a hoist at the ready for the time he can't weightbare, hope that helps.

Love kate xxx

Karynleitner profile image
Karynleitner in reply to Katiebow

Thanks. It is hard for me to roll him, that is why I am trying to avoid the hoist.

Do you just move the Stand Aid from room to room when it’s needed. Is yours a power lift, or does he pull himself us, or do you just help life him.? It sounds like at this time it would be very helpful to us.

Can you share the brand or model?

Katiebow profile image
Katiebow in reply to Karynleitner

I've looked on the internet and found the one we were issued, it is a Molift Raiser and is quite basic compared to some of the images on the net. It is a manual stand, from a high sitting position I guide his hand to the handle, put the strap around his back and he pulls himself to upright whist I gently pull on the strap to help and steady him. I then pull the strap to pull him close to the stand handle and secure it before releasing the break to move him. We have a hard wood floor which makes a huge difference to moving the standaid to help transfer him to chair/ bed or shower chair. When moving him to the showeroom he is wheeled in the shower chair and the standaid is then fetched to the wetroom to allow to wash and dry his bottom etc in a standing position. He then goes back onto the showerchair taken back to his recliner and the standaid used again to transfer from showerchair to recliner chair. I've got it down to a fine art now.ben isn't a gig heavy man so the manual aid is fine for him.

Love Kate.

Katiebow profile image
Katiebow

Ps your husband has a wonderful happy face. Xxx

Karynleitner profile image
Karynleitner in reply to Katiebow

Our son’s 30th birthday. Sadly, we don’t see his wonderful smile much anymore.

Yvonneandgeorge profile image
Yvonneandgeorge

Love picture, I agree with what Katie said we do the same xxxx

enjoysalud profile image
enjoysalud

What an absolutely gorgeous family. I love photos. It definitely puts a positive to the negative of PSP. Thank you!

CBP1 profile image
CBP1

I rented a sit-to-stand lift from a home medical supply company. At first, I was able to transfer him from the living room to the bedroom with this. As time passed and he became weaker, I would used it to transfer him from his lift chair to his wheelchair, then from his wheelchair to the bed once we got into the bedroom. When he was no longer able to bear weight, we rented a hoyer lift.

My husband is now in home-care hospice. They have been very helpful in supplying everything we need for his care. They pay for the rented hospital bed, the hoyer lift, all medications and supplies. The nurses are wonderful. Perhaps, you can see if your husband qualifies. I know it sounds depressing to be under hospice care but it has truly been a God-send. I believe that neurological diseases do not have to a strict 6 month life expectancy. My friend's husband, who had FTD, was in the program for 3 years before he passes away.

I read some of your past posts. Your husband's symptoms sound very similar to my husband's. I would be interested in hearing what the Mayo Clinic believes is the underlying disease process.

My husband plans to donate his brain to the Mayo Clinic's CurePSP brain bank. They will do an autopsy at that time and give us a definitive diagnosis at that time. At this time, his diagnosis is PSP.

I am sorry for your husband, you and your boys. These progressive neurological diseases are horrible. My sweet sister recently died of Huntington's disease. After seeing so many in my family suffer from these slow, cruel, humiliating diseases, I beg God for another way to go.

Karynleitner profile image
Karynleitner in reply to CBP1

Thanks So much. That is very helpful. Although Dan has fallen many times and had minor injuries , he has never been hospitalized . His movement specialist has a social worker call us, although she was very familiar with PSP, she had nothing to offer.

Can you tell me how long ago your husbands symptoms began.? Is he pretty much bedridden now.? Is he aware of everything and able to communicate ? I want to keep Dan at home, but I have a terrible time rolling him , so I worry how I will handle it if he needs a hoyer lift. He may just need to be moved in the morning at night and I could have someone help me. At least until I am more confident. He’s a big guy and getting stiff.

Thanks again👊

.

CBP1 profile image
CBP1 in reply to Karynleitner

Looking back, it's difficult to say exactly when his symptoms began. He retired in late July 2014 because he was having difficulty with balance and word-finding. At that time, he had some falls. We were fortunate to get through the falling stage without any serious injuries as well.

He is totally bedridden now. He cannot feed himself. He has a urinary catheter. He is very rigid and cannot move any of his extremities. He is aware of everything but he cannot speak very well at all. He knows what he wants to say but cannot get the words out. Sometimes he says "no" when he means "yes" and vice versa. It is very frustrating for him.

Do you have a hospital bed? Having a bed with rails helps when turning. Do you use a "turn sheet?" It is probably not realistic to think you will only need to turn him twice a day. Later on, you will need to worry about skin breakdown, incontinence, etc.

I would ask about what resources are available in your community. Maybe an OT consult would be helpful? We have been through the whole gamut of equipment and supplies that helped us pass through each phase.

Again, I'm so sorry you have to go through this. It's scary and heartbreaking. There is a fine balance between taking it a day at a time but also looking ahead to anticipate future needs.

I don't get on this site consistently. Feel free to email me at pettit.carolyn@gmail.com. I would be more than willing to try to help.

Tippyleaf profile image
Tippyleaf

What a lovely photo so good to create these memories.

Sorry no help with standaids others with experience will give great suggestions, but had to comment on lovely photo😊

Love Tippy

Sayer profile image
Sayer

If you are in England, ask you gp/district nurse who will visit then put you in touch with a (free) physiotherapist who will assess you husbands needs and arrang to supply necessary equipment through the NHS/NRS. I have a ReTurn 7500 which I use for moving my wife about the house. Physiotherapists don't like one doing this (health and safety). They have to go by the book but it works for us. If your husband can stand and support himself, with help, it works OK. If one does not ask, one does not get. Don't spend money (unless yiou have plenty) untill you have tried the above.

Good luck. If you think I can help further get n touch.

Karynleitner profile image
Karynleitner

Thanks. I am in the US. Our doctor and hospital bills are paid for through insurance and Medicare, but, I must pay all home health care and long term care . When we no longer have much money , the government will step up. Medicare will pay for some equipment . I know they will usually cover wheelchairs , hoyer lift etc. It is best both emotionally and financially to do everything we can to keep him home as long as possible.

I still cannot believe how our lives have deteriorated in a couple years. Thanks for your help. The kindness on this site is appreciated, thanks for taking the time to help

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