Progressive supranuclear palsy or psp

[devine1dm]

I'm a caregiver for a woman who has this disease. Everything (which isn't much), is negative. Does anyone care for a person with psp and can give me some pointers on helping her through this. I went to the library and there was 1, 2 page section on this disease. She cannot walk on her own due to poor balance. Dhe tends to fall backwards. The article i trad said something about a weighted walking aid. Does anyone know what this is?

[Dadshelper]

Dad has CBD, similar to PSP. If the lady is falling often it is time to only let her walk with a person to "assist". A gait belt will be helpful in controlling the fall to avoid injury. Depending on her physical condition/stamina it may be time to consider transferring to a wheelchair.

Ron

[honjen43]

Hi devin1dm, you have found a forum where PSP is the 'norm'! We all understand what it is and what it means to live with it day by day.

Someone who can answer your question through personal experience will respond soon.

My experience s with nursing my husband through CBD, which as Ron says, is similar. Both seem to be part of what has been labelled as Parkinson + since initial symptoms are similar to Parkinsons and this is often the initial diagnosis.

All strength to you and your dear patient!

Hugs

Jen xxx

[raincitygirl]

Hi Devine;

We have a very knowledgeable member (Kevin) who often directs new members to the PSP Association website. (He's under the weather at the moment!) I've tried to copy the link below, here, for you. If it doesn't work, just google PSP Association of the UK. They also have a helpline number and are a good resource.

pspassociation.org.uk/infor...

I also point you to two resources on this page: a list of related topics that always show up on the right hand column of the page, and the Search PSP Association window on the upper right corner of the page. You can also type your question into Google and add Health Unlocked into the inquiry and you'll get a good search of 7 years worth of posts from this website.

There is a lot of information here and many members have contributed over the years. Topics you'll find covered are:

Balance, Dizzyness, Walking Instability, equipment .....Pain...tiffness, rigidity... Incontinence.... Eating, Choking, Swallowing, Tubefeeding, PEG...Sleep problems... .Apathy & Personality Changes....Gaze, sight, blurred vision... Cognitive Loss, Dementia, Behavioural Problems...Speech & Communication Loss.... and of course, lots of sharing about medications and technology to assist all these symptoms and stages . (Not every patient gets every symptom.)

Also we discuss Care for the Caregiver - a very important topic!

While we wait for more experienced folk to chime in, have a look through the historic posts, and I'm sure you'll get more responses soon.

Best wishes to you

Anne G.

[devine1dm in reply to raincitygirl]

Dear raincitygirl

Thank you so much for your helpful information. I am so sad to say that my lady has several of the symptoms you have listed. The site that you listed is very helpful and i appreciate the time that it took for you to respond.

[bsilverman]

I think you might have already found a great resource. Just keep an eye on these posts and you will learn a lot. Another great resource is Cure PSP. Their website has a booklet you can download for a very thorough overview.

My husband who has PSP uses a walker/ rolater. But any kind just won’t do. We have one called U-step that has 7 wheels and is pretty heavy to help keep him grounded. But it’s so heavy that I can’t manage it very well when we are out and about. For excursions I use a 4 wheeled walker and weigh it down with an extra 15 pound weight that I can take out of it’s pocket so I don’t have to move all that weight at once. That said, if I don’t pay attention while he’s walking he will just push on even if there is a ridge or bump which isn’t handled well by either walker. He has gone straight over the top of them more than once.

We do the best we can. It’s wonderful that you are so concerned.

[aliciamq in reply to bsilverman]

We needed to stop using the U-Step. It was great for a while. I had to be right at my husbands heels with a sheetstrip/gait belt anyway. Right now we use a regular 2 wheeled walker in the house Still with Jack belted and me at his heels. I need to gently coach all along the way. It's exhausting for him and as the day goes on his ability lessens.

[JR61]

pspassociation.org.uk/for-p... this link may be of assistance to you too. Take care and best wishes to you both. Ruth x

[Hidden]

Having an occupational therapist come into the home would be helpful. They could show you how to do things.

[doglington]

Welcome to this site. There is lots of experience here. Perhaps you could tell us a bit more about your present circumstances. It is very frightening to hear too much too soon !

My husband had PSP and I always needed to be with him when he used his walker as he would head off very quickly in a sort of slow fall. It had a little seat so he could rest on it.

love from Jean x

[aliciamq]

There is a walker called a U-Step. Very nice.

[Finoni]

We used a U-step for a while, but you have to grip the handles as you walk to release the brakes. It gave my husband carpel tunnel problems.

[Katiebow]

Ben used a U-Step for about a year and found it very stable. It is expensive but the wide base and weights made it safer than usual walkers, it is also very heavy to transport. It was especially designed for people with balance problems. Hope that helps Xx