St. Louis MO USA

[Msmariposa]

MsMariposa here,

My sister, already severely crippled from RA was diagnosed two years ago with "dementia" and only this summer with PSP. Her family is in denial. Last week her husband dropped her, causing both femurs to break, the right one could not be surgically repaired. Because she is in a rehab hospital, her husband thinks she will walk again.

I am trying to learn as much as possible about PSP, and especially how I can help make her days a bit brighter. Suggestions?

So far as I know, there is nothing like this forum here.

Mariposa

St Louis MO

[Hidden]

Welcome Mariposa to this site. Firstly, there is an excellent USA site called CurePSP with extensive information on PSP/CBD along with educational information. Perhaps you could join their forum as well as this one.

This site - PSPA - also has a comprehensive range of information relating to PSP which you need to investigate. This forum will connect you with people who are both sufferers and carers.

Your sister will continue to have balance problems, which will worsen with time (sadly, exacerbated by her RA). It seems she is at the stage where she will require constant supervision when "moving" (if she ever recovers "mobility" from the two femur breaks). The hospital OT's and Physio's will hopefully guide you and her husband with respect to mobility aids.

If she is not already taking medication for bone strengthening, she needs to be prescribed this medication (like Actonel) if her doctors agree. They may perform a DEXA scan to see if she has osteoporosis (although, I guess this has already been done).

Others on this site will probably give you lots of suggestions about "making her days a bit brighter".

Take care.

T.

[LynnO]

Hi Mariopsa,

Sorry you have to be on here, but you are the closest to "home" for me on this site. I'm about 70 miles west of St. Louis. I very much understand your sister's family denial of this horrible disease, but eventually they will have to learn as much as they can too, so they will know what might be in store for them and your sister. Symptoms differ a lot from one person to the next the more people you find to talk too, the better picture you'll be getting. Strelley is right about the website CurePSP.org. It is a wealth of information, but I must say I have found this support group far more helpful and kind. We are currently going to a neurologist at Washington University, but sometimes it is very difficult to get a straight answer from him. He thinks possibly my husband has PSP or CBD or a combination of the 2. My Husband has a lot of cognitive issues also, and a lot of short term memory loss. Although he still has certain parts of the day where he will be mentally pretty good. If your sister's GP has a pretty good understand of this disease that will be very helpful, if not I'd try and talk her family into finding one that does. The more support they have the better. Hope is never a bad thing, and if it keeps your brother-in-law going than he should hang on to that...but he also very much needs to know the reality of this disease. I hope you can share that with him in a way that he will except.

Keep reading posts here, they will be very helpful.

Lynn

[sidharth_roy]

I understand in USA lot of testing is going on . PSP is very frustrating with no cure as far as I know .

[cabbagecottage]

don't be proud and accept any aids offered ,

[jillannf6]

i agree with cabbbagecottage above- plz accept any help which you are offfered whether free or not

it will help keep u and ur loved one sane

lol Jill

[zjillian]

I was a bit troubled by your note. Your sister's husband obviously needs some help and possibly the family needs to talk with a social worker. Dropping her needs to be really talked about and understood and the denial confronted. Does he want out...is it too much for him? in any event see if you can give them at least some literature and encourage them to read and join the group. You are in a difficult position. Keep writing,

Jill