Hello all
My father was diagnosed with PSP about six months ago. He is still walking every day, but he is finding it very hard now.
When, ultimately, these walks become too much. I would like to know the best chair options, given that his primary carer is his wife, who is petite.
Are manual wheelchairs too hard to push if the person in them is much bigger than the person pushing?
Is it appropriate for someone with PSP to operate a motorised chair?
I would appreciate your advice on this.
Thanks
Are you going to be moving around inside and outside the home? If so may need 2, a smaller transport chair to fit thru a normal interior house doorway and normal style for outside.
Motorized will cost more and depending on the progression path of the PSP not useful in the future unless someone else controls it.
Ron
Probably both - the home has recently been modified so it is chair ready/friendly.
If you can afford it, or if you can get the wheelchair service to provide it, do get a powered wheelchair with carer controls. It made all the difference to my husband's life as we could continue to go out to nice places and to see friends and family in our WAV right up to a few weeks before he died. Not only that but it was the most comfortable place for him to sit during the day time as it had the correct support. He did not find any armchair or riser recliner comfortable. When we first got it he could just about operate the control himself, although steering was a bit unpredictable! Eventually we used only the carer control and I switched the other one off for safety.
Vicki
That's great, I didn't know there were carer controls. This makes so much sense. Thank you.
HI Vicki- would you mind share the model or type of chair that your husband found comfortable?
If you can make the model or type of chair that your husband (Vicki) found most comfortable, I would be interested in this info as well.
I'm afraid we had to fight fight fight to get the wheelchair that was suitable for my husband's needs. It was time consuming, hard work and stressful! Eventually they agreed that we were entitled to it. I'm afraid my advice, as with a lot of things regarding PSP, is not to take no for an answer.
Powered chairs are available with carer controls so the 'patient' does not need to be able to operate it him/herself. The NHS wheelchair service takes the view that the provision of a wheelchair is to enable the patient to retain independence and that therefore they cannot provide one if the patient is not independent. My argument was that my husband would lose his independence if he was not able to access the outdoors, his family, the hospice day care centre etc.. Once he lost the ability to transfer to the passenger seat of a car none of these things were possible. With the powered wheelchair and WAV (which we paid for ourselves) all these things were possible. In addition I argued that the OTs were supposed to provide him with a suitable chair to sit in during the day and since none of the available arm chairs was suitable for his needs, the correct wheelchair was the only option.
The wheelchair service were hard work but we had the support of the OT, the GP and the excellent Parkinson's Nurse. I'm afraid it's just another example of the rules not applying to people with PSP as the rules are written by people with no knowledge of PSP.
Don't give up!
Vicki
Can you please tell me what WAV stands for .yiur post was very helpful. I did not realize that power wheelchIairs that could be controlled by a career were available . It sounds like exactly what we need, as my husband is not easy for me to push ,
Thanks again for your post
A WAV is a wheelchair accessible vehicle. We had a Volkwagen Caddy. It had a rear ramp and lowered floor to enable the wheelchair and passenger to go in the back and straps and clamps to fix it to the floor. Ours had a manual ramp but some have a powered ramp so it is not heavy to operate. There are various makes such as Peugeot, Citroen, Renault and Vauxhall. The advantage of the Caddy was that it had a full row of rear seats as well as space for the wheelchair so that we could transport grandchildren and the dog as well. In some models one or more of the rear seats is removed to accommodate the wheelchair.
In UK there are specialist dealers for WAVs and there is a good secondhand market for them as so many people only need them for a short time - see EBay!
Vicki x
I Agree with vlh4444.
My wife has regularly used a wheelchair since June 2016 (Four years after first symptom) . The wheelchair is made in aluminum and is foldable, easily transportable in the trunk of a car .
Also a anti-bedsores cushion is advisable.
I have a metal shoulder and I frequently need the help of a caregiver person.
Hi,
I went yesterday to sort my dads new wheelchair out. It was very hard work to get what we wanted they refused, eventually with the understanding of my dads needs he’s hoping to get a special function wheelchair that tilts, has a neck rest and will stop him sliding out or sloping to the side.
I'm currently in a position where I have to request (argue) that my brother needs the type of chair you described. What arguments convinced them in the end and/or was your dad assessed by some type of health professional? Thanks
When I saw my dads PSP consultant he recommended that we bought a special function wheelchair to help with my dads posture for when he eats to make sure his body is upright.
Before our nhs wheelchair meeting my mum phoned up the Red Cross for help as these wheelchairs are very expensive. They couldn’t help. My mum then spoke to his doctor and explained the stages of my dads illness. I phoned his social worker too. Eventually the Parkinson nurses called to see my dad at the nursing home to take measurements and to check his needs.
The engineer at the wheelchair Center wasnt willing to give my dad the correct chair he wanted to provide my dad with a normal wheelchair but with a higher back and back cushion to keep him upright. When I returned my dad to his nursing home I spoke to the main nurse in charge and she was amzed that my dad wasn’t going to be given the correct chair. Fortunately, she phoned the engineer and put all the problems to him about my dads problems and he eventually agreed to give my dad one.
Good luck.
Your OT can refer you to your local mobility centre and they will come and measure your father and provide a suitable chair on tha NHS .You can also get a clipon electric motor called a powerpack which assists pushing .We were lucky ,our area supplied one but you have to ask.I bought one to start with as I didn't realise that they can be supplied . Even without a motor it is quite possible for someone small to push a larger person in a chair as long as it is fairly flat .It would not be a good idea to get a chair that the person with PSP can drive as their sense of spacial awareness and vision deteriorates and the ability to control things with their hands goes as well .
My brother wanted a motorized chair. Because of PSP, he did not recognize that driving one could be dangerous for himself or other. He was told that if he cannot drive a car, he cannot drive operate a motorised chair. He had lost the right to drive his car more than a year prior to his request.
Because of PSP, he insisted in at least trying to operate a motorised chair. The OT knew that he would failed the test but let him have one. He did not pass the test.
Hi Joanne, thanks for posting your question as I too have been wondering on what type of wheelchair is needed. Like you dad, my husband is becoming more unsteady and finding walking difficult at times. Nanny857 xx
I am a PSP patient and use motorise wheelchair which makes me feel empowered.
To end up in a wheelchair. It came as a shock to me that day. I just felt like I would never be able to stand on my feet again, and I got desperate. Now I'm dependent on scootersnchairs.com/collect..., and it makes me sad. Certainly, wheelchairs are much more comfortable now than they were a few years ago, but the fact that you are confined to a chair by circumstances makes me depressed. I struggled with it all for a long time, but eventually, I just got used to it. At least I'm comfortable.
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