PSP- When to begin using a wheelchair? - PSP Association

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PSP- When to begin using a wheelchair?

Hdee
Hdee

My mum currently has a walker and is able to get herself up from sitting and can walk, although it’s worrying to watch as she is unsteady a lot of the time. She is struggling to sit down recently and will position herself over a chair and will flop down onto it with no control. In the last week she has had 3 falls, one off the toilet and one from standing where she has cut the back of her head. A couple of months ago she had a nasty fall and badly gashed her back and a month ago fell and gave herself a black eye. At what point do we think about a wheelchair? She is desperate to stay in her flat, she lives alone and currently myself and carers visit 4 times a day. But I am really worried she will seriously hit her head, I got her a falls pendant last week and it should detect a fall but it hasn’t alerted me to the falls this week! Any advice would be great. Thank you.

13 Replies
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I bought a wheelchair for my husband quite early on as he would fall walking unless he was hanging onto me and I was suffering and injured my back. He could then push the wheelchair with me guiding it but could sit in it when we needed to get anywhere in a hurry or was tired.

I retired from full time work 6 months after diagnosis as it was obvious it was unsafe to leave him alone. He was falling often, not always telling me until I saw the bruises. Is your mum safe being on her own? It’s good she wants her independence but falls will continue until she loses the ability to walk. She will have difficulty using a wheelchair indoors on her own as spacial awareness will be impaired. Have you planned on what will happen when she can no longer live alone as it’s good to have everything in place before the needs arise as changes can happen very suddenly causing huge problems. If so it may be better to put those plans into action in the near future. Falls detectors are good but they don’t stop the fall and as you said, serious injuries can occur. 24 hour care doesn’t necessarily eliminate falls, my husband spent 14 days in a care home when I hurt my back and he had 7 falls returning to me with stitches in his head, two black eyes and bruises

all over his body but I know he wasn’t left lying on the floor which could have happened if he was home alone.

It is a horrible situation for your mum, you and all those involved and I hope you soon find a solution which suits your mum and gives you a bit of comfort.

Best wishes

XxxX

A lift chair might help if she can operate the controls.

A portable adjustable commode over the toilet:

amazon.com/Medline-Portable...

Grab bars in the house. An occupational therapist would come into her apartment and help place them.

An alert button for her to wear around her neck if she falls when alone.

I echo everything NannaB says below, start looking for some full time care now for mum and your peace of mind ,the falls will get worse. When i had respite care for rog it was suggested to try live in care, it worked so well, cheaper and better than residential care. Not sure if you have a spare bedroom.

There are amazing techie things now to watch over vulnerable people ,but they won't stop her falling. Sorry not to be more helpful but this illness takes no prisoners and you need to keep yourself physically and mentally well.

My husband has problems getting up and sitting down. He uses the walker to move from his tv chair to the toilet and back, only a short distance. He has many falls, fell over getting his shoes this morning, there’s really no way to prevent them as his balance is so poor now. If we are going out, I use the wheelchair as his vision and balance are both so bad. He spends most of the day watching tv or listening to music so not moving around much anymore. I’ve just arranged some home help 2 days a week whilst I’m at work. Good luck, PSP is really a struggle for patient and carer.

Hi Hdee, I’m totally with NannaB here, your mum really won’t be safe left on her own as the disease progresses and falls will continue no matter what devices she has. Electric wheelchairs and motororised scooters aren’t really safe for them to operate themselves as spacial awareness is impaired. There comes a point in the disease when you can apply for Continuous Health Care and this would enable her to fund a fulltime live in carer if her flat can be adapted. Does she have involvement with all agencies to help with equipment, your GP or local Hospice can get the ball rolling on this. I found the hospice very supportive for many areas including help with getting the funding but the time has to be right for that. This is a difficult disease for those living alone and I’m so sorry your mum and yourself have to deal with the difficult decisions that will have to be made.

Sending love

Kate xx

Hi Hdee!!

Our experience:

It is very important to move as many muscles as possible daily. In this type of disease "what is not used is lost".

On the other hand, I would avoid forcing the use of the walker in complicated situations or with a certain risk and use the chair.

It is a matter of balance and it certainly complicates logistics. If we had applied this idea, we would have avoided, or at least delayed, the hip fracture accident, which meant a complicated period and a laborious recovery that, despite the efforts, did NOT allow us to recover the previous situation and we were to face a notably more difficult and precarious situation.

Hug and luck.

Luis

It would be good to have a wheelchair now for convenience for longer distances, but it’s important to maintain her walking and standing ability as long as possible. Using a wheelchair full time at this point might reduce rather than maintain her independence. Ideally she would have more hours of assistance/supervision.

