Hubby can now only shuffle from chair to toilet/bedroom, provided I hold on to him. It means he completely depends on me helping him around.
Is there an indoor walking aid suitable for him? The rollator and walking frame are useless, as he has no balance. I was thinking of a small wheelchair, however, that again means I need to push him. Anyone have any ideas/suggestions, not just for now, but also the day when he will be unable to walk.
I so much appreciate this site, reading all your blogs helps us deal with this dreadful disease.
love to all, Maddy
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MaddyS
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If you are in the UK it would be worth contacting the Occupational Therapist at your local council as they are trained to find solutions in these cases. Is there any way the frame could be weighted to provide a bit more stability or act as a counter-balance for example? Cultivating a relationship with the OT is important as they are the gateway to getting the equipment you need to care for your Dad and changing it as the disease progresses. We've given back the rollator frame, the riser/recliner chair, 2 different types of commode, the rotastand and I can't remember what else, as Mum has progressed and have had them replaced with equipment that helps, at least for now. Every time the OT has come and done an assessment before recommending a solution. We have sometimes had to wait for those recommendations to go to panel before we knew if we were going to get the equipment but so far it has always been a positive response.
I understand where you're coming from as we are in the precise position, however I am going to disagree to hmfsli regarding the OT, certainly from my experience, as our local one has proved to be incredibly ineffectual. So much so that we have done our own research and acted accordingly. At the moment I am also looking, on line, for a wheelchair, small enough to move my husband around the flat and pass through doorways as our current one - changed from a self-propelled to an attendant propelled - is still too big and we cannot widen our doorways. But our local Wheelchair service only provides "one size fits all" wheelchairs. But where I will agree is how quickly equipment becomes redundant as the condition progresses. Don't let our experience put you off though, not all OT are the same.
We are lucky with the OT we are under at present , it hasn't always been like that though .
Waiting for the delivery of a new wheelchair it had to made lower to accommodate a cushion . we have been waiting for ages now . This was arranged through the district nurse. The commode chair the OT waiting for a lower one also . My husband is short and no strength in his painful knees . As a matter of fact he is almost flat on his back in his chair . He needs moving but I am waiting for him to unfreeze ??????
Hi Maddy
Unable to advise about UK services, but others seem to be helping in this area.
My wife has PSP and is about at the same stage as your hubby (for about a year now) of only being able to walk very short distances (often only shuffling and with some freezing gait), using a heavy duty Zimmer frame and always with assistance.
Our homes have always had wide enough doors for wheelchairs, and our showers constructed (without hobbs) to wheel in a shower chair. I cannot offer much advice about other equipment to move about the home, but I decided from early stage not to have a motorised wheelchair because of the damage often caused by PSP sufferers since they are not able to judge distances (vertical gaze palsy etc).
I do know my wife has benefited from having a physiotherapist each week, who has kept her "going" with respect to walking short distances with her frame. It's also helped with lessening the chances of falling when moving short distances and doing transfers. This type of therapy is limited because the progression of this disease usually leaves the sufferer with little or no balance.
My wife has two wheelchairs, one for outside which she attempts to "push" herself (very slowly, for very short distances). I use this to help with exercising her arms and increasing her heart rate. It assists in my regime of trying to keep her weight down now that she is mainly sedentary. She has a smaller inside wheelchair, without large wheels for manual pushing - that I tend to push - but she can use her legs/feet to move short distances. All this effort helps as "exercise". I think it's so important when they become more wheelchair dependant to keep exercising the bits that still move (usually arms and legs when sitting). She has a set of pedals for moving arms and legs. While exercising is always going to add to the fatigue symptoms of PSP sufferers, it is important to keep them as active as possible, and not just sitting all day in a chair (that results in problems of osteoporosis and exacerbating muscle rigidity seen in neurological conditions like PSP). My wife does have a very stiff neck and upper arm discomfort (pain), but she still attempts these exercise!
I know some PSP sufferers want to be as independent as possible, but my wife came to the conclusion she would rather have me assist her in all movements and transfers (that I'm happy to do) than chance more broken bones and bruises that occurred in the past, that involved many hospital visits and casts and braces etc!
All the best and I look forward to what others share in answer to your query.
hi strelly - i am very interested to read about how you believe it is important for psp sufferes to be kept as acrtive as possible and that you are basicaly against motorised wheelchairs due ti the danger of not being able to see too well .... but it is desperately needed by me in order to get around the house as i need tio be able to feel useful ti my poor husband who like you does everything fior me,,, hense i have an appt to see a neuro here in france who will prescribe a wheelchair with a motor -- at least i hope he will !! i have a physio who comes 3 mornings a week at 7,30 in the morning and dispite the early hour we are very happy that she comes to help me
My decision not to have a motorised wheelchair was a personal one. I know carers of those with PSP have had difficulties with motorised wheelchairs causing a lot of damage to furniture and fittings. However, others have found them to be really useful. So, please go ahead and try a motorised wheelchair and see how you go, especially since it will give you some of that independence you want in order to help your husband.
When my wife was diagnosed with PSP, we downsized home, so she had less distances to travel inside. She initially had a four wheel "stroller seat walker". Although we had clear "pathways" around furniture, we found she was hitting walls, doors and a lot of furniture! It was when she had her last very severe fall that the Physio said she was to stop using the stroller, and had to use a frame with someone (me) to assist her every time she moved (and this meant she also needed to be in a wheelchair most of the time when travelling around, but we decided against a motorised one in case she hit more things at higher speeds!).
So please let me know how you go with your motorised wheelchair! I'm sure your physiotherapist will continue to give you exercises to keep yor muscles and bones as healthy as possible.
"... a set of pedals for moving arms and legs ..."
As an ex-cyclist, Tony appeared to enjoy the pedal exercise. Originally suggested by the neuro-physio - we had a good community team (OT, District Nurse etc) all working together. West Norfolk seems to be well catered for compared to some areas.
I understand the problems you're having as I have been, sort of, diagnosed with Corticobasal Syndrome which is similar to PSP. I researched a chair for myself to get around my home as the OTs were hopeless. I live in a Park Home (mobile home) in Bournemouth and everything they brought for me was far too big, in fact the equipment was more of a hindrance to me. They just have no idea how much I struggle everyday.
I found a chair online (on eBay) called The Avant Transfer Chair which is SMALL, but it wouldn't fit through the internal doors, so I asked Remap, a charitable organisation if it was possible to alter it, they did and now it fits through the doors !!!! The doors are only 23.5in wide, it will go through normal house doors without being altered. Its very small, lightweight and perfect for me to either shuffle myself or be pushed. It also folds for in the car.
I hope this helps you. If you have any problems finding it please contact me and I will send you the link.
I bought a two wheel wallet the back legs had the rubber ferrules . At the same time I order some sliders . I have removed the ferrules and used the sliders . it makes it easier to move without running away like the 4 wheels !!
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