My husband has been diagnosed with PSP at the beginning of 2012 after a copule of years of symptoms slowly appearing.
At the moment he uses a rollator and my arm when walking outdoors. We are looking at the possiblity of using a wheelchair for longer outings. Does anyone have advice on wheelchairs? Also whether we should rent or buy.
Has anyone used homeopathy to relieve symptoms? If so, did it work?
This is my first blog and I am very grateful for all the blogs on this site. They are so helpful and encouraging.
Thank you for any advice - Maddy
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MaddyS
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i ws dxd at end of 2010 and have done all that theConsultant asked / advise dme to do
i was usign a4 wheel rollator friame when outside btu foudn i was bettter r ebalance and posture by usign an arm and a walking stick
i do however still fall a lot 5/6 times daily on a good day btu wear break dancing knee pad s 24 /7 as i always fall fwd on my knees!
i actually hire d and jbough t a wheelchair when i fractured my ankle 5 yrs ago- jus tfor indoors but the OT will advise youon wha twoudl be best for youre huysband
an electric one mayh be the bette rone to go for or a glide aroudn one for a thome
i am not at that stage yet and amsure i hav ehe SLOW sor tof PSP
My late husband got a wheelchair throught the NHS. I took him to the wheelchair supply unit and they tailored one to his size, and the width of our standard (narrow) cottage doors. I bought an electric one for him but it was hardly ever used, they do not fold up inside the house because of the batteries. You should think of the usage, storage, house style, portability. Can you lift it in to a car? Can he push the self propelled type or will it be an attendant one. Take your time to evaluate his needs and yours.
We were prescribed a wheelchair through the OT but as the previous comment says, take your time when selecting one. We were given a battery powered chair by a friend but the battery is sooooo heavy. I cannot lift it by myself. We had a wheelchair through the NHS but to be able to lift it into the boot of the car, I had to remove the wheels, foot plates, etc as again, it is sooo heavy. A friend has now loaned us a much lighter one which folds up and I am just about able to lift it without help. Unfortunately, to be strong enough to hold the patient, they are mainly constructed from heavy steel - even aluminium is heavy to lift with wheels, etc! Hope you get some help and advice, but I think you will find that a lot comes down to personal choice when you are making a selection.
Welcome to the world of PSP. We all know how cheated you must feel that your lives have been so changed by this horrid condition, but we are all here for you if you need advice or just to have a rant when things get on top of you (and they will from time to time).
Peter was adamant that he wanted to walk as much as possible for as long as possible. We did eventually, via GP/OT etc get a wheelchair which proved marvellous for trips to the pub! When walking however, Peter was very doddery but he would put his arms on my shoulders and I would walk head of him. Sometimes we would do the 'Gay Gordons' and with his right arm round my shoulder and the other holding my right hand across my body, we managed to be pretty steady!
How do you all get on with rollators . My husbands brother he also has Parkinsons. , and falls all the time uses a three wheeled walker but I think it sometimes runs away with him . He has also bought himself a battery scooter, not sure if he SHOULD be out on the road with it personally .
Having said that there they are dangerous things in the wrong hands , a lot of people who use them are a B..... nuisances .
I turned my back one day in our local market and My husband got knocked over by one . He was probable more disabled than the person in the scooter ...So it is one of my "soapbox" things lol
My husband cannot manage a walking stick and I am wondering if a 2 wheeled walker with sliders on the back might be more suitable and safer to use .
He was given a wheelchair , the district nurse organised it . It is made to measue etc but is still heavy to handle as well as lifting in and out of the car ..
I wondered if an aluminium wheelchair with larger wheels might be lighter and more manageable .. Any ideas / advice anyone .
I don't mind paying to get one ourselves as long as it works for US ..
At the moment I am his walking stick /walker etc Among many other tings lol
My Sis, the physio, really dislikes the three-wheeled walkers as they are not always stable so I think she would recommend a four-wheeled one. Mum used one of these briefly. Hers had a seat with basket under it and could, in a pinch, be used as a temporary wheelchair. As far as I know, the two-wheeled variety with sliders on the back are called a rollator frame and are for indoor use only.
In USA if on Medicare you can go for therapy. We did and they had man from wheelchair company meet to discuss best options and to measure. We prefer the UStep walker. It doesn't move unless you grip handles. Opposite of rollator where you have to apply brakes. UStep can be used to help you up because it won't roll away from you or move until you grip handles. If you start to fall and let go of one handle brakes come on. I think it's much safer. Brakes are better less adjusting often. If you follow this site you will find those who have tried about everything.
It became pretty evident that his symptoms were getting worse after we started him on it, so we soon stopped the homeopathic medicines and reverted back to giving him Coq10
I find the u-step walker is marvellous. When I go out I use a walking stick or hang onto my husband but when I come home I can't wait to use the u-step walker.
I hate going in shops at the moment as I keep stalling even when I'm with my husband. Although I have a wheelchair I'm a bit reluctant to use it as I want to keep walking as long as possible.
i was lucky enough to get my U-step walker through the Physio at the hospital . I had to wait several months for it to come and didn't realise it would be a U-step walker.Could you try to get one from your hospital it's worth a try! I think everyone who sticks should have one.
Hi Maddy - as far as wheelchairs go - my dad was severely rigid and stiff and would slipp out of his wheelchair - -we changed to a tilt-n-space wheelchair and it was a Godsend. As far as homeopathy -unfortunately - we saw no improvement.
Hello Maddy- I was given a small battery-driven 4-wheeled scooter which I find very useful for trips into town - about 1 mile away. My wife walks alongside. I also have a wheelchair but find it only useful with someone to push it and carry it in a car boot. A 3- wheeled rollator also available but not appropriate for my stage of PSP. My favourite is still my walking stick but can foresee it as becoming less and less useful as time goes on and my condition worsens . Yours sincerely Austin Hewitt
Thank you for all your comments. This site is wonderful.
Hubby has a 3-wheeled rollator, he can not manage without it also needs me by his side to steer and watch out for uneven slabs. A 4-wheeled one would have been better, but as he is obstinate, would not agree to a rollator at first, then suggested a 3-wheeled one would be acceptable! So far we manage well.
MADDY. I HAVE A WHEEL CHAIR, IF YOUR IN THE U.S. & HAVE A HEALTH CARE SUPPLEMENTAL INSURANCE YOUR DR. CAN ORDER IT FOR YOU. IF IT'S COVERED BY INSURANCE YOU CAN PAY YOUR COPAY AFTER THAT , THE CHAIR WILL BE YOURS. I WAS LUCKY I FUND MY CHAIR AT A GOODWILL STORE FOR $ 20.00. IF HE IS ABLE TO STAND & CAN HELP YOU GET IN & OUT IT SHOULD BE GREAT FOR YOU TO TRANSPORT HIM TO THE SUNSHINE & FRESH AIR OR JUST TO GET YOU OUT SIDE WITH HIM. HOPE THAT HELPS MADDY BEST OF LUCK.........GENA
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