My mother has been using a walker (U-Step) for 2 years but with continued serious falls and disease progression it became clear she needed to use the walker with assistance. So for the past 8 months she has used the walker with a caregiver or me at her side holding her and the walker. With full time 1:1 supervision (2/3 time carers, 1/3 me) her fall rate has gone from countless times to 1-2 times a month (usually with me) and no injuries. I realize not everyone can have this arrangement. She has at the same time had a wheelchair to use for travel outside of the house, for trips to the doctor, church, restaurants, etc. but always with someone pushing it. She could not propel herself. It’s a lightweight ‘transport chair’ with small wheels, that folds to fit in the car. We’ve been increasingly using the wheelchair inside the house now as her walking is ‘freezing’ and she just can’t move as well. So we are transitioning towards full time wheelchair. This stage is more difficult, and her ability to help with transfers by standing, stepping, balancing, is really helpful.

Ring cameras in living areas can help you keep an eye on your mother remotely but won’t prevent falls.

I agree with most of these comments. I have borrowed a wheelchair from the Red Cross to see how we get on.I only use It out of the house as the OT from the Hospice arranged for me to have lots of grab rails put in to help me keep my mobility around the house. I’m very wobbly.When my husband takes me out I try to push the chair then when I get tired or ache too much, l can have a ride . This way ,I still keep a bit of mobility. I,too, have had a number of falls,luckily no serious damage. Has she had physio as they will show her some exercises to help with balance etc though it’s hard to keep motivated to do the .

She sounds in a similar situation to myself. I ‘flop ‘down in the chair and have to be so slow whenever I turn around. Carers come in once a day at the moment as my husband is on furlough. Hope this helps if only to realise that you are not alone. Are you in the UK?Jayne

Hello Hdee - this sounds very familiar. My mum 86 was living on her own. She started struggling to get up and down from sitting, and then increasingly struggled with getting around a small flat despite grab rails and railings everywhere. She had an alarm system so could ring when she had fallen but I couldn't always get there due to work and she'd be left waiting for the paramedics as she couldn't get up on her own. She never hurt herself very badly - she would sort of gently collapse! When she started falling more than once a night we decided a nursing home was needed. The last few days while we were waiting for a space my husband and I had to take it in turns sleeping there overnight - no suitable room in our own house. That all happened over a period of about 6 months. In the 6 months since then while in the nursing home she is really struggling to get herself up from the bed and chair more and now has to use the wheelchair all the time. Unless your mum can afford 24h live in care at home without selling her property, or you can both cope - and have the space - with her moving in with you, you may be near the stage of looking for a nursing home. Bringing carers in a few times a day really doesn't work for people on their own with this disease at the middle stages before being bed bound. I started looking at nursing homes a couple of months before it became necessary so it wasn't all a rush and panic when the time came - that certainly helped. CHC funding isn't a possibility at this stage and yet 24h care due to physical disability is needed - one of the many frustrations....

Hi there, she should probably not be left alone anymore, the falls can be very dangerous, and hitting her head could get a brain bleed, I always suggest a head helmet , a wheel chair is a good option at this point, this is a terrible disease, and unfortunately continues to progress. Sorry my brother is 10 years with PSP, believe me have seen it all. Take care. Nettie

Thank you for sharing this. I began reading your post and immediately thought it might have been something I had written previously. There becomes a point where the number and severity of the falls is problematic. My mother is not alone and services are coming in. She just came home from the hospital last week with staples in her head. Thank goodness no bone breaks. I don't know if this is for most experiencing PSP, but the area of the brain that manages our judgement becomes greatly impaired (i.e. deciding not to reach to try to turn off a lamp as I could get hurt and instead just doing things and not able to make a good judgement or wait til someone comes to do it). This has progresses to the point that my mom can't be left alone in the bathroom or anywhere as her safety is at risk.

If your mom still wants to be in her flat, I'd also recommend getting more services in morning, noon and night and as you have have as many safety precautions and support in place.

At some point, like where we are at, a very difficult decision and plan has to be put in place to ensure as things continue to worsen actions are taken to ensure overall safety when 24/7 care is a must. As everywhere here has shared, it just gets tougher even for those that are the immediate caregiver.

Let me know how you make out.

All the best.

Deborah

Lots of good advise has been shared. Personally l would have a wheel chair available for her... she might like it. My mom hated her wheel chair at first but later used it willingly. Sending hugs to you and your mom... Granni B

When my husband was diagnosed with CBS, his doctor suggested that I get a transport wheelchair. He could still walk at that time, but the doctor said walking would become increasingly difficult and it would be useful for longer distances. I rented a transport chair the next day. Initially, we used it occasionally, but as walking became more difficult we used it more frequently. He does not have good control of his right hand and arm, so he cannot push himself. We had an occupational therapist evaluate our apartment and they made recommendations for grab bar placement, a bed rail, raised toilet with assist rails, threshold transitions, and furniture rearrangement. Currently he can only walk a few steps with assistance. He got a power wheelchair last week with joystick controls for his good hand and arm. He is still learning, but it has given him some independence. Hope this helps you.

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