Hi everyone, I don't post very often, but read this website almost every day. It's such a comfort to be able to feel less isolated.
I convinced hubby today to try a wheelchair. Although he's still walking, it's quite slow, always holding onto me, and it really tires him out. As a result, we've become very limited in what we can do and tend to be quite home-bound or restricted to short walks in the immediate area.
Hubby really enjoys watching Grand Designs on the telly and wanted to go to the Grand Designs show. I suggested to him that because he gets so tired, we should try a wheelchair just to get around the show and he agreed. I was worried it would be difficult for him to accept and maybe a bit emotional, but it was really great. I think he appreciated that we were able to spend quite a few hours at the show and we ended up having a really nice day out. He's said he's keen to do this again, so now we can finally get out and go visit all those museums and galleries that we haven't been able to do until now
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Sawa
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The decision to use a wheelchair comes to most PSP carers and their loved ones. It seems both of you enjoyed your day out because of the wheelchair.
There's always a dilemma between trying to keep our loved one mobile to prevent osteoporosis and muscle stiffness and atrophy, alongside the fact that their falls increase and can lead to months of hospitalisation with serious fractures. It's a fine line and Physiotherapist often help with this problem.
It appears your hubby has seen the benefit of using a wheelchair periodically at this stage in order to enjoy outings. It's so important to keep him occupied with things he likes.
My wife is more restricted to a wheelchair now as her walking shuffle is limited to a couple of meters even witht the help of our Physiotherapist, but she loves being outside and seeing things.
Lovely to hear your story and may you have many more outings and enjoy the visits to those places of interest.
Hi Strelley, thanks for you kind words. It was a tough decision to get to the point of talking about the wheelchair. I certainly don't want to hurry him into using one full time - while he's still able to walk, I think it's important for him to keep mobile and also to keep his independence as long as possible. But yes, it does have it's uses, and I have to say, it did really allow us to stay out for much longer, so worth it, I would say.
I too am now using a wheelchair for my husband. He has been using a walker or his electric scooter up to now but he is much more restricted than just a short time ago. I have found the wheelchair very helpful as well and I think he is also resigned to the fact and has accepted it quite well. Good luck to you with everything you encounter in dealing with this disease. I also don't post that much on here but I do read it daily and find the site so very helpful. All the best and take care.
My Father in law uses a wheelchair and it is invaluable for his mobility. We can take him out for lunch etc but because of his coughing while he is eating and drinking he now prefers to eat at home.
He also uses the wheelchair in doors and he can "scoot" around using his feet and it gives him pleasure to be able to move around unaided.
We don't have an electric wheelchair - just borrowed a manual one from the actual exhibition hall. I was afraid it would be really difficult for me to wheel him around (he's over 6' tall and weighs nearly 100kg), but I didn't find it tiring at all. In fact, it was easier for me not to have to hang onto him and walk at his pace, checking all the while for things to trip him up! I love reading your posts, by the way, you always make me smile
Great to hear that you had an enjoyable day. Please continue to do so.
If back pain becomes a concern.... For info the following...
My husband uses a manual wheelchair when attending football matches with large crowds. (A carer who is also an avid follower takes him along). I doubt if he would attend otherwise. All is too hectic and he moves too slow and also if John travelled by foot he would be too exhausted to enjoy the game, As John sits in the chair for quite a while he was getting quite a sore back. I found my husband's occupational therapist at the local hospital & the local Red Cross shop (they have a Aust Govt Veterans contract for supplies) really helpful with wheelchair cushion options. I did not realise there there were so many types on the market. John found the air filled Roho cushion was excellent for about a year - he used it on his recliner as well, then thought it to be uncomfortable (I am glad it was loaned to us (Unbelievably big $ to buy - we joked it was gold lined ). Since then he has found two other types of cushions more suitable. One I would describe as tripled layered (the middle has a high index latex and and the outer layers are memory foam and it is cut to have high sides. The other is simply a square piece of latex with one side covered in memory foam and the zip off cover is made of a slippery polyester fabric.
Thank you very much for your suggestions. I'll start keeping an eye out for the cushions you mentioned - always good to prepared for when you need these things.
Mum was always against things like this but when the time came it was a case of either not going somewhere or using the wheelchair and because she loved going out it was much more acceptable to her than I expected . She was able to look at what was on the shelves instead of worrying about falling and it meant we could go out for a meal without issues over the seating.as mum was no longer able to bounce about to move a chair in towards the table.I was able to get her out and about until 6 weeks before she died and that made her quality of life so much better.
It is getting to the stage of wheelchair or stay at home, certainly for anything that's more than half an hour or so. I also think it will depend on how good a day he's having - if it's a good day, we'll walk, but if he's having a bad day, it's useful to have the back-up of a wheelchair so we don't end up having to stay indoors. I think getting out is really good for his quality of life and it keeps his spirits up.
We put off having a wheelchair for my Mom, Irene, for ages, until the Occupational Therapist came to her one day and insisted she had one - it was delivered within a week (unusual for things round here !) and it was the best thing we got from them - it was heavy but it gave us a lot of freedom, going to shopping malls (we found some towns, e.g. shrewsbury, awkward because of hills and steps into shops etc so couldn't really do those) and I could hang my shopping off the handles Sometimes she'd get to the shopping mall and fall asleep in it ! I still insisted on her walking round the house and garden with me assisting to keep the muscles in her legs ok and she did that till the day she left us. The wheelchair was great though for her and easily gave her a new lease of life !!
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Ridgidity and pain and bending 
Can you stop rabbiting?
Chris 
psp - how bad can the leaning get?
Wish we could get an idea what stage dad is in (and how much longer he has)
