Mom with PSP in PA & helpful book

[EmilyRD]

Hi All

I have been reading your posts for awhile and they have been so helpful. We are in the US and it seems that no one knows what PSP is here. The Pennsylvania hospice didn’t even have a code for it until a few months ago. It seems many people were likely filed under Parkinson’s.

Does anyone know of any support groups or PSP specific resources in the USA east coast area?

I wanted to share a book with you all that has been helpful. This is a personal account of a woman documenting her mother’s battle with PSP. It’s beautifully written and has been a guide for our family.

Killing Mother: Progressive Supranuclear Palsy amazon.com/dp/1976975883/re...

[Hidden]

Sorry your mom is going through this.

Larry and I are in Philadelphia, PA. This is the only site I found anywhere of any value for information and support.

[EmilyRD in reply to Hidden]

Thanks, Jeff! My mom's nuero is at Jefferson Memorial. The doctors are vague at best (which I understand the symptoms are hard to pinpoint). I'm grateful to have found this site.

[EmilyRD in reply to EmilyRD]

One question- would you be able to possibly recommend a speech therapist in the general area that would have some knowledge of PSP?

[Hidden in reply to EmilyRD]

Larry was seeing Meredith Pauly at the Penn Neurology building at 330 South 9th Street Philadelphia pa.

[EmilyRD in reply to Hidden]

Thank you

[Kevin_1]

Hi Emily

Welcome to the forum - Sorry you need to be here.

Yes many countries are still patchy with regard to PSP knowledge. I do hope you have a sussed neurologist. Some parts of the States are right up there at the cutting edge.

I will leave it to your fellows in the U.S. to give you leads. They will know better than I (I'm in the U.K.).

Whilst you wait you could check out psp.org/.

And the U.K. PSP Association is a pretty good source for info on the illness and its management.

Thanks for the link for the book and the recommendation.

I'll take a look.

Wishing you both the best.

Kevin

[EmilyRD in reply to Kevin_1]

Thanks, Kevin, I will!

[Benny22lovesus]

Hi Emily , we live in Texas. My husband has PBP , I've never heard of PSP. There is so many types of this dreadful disease.. Welcome to this forum .

[teresa1988]

Hi Emily,

My husband has PSP. We live in Georgia. We are fortunate in that he is being seen by a movement disorder specialist who had a high index of suspicion for the condition and knew