PSP - What has helped you? Please tell me about it...

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PSP - What has helped you? Please tell me about it...

Postby Alana » Sat Sep 19, 2009 8:16 am

I am writing to ask for your assistance. My husband John has PSP. He currently walks (stumbles) unaided & says his walker isn't any good as it runs away from him. John is having sight, speech & swallowing difficulties & walks backwards if in confined areas (much of the house). The weird & bizarre is that he can he ride a bicycle (mind you I have to laugh or cry when I watch him get on & off it !! ) John is 55yrs old, I'm 45 & we have a 6 yr old daughter. John was diagnosed with PSP 2 yrs ago and symptoms started to appear when our daughter was a baby. I've been making changes to our home located in Western Australia (since we in moved in 3 yrs ago) to enable John to remain in our home & for us to remain as a family unit. Unfortunately much of our of our family have a complacent 'Bury your head in the sand attitude' with a view that any changes are either unnecessary or unwarranted as John could/should go into a nursing home. This is something I'm doing my damnest to avoid. Perhaps too idealistic? Time will tell.
I'm curious, What sort of resources have you called upon? What sort a physical changes have you made in the home? If you live in Australia (or ideally Western Australia as we seem to be a particularly divided nation) how or where have you obtained funding for services, equipment? What footwear, walking frames, gophers, wheelchairs, bedding have been considered, selected? What medical professionals do you liaise with? I'm limited to a neurologist and occupational therapist who are very eager to learn & assist & direct other 'Allied Professionals' in the community to provide assistance to us. However just like me, they require a little direction.
I ask this because I find with every person I deal with (except our neurologist) is unfamiliar with PSP. It means starting from the ground up which does sap the energy! For example John's walking ability is quickly going, and his voice - volume & tone has reduced significantly over the last month. I've been able to 'queue jump' (rather than waiting 6 to 12 months!) to get in to see the 'right people' to provide assistance but have been advised that I need to put proposals forward to what is needed before it can be provided (this includes on a trial basis). I've already been asked 'What walkers have assisted other PSP sufferers?', 'What type of footwear has been helpful ?' 'Has there been any computer equipment which has proved useful. 'What chairs have made life easier?', What beds are considered ideal? 'What else do you think we should look at?' I'm sure the questions will continue but before they overwhelm your help would be appreciated,
Posts: 2
Joined: Mon Sep 14, 2009 8:43 am
Location: Australia

Postby Robin » Sat Sep 19, 2009 8:57 am


You might post this in the General Discussion area as this area is supposed to be primarily a place for patients to post.

There are several Australians on this forum. (There's a fellow named Doug, for example.) I suggest you do a search on the word "Australia." Or, if you have patience, you can do a sort on the column "Location" in the Memberlist and find anyone who lists "Australia" as the location.

One of the world's top experts in PSP is in Australia. He's at Monash University in Melbourne. David Williams, MD. If you can, I suggest a visit to him or at least have your neurologist consult with him.

Good luck,
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Joined: Fri Feb 20, 2004 2:32 am
Location: USA - Northern CA

Postby robertvalerie » Sat Sep 19, 2009 5:20 pm

Alana, there is a fellow named Tom in Queensland
I hope you have a good day
Posts: 9
Joined: Thu Jul 23, 2009 1:43 pm
Location: Winnipeg Manitoba

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