Foundation for PSP | CBD and Related Brain Diseases

Richard · Joined: 06 Aug 2007 Posts: 186

Hi. My name is Richard. I have PSP, am married with 4 children (only one living at home now).

I am very happy to see this new addition for PSP and CBD patients. Hopefully we can talk, compare notes, etc.

Jeff and Doug are the only other two I know of. I am sure there are more like us out there.

Your posts would be helpful and appreciated.

Richard

Lorainemarie · Joined: 19 Apr 2005 Posts: 557 Location: Philadelphia, PA

Richard,
We have a newly diagnosed person on the general forum. Maybe you would like to send them a message about this forum.
-Loraine
http://forum.psp.org/viewtopic.php?t=7086
_________________
-Loraine

Mom: Marg-PSP-dx Aug'03-Died May'07 age 81.
Dad: Joe-Primary Progressive Aphasia with Frontal Temporal Dementia-dx Mar'06-Died Nov'06 age 84.

CAROLANDBOBS · Joined: 22 Jan 2008 Posts: 34

Hi!My name is Caroland I have PSP. I was diagnosed in Oct.,2007after about 5 years of symptoms.

Doug_F · Joined: 20 Apr 2009 Posts: 1 Location: Australia

G'Day Everyone.
My wife (Marlene) Was Diagnosed as a M.S.A.( Multi Systems Atrophy) Patient From 2005 up until 2008. She was then Re-diagnosed as a P.S.P. patient.
We are coping quite well and I take her for walks ( walking Frame on wheels,) every day plus have tried a few eye exercises. I took her to a speech therapist two weeks ago and have another appointment on Monday 27 April. It doesn't improve her speech very much BUT it is a very good ego booster for her. She really tries hard at her speaking and feels that she is doing something worth while.
Marlene is 60 years young and has, up 'till now enjoyed life to the full.
We returned home in Jan/2009 after 9 months and 24500 kilometers around Australia. She was never bored and was meeting different people everyday. Her specialist says that it was the tour that kept her mind so active. We will be leaving home again for another 3 months in June.I do all the house work etc and can cook fairly well so she does not go without anything.
I intend to keep her on the move until she can no longer travel. Then it will be a case of staying at home until ????
Doug_F Cool

Robin · Joined: 20 Feb 2004 Posts: 2602 Location: USA - Northern CA

Doug F,

That's some wonderful travelling you and your wife are doing! Sounds like you are personally responsible for keeping her quality of life so high for so long!

Can you indicate the name and affiliation of Marlene's neurologist in case there are others in Australia who need a recommendation? One of the world expert's in PSP is David Williams in Melbourne but yours is a big country so it's not always possible to travel to see him.

Robin

SGirona · Joined: 22 May 2009 Posts: 11 Location: Atlanta Ga

Hello,
I am new to this forum and trying to find my way around. I started on Facebook, hoping to find people who could exchange ideas about treatments and just about anything. That did not work so well, but somehow I found this site. I am not a patient, my mom who is 61 has PSP and has had it for the last 16 years. Can I post messages here or is this soley for Patients?

Thank you,
Sandra
_________________
Thank you,
SGirona

eplowman · Posted: Mon May 25, 2009 10:06 pm Post subject:

Sandra,

Let me suggest that you post your comments and queries over in the General Discussion section.

This section is primarily for communication among PSP patients themselves and their proxies.

When you repost over in General Discussion, I do have a question and comment re. what you said re. your mother.

ed p.
_________________
|My wife of 56 years was Rose b. 1930 dx 1999, symptoms from 1997; d. 06/21/08

SGirona · Joined: 22 May 2009 Posts: 11 Location: Atlanta Ga

Hi Ed,
thanks. I did that now and hope to get some replies. What is the question you have for me?

Thanks,
_________________
Thank you,
SGirona

mac5525 · Joined: 26 Jun 2010 Posts: 2 Location: Chicago, IL

I'm sorry to hear of your troubles.
I was just recently diagnosed w/ PSP, seven years after beng diagnosed w/Parkinson's (then atyical Parkinson's, then Parkinsonism.) As of now, all of my symptoms ( visual, speech, balance) remain vexing but mild. My biggest concern is with timing of "stages", that is, when to anticipate next exacebation of symptoms. ?????????

Robin · Joined: 20 Feb 2004 Posts: 2602 Location: USA - Northern CA

Having some idea of what to expect is particularly problematic in a case like yours that is "progressing" (ie, declining) so slowly and where the symptoms are mild. I've posted elsewhere about the 5 types of PSP. Perhaps you have one of the atypical types (there are 3 of those).

Diagnostic confirmation is only possible upon brain autopsy. Have you discussed this with your family and/or MD?

Robin · Joined: 20 Feb 2004 Posts: 2602 Location: USA - Northern CA

You can find the post on the 5 types of PSP by going to the search page:
http://forum.psp.org/search.php

Type in "five types PSP" and select ALL for the criteria that all the words must appear.

In the results list, you'll see a post with the title of "5 Types of PSP; Diagnostic challenges in PSP"

mac5525 · Joined: 26 Jun 2010 Posts: 2 Location: Chicago, IL

Much. Mike

abbuttercup55 · Joined: 07 Aug 2010 Posts: 5

hi everyone, it is nice to meet you. i am new to this forum and my mother was just diagnosed with having either psp or cbd yesterday. i want to try to have her lead as normal as a life as possible, and get her out there to enjoy her life. what do you guys have for suggestions? also, is cbd a slow degeneration of the body? she does not yet have difficulty swallowing or the rigidity that it talks about. any advice at all would be helpful, thanks a lot and i look foward to talking more to everyone!