My husband has PSP and his mobility is very limited. Can I expect him to be confined to a wheelchair eventually?

[gp1943]

The reason I am asking is we would need to move to a more suitable house.

[jillannf6]

hi

i too have psp and was dxd in dec 2010

i am still he ehavign jsut mvoed to a ground floor flat where i live

and i expect to eb in a wheelchair eventually

but am walking as bes ti cna without my 4 wheeled frame a tpresetn

and am sitll falling voer too much

but is ther e no way you can adapt hte house you have now

moving si so stressful!!

lol Jill

[kittens]

Hi P.SP. hit me in 2010 when Im with hubbie the walking stick is used on my own out comes the walker or scooter for shopping. Waking is very hard for me because of the falls he will let you know if he needs more help. Enjoy each day as it comes take care Sandy

[peterjones]

hi im peter jones from brisbane australia i too have psp i have had it since 2004 but getting back to your problem is your house a low set or a two story place i think i would be inclined to stay where you are for your husband sake he would feel safe and secure there i personally think it would be to much of an upheaval for him \\ unless of course you have stairs involved or other dangerous bits and pieces around the place which would be a concern to him as well as yourself i can tell you by experience its no joke when you keep falling over and your voice is so quiet no one can hear you when you call out unless you have an alarm on you\ anyway i think you will make the right decision when the time is right one way or the other good luck to you and your husband all the best wishes to you and your family peter jones australia

[gp1943 in reply to peterjones]

Thanks for your answers. My problem is that there are 2 steps to garden path from front door and then 4 steps up to pavement. There are handrails at the steps which my husband manages with my help but there would be no way I could manage a wheelchair up and down these steps if this became necessary. If we intend using the wheelchair I manage it out empty and then assist my husband.

[dorothy-thompson]

dorothy-thompson

My husband is rapidly coming to the stage where he will need a wheelchair I think. I am going to hire one soon as we are going away on a short holiday while the builders set to work in our new ground floor flat that we have recently moved to. We had stairs before and Harry could not manage them and we were very fortunate in finding a perfect ground floor apartment in the same area.

Moving is as stressful as you want to make it, just think of the end game. We're in a new local authority, have new doctors, new community care and up to now, everything has been mostly positive.

best wishes

dorothy-thompson

[jillannf6 in reply to dorothy-thompson]

hi dorothy

i am glad you have mor e positiv eapproach new LA /GP/ CONSULTANT?/ ETC

and hope hou have agood holdiah

there isno point watiing for a bette ritem with the spsp

lol Jill

[Hidden]

From everything I have read the wheelchair is almost inevitable. When my hubby was first diagnosed my inclination was to move to a more suitable house, but in the end everyone convinced me that home help would be my best bet because when he is not able to transfer between wheelchair, bed, car, etc I won't be able to do it alone. There are ramps that fit over stairs---sort of portable ramps that we found through the medical supply sites, but I will still need help.

My husband does not want to move (or really change much of anything), but I have made a lot of safety changes to the house in the last year. Sometimes I think I should have just pushed through and made the move. Who knows now? Honestly, there is no perfect solution. Talk it out with your husband,family, and friends. It's hard to think clearly early on.

Best of luck in your decisions. Be kind to yourself and seek help anywhere you can find it. I am so sorry another wife is traveling this road.

Many blessings,

Rosemarie

[cabbagecottage]

we have recently had installed a stairlift , they are quite expensive but it has been well worth it , in fact although it is my husband who needs it I injured my foor a few months ago and wouldn't have managed without myself . We have a wheelchair but so far cannot get my husband to go out in it . Not sure how I would manage to push it myself he is 78 and I am 75 ,..Already put in place all the neccessary grab rails and outside rails . We have 8 steps to the front of the house and two out of the porch . . I have put grab rails in all the places he needs .

The district nurse also put in a request for a hospital bed , our bed was far too high for him to reach and get on and my arms and hands having a toll . We had to wait quite a while but have recently given one on long term loan .

Things are not perfect but I am finding my way around the system .. The bed is a great help it lowers for him to get on I can then raise it when he needs tending to ..

My husband does not want to move .

[anne-cliff]

An assessment by your local OT for advice about disabled facility grants for work to your house would be useful. They can in some cases fund ramping,help with bathing equipment, door widening, ground floor extensions or lifts so you could stay in your current home. Contact your local council for the number. Even if you decide to not wait for the grant process, the advice would still hopefully be useful. Better to find out now than wait until you need it as there is a wait for an assesment.

[dllera]

Hi - I'm sorry to say that a wheelchair is inevitable. We ended up turning our formal dining room into my dad's bedroom and the formal living area into his TV room since he could not handle stairs. We used to carry him upstairs into the shower but then had to move to bed baths. Eventually we had to use a hoyer lift -we started only 4 months before he passed - to get dad in and out of the bed because he got those "spagehetti legs" and since I am only 5'1" it was hard for me to lift him up very high - -and he did experience pain. A tilt-n-space wheelchair was a life saver for us and we also had an adjustable bed that really helped in changing positions and making sure he was elevated for feedings. We also had ramps made to navigate the steps outside of our home. Also -on another note - if your loved one can still walk a even a little - you should try every day until they just can't do it any more - -I would set the wheelchair to the other side of the room and we would make a goal to walk to it - -it may have taken a while but my dad had much satisfaction doing it. The wheelchair got closer as time went on but I really think it helped my dad still feel like he could something.

[Peter2]

Hi GP,

My husband was very reluctant to use a wheelchair, but the OT handled the situation really well and managed to get my husband to agree to have one on trial. That occurred 4 months ago. He now has a wheelchair of his own. We mainly use it when we are out and it has made such a difference.

Like you, I have contemplated moving to a house that is more wheelchair friendly, but the rest of the family say we should just be adapting as my husband's condition changes. My husband is also keen to stay here but he can no longer move around on his own without falling over.

Don't do anything in a rush and see what other options maybe available.

Best wishes

Peter2.

[gp1943]

Thanks to everyone for taking the time to respond. Ever since my husband was diagnosed and I was made aware of the outcome of the illness, I think I have been way ahead, thinking about what might happen instead of taking things as they come and making the most of each day. His swallowing is still good but his eyes give him a lot of trouble and he tends to listen to the tv more than watch it, and his speech is becoming indistinct. I think if I knew what stage he was at it would be easier to decide what to do,

[hmfsli in reply to gp1943]

Hi gp,

As most have said a wheelchair is probably inevitable. It is definitely worth getting in touch with your local Occupational Therapist as they can give lots of advice.

With regard to knowing what stage your husband is in, as with most things related to this disease, it is not as clear cut as that. This is a very individual disease; it is not linear in the way it affects people's abilities and although stages have been identified there is a lot of overlap.

The best we can do is to take each day and each impairment as it comes.

h

[Hidden in reply to gp1943]

gp,

Last summer I was just where you are now, and hubby was still walking with a cane. Now he really can't walk without the walker and getting out of bed is really difficult. Last winter his therapists and dr wondered how long they could keep him on his feet and if we could afford paying for the expensive type of walker when the wheelchair was in his future. It really is hard to know.

Don't beat yourself up trying to figure out how this is supposed to progress. I have spent many a sleepless night after some accident or incident, lying there pondering what to do next, what else could go wrong, is this stage going to last, what if the drs don't really know....

My hubby eats what he wants but he does cough after somethings. His vision is declining, but he can't read but can watch TV. As for the stage, as the others have said, it's hard to know. I do know how you feel, though. ---- Rosemarie

[dllera in reply to gp1943]

Hi GP - here a couple of websites with some great information. May help you determine where you are in the progression.

pspinformation.com/disease/...

pspinformation.com/caregivi...

[marytea13 in reply to dllera]

dllera Thanks for these sites I will have a read + give them to my husband as he is my caregiver - diagnosed 2011 trying to keep active physically walk my dog with my walker! Play bridge in a learning mode. But keep wondering when things will hit me. Marytea13

[SheilaN]

Hi, although there are 4 defined stages of PSP I doubt from reading these blogs that anyone fits neatly into any one at any time; those with the condition tend to find that their symptoms overlap and differ from other sufferers.

I would ask your GP to refer you to social services. You will be allocated a social worker and OT/physio and things should happen from there.

Since my husband's referral, and as he has deteriorated and required different things, we have been given a bed lever, a shower chair, a rolator, a wheel chair, a hospital bed, adapted cutlery, a hoist, hand splints, incontinence products etc etc. We had the bathrooms adapted ourselves a while before he lost his mobility, but I wish I had had more foresight and applied for a grant. Unfortunately, even if they recognise the need, they do not grant retrospectively. I had grab rails put in the shower rooms and we inherited two. Social services have also adapted the pathway used to get his wheelchair out to daycare transport. There was a discussion about a temporary ramp which wasn't suitable here but might be at your property.We also get 2 carers 4 times a day and 3 weeks paid sitter service (booked by the hour) and 3 weeks respite care a year which I contribute to. There is an awful lot available. Once I had swallowed my pride and agreed to accept help and input life became very much easier for us both.

I should perhaps add that we live i Scotland and are very well supported and provided for.

I hope you are successful.

Take care

SheilaN

[groovychick]

For dad the wheelchair became inevitable. About a year ago his balance became so poor he was wobbling about all over the place and had many falls and many many near misses. We received one quite promptly after applying and it became a godsend. Dad took this next stage of PSP on with grace as he did all the others. We let the winter pass and around this time last year we took him out for his first outing in it. Parks, shopping, just for fresh air, it became his lifeline and a glimpse of his former independence. I'm so glad and grateful he got a decent amount of use from it before he passed. He loved sitting outside in the sunshine for ages and feeling the sun on his skin.

[Marykayrenaud]

Hello, I'm in the US. My mom has a very narrow wheelchair which let's her move more easily up and down hallways, and allows for more room in the bathroom, etc.