Newly Diagnosed-want tro contact someone with PSP like me

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Newly Diagnosed-want tro contact someone with PSP like me

Postby lorrainemcl » Fri Jun 19, 2009 8:27 am

Hello, my name is Lorraine, I am 53 years old, female and have recently been diagnosed with PSP. I would like to be in contact with others in my situation, It would be very helpful to me to be able to talk with someone who is going through what I am, I have had symptoms for nore than two years (initially loss of balance, and increasingly others including vision, swallowing, and speech difficulties). I have stopped working and driving and I feel that I am getting worse. I am concerned about the future, especilly what sort of care is going to be required, how nuch it is going to cost, and the burdens this is expected to place on my family. Thank you.
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Postby Robin » Fri Jun 19, 2009 9:55 am

Hi Lorraine,

Sorry you've had to join us here. There are a few others here who are PSP (or CBD) patients.

I think there's a support group in San Antonio. Meetings may be for caregivers but the group leader can still put you in contact with others. Check

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Postby eplowman » Sat Jun 20, 2009 12:34 am


You are a very brave and considerate person. I regret very much that you have been diagnosed with PSP -- and at such a young age.

We have others with PSP who are here, but most cannot communicate without the help of family members or other caregivers. Hopefully, someone can converse with you.

So that those who are here can understand and know and perhaps help you better, can you tell us a little bit about your living situation. Are you living with other family members or do you live alone? Do you have anyone there who can assist you at all times to help prevent you from falling? Must you use stairs to go from your bedroom to other rooms in your home? Must you use stairs to go outside?

Also, if you wish to tell us: what was your main occupation during your work years?

ed p.
|My wife of 56 years was Rose b. 1930, dx 1999, symptoms from 1997; d. 06/21/08; PSP-rs autopsy confirmed.
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Hope you have a good day

Postby robertvalerie » Thu Jul 23, 2009 1:52 pm

:D I also have just been diagnosed with PSP, and am having a hard time with emotional incontinence. It's a shame that we have to meet under such circumstances
I hope you have a good day
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Postby brunobelo » Mon Aug 01, 2011 4:37 pm

Hello Loraine, I am sorry you were diagnosed with this disease. You are not alone. I was diagnosed in 2008. My speach was my first symptom, for several years prior. My balance has been gradually worse with increased falls. My vertical eye movement has also been greatly affected. I don't know what else to expect, but i try to hold my head up and keep going day to day. I do still drive , but I miss pulling up to a drive thu and ordering myself an iced coffee. What medication do they have you on?
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Joined: Fri Apr 04, 2008 2:59 am
Location: Boston MA

Re: Newly Diagnosed-want tro contact someone with PSP like m

Postby hamcghee » Mon May 07, 2012 11:30 am

Hi Lorraine.

I am so sorry your are dealing with this dreaded disease. My mom is 59 years old and recently diagnosed as well. Her first symptom was unexplained falls, followed by a change in handwriting, vision problems and choking. All of her symptoms have gradually gotten worse over the years, and most recently her speech has deteriorated to a slurry mumble. She does not have any dexterity in her fingers, so typing is difficult/impossible, but I'd be more than happy to sit down with her at the computer and respond to a message or email from you. (Please feel free to email me directly She is one of the younger cases of PSP as well. Her symptoms started in about 2005 but she was just diagnosed this past December. She in the more advanced stages at this point, residing in assisted living and using a wheelchair - but her mind is still intact.

Wishing you all the best! ~Heather (Daughter of Jennifer - PSP age 59)
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Re: Newly Diagnosed-want tro contact someone with PSP like m

Postby Robin » Mon Jun 11, 2012 6:45 pm

You may have to send your post via email to Lorraine directly. I haven't seen her post here in a long time.
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