Would be interested to know if anyone with PSP uses a U step walker frame? if so has it been helpful and did you have to fund it yourself?

[PSPA_JillL]

interested in funding in the UK

[Kathy]

Hi Jill,

In my "other" life as a physiotherapist I went on a PSP course in Derbyshire. Part of the programme was "patient experience" and a gentleman with PSP came in to give his side of the story. He had a U step walker and found it really helpful. He said it had made a big difference to his walking.

From what I remember he got charity assistance with funding, otherwise he would have had to fund it himself.

Hope that helps

love Kathy

[jillannf6]

hi jill

i di d not go for the U step walker as i always fall fwds not backwards

and the walker is jmore for the latter

I do nto htink the local Physiothrapy woudlhave funded it as it si so expwensive but they did fudn e partially for a 4 wheel frame rather thana 3 wheel frame which keeps me more upright#

it si a matte rof knwoign what to ask for

i think

JILL

l-)

[denmob]

I don't know but like u I have been investigating it for my husband especially with the laser addition. I have discussed with our gp and she is going to push through an OT who is meant to come and asses my husband but to date has not made any contact! How long does it take OT's to make contact? It is so frustrating, it makes me angry. PSP is not like other conditions that have specialist groups to support us and when it is possible they may be able to help they are nowhere to be seen. We have lived with this condition for 8 years and have managed on our own throughout that time. Now we have asked for this one thing we have no reply. Even a no would be a step forward. Sorry for this moan but when there is no hope of a cure or proper medication quality of daily life becomes even more crucial. Sorry again for the moan.

[PSPA_JillL]

Hi All,

Thank you for your replies I am one of the PSP nurses and we would recommend that every person with PSP has an individual assessment to see if a walking aid would be useful. I have many reports of how useful the U step is(usually without the laser as this is not usually necessary) However lately we have had a number of people who have had difficulty getting funding that is why I asked the question to see if funding is an issue everywhere.

Dear Denmob,

You are fully allowed to moan here, you shoul go back to your GP and ask for him to chase up the referal to the OT and find out how long you should expect to wait to hear from them and he should also refer your husband to the Physiotherapist

The PSP association runs support groups for people living with PSP and those caring for them we aim to cover all counties but are currently recruiting volunteers for this in some areas I dont know where you live but there may be one near you. Also you can phone your PSP nurse for support and information, if you are not yet a member call 01327 322410

Best Wishes Jill

[denmob]

thank you all for your replies. We have a wonderful Parkinsons nurse who has been really supportive and I spoke to her about the u walker. She has immediately set the ball rolling. It is heartwarming when someone answers a request for help and gets back immediately. I can't thank her enough. She has also got the OT to contact me and he will ring to make an appointment early next week. The GP has also chased up for us. She has contacted the physio about U Step walker who today rang to make an appointment for next Wednesday. It gives us a feeling that there are people out there wanting to help. We just need to speak to them. Today I feel so much better because it has given my husband encouragement - so now the fight against PSP will go on.

[salman]

Hi - my Dad used a u step for two years or so. I'm sure it saved him from many falls. Though it does not help if the cause of the fall is orthostatic hypertension.

[PSPA_JillL]

HI Salman

Can I ask if you bought the U step or if it was supplied and how long ago this was?