Mom

[lolliepig]

My mother was diagnosed with psp in March 2017. I'm based in the US but found this site to be very helpful.

[aliciamq]

Glad you found it!!! I recently started participating and found information and real people who have more than a clue to what's going on with our lives. -- Alicia - Detroit, MI

[Crochetedcat in reply to aliciamq]

I'm from the US also, South Dakota.

[Hidden in reply to Crochetedcat]

Grew up in SD. Small farming town north of "The Corn Palace". ☺

Ron

[LynnO in reply to Hidden]

From Missouri, but I've been to The Corn palace! : )

LynnO

[Dadshelper in reply to LynnO]

Ok this is weird now.. I live in MO at the moment.

Ron

[LynnO in reply to Dadshelper]

I'm about 70 miles west of St. Louis.

Lynn

[Dadshelper in reply to LynnO]

we are very close then, I am slightly west of StL. I am just over the MO river....

Ron

[LynnO in reply to Dadshelper]

It is a small world. The more I talk to people the less rare this disease seems. A member at a church where I work was helping me with some Social Security questions for my husband, and found out her mother had PSP. There is a PSP support group at the Altenheim Senior Living Community on S. Broadway in St. Louis. They meet on the 4th Friday of the month. I've not gone, but am on their communication list. If you're interested I can send along the contact's email.

Lynn

[Dadshelper in reply to LynnO]

I have talked to the support ground leader. Dad won't go...

Ron

[LynnO in reply to Dadshelper]

My husband will not go either, and I am still able to work, so working on their meeting days. How old is your dad may I ask? sorry if you already mentioned this in a previous post.

[USA4]

My mom also has PSP. Diagnosed in 2013. We live in NY.

Deirdre

[Hidden]

Welcome to the site. Loads of good info here.

Ron

[Nanny857]

Welcome, I'm glad you found us, but sorry you had to. It is a great forum and you will get lots of information, advice and comfort from those who have experienced what you are going through, I know I have. Nanny857x

[connc]

I am new on here too. My husband was diagnosed with FTD about 2.5 years ago. He was recently diagnosed by 2 different neuroogists with PSP. I am in the Seattle, WA area.

[Tippyleaf]

Welcome to the site . Whilst thee are regional differences in the provision/ availability of care and support this site helps keep us on top of the challenges we all face regardless of location.

Xxx

[lolliepig]

Thank you all for the welcome.

[cinkerfoot]

Is there anybody in Northern CA?

[Christine47 in reply to cinkerfoot]

Have you looked at the CurePSP site? There is a link to all the support groups around the US. Some are meetings others are on-line. We are in So Cal.

[enzo501 in reply to cinkerfoot]

cinker,

San Francisco offers one of the best clinics ,with 5-10 neurologists on staff and a clinical trial "haven" for PSP,CBD,and other memory and motor skill impairments .I live in Littleton, Co and my wife has PSP ..We enrolled in a study the last 2 days and got back late last nite .If you want to please get back to me and I may be able to give you names and numbers to initiate info that may enlighten your perception of whats going on and some of the things on the horizon for this horrible disease .good luck ......jeff

[cinkerfoot in reply to enzo501]

I have been in contact with Reilly Devers at ucsf about their observational study but am also trying to get my mom enrolled in the Abbvie drug study there. They say she qualifies but it isn't up and running yet for the drug study.

Is your wife in both?

[Althea-c]

Welcome to the saddest site ever.

But there is comfort in knowing we are all going through the same hell. 💛🙏

[costner]

I am like you I am also from the USA and stumbled upon this site and it has been very useful information about this condition. Take care of my sister who is diagnosed 6 1/2 years ago and while she is showing signs of getting worse I still feel blessed that she has a lot of functions the people lose with this condition. Everyone here is very supportive and knowledgeable so welcome to our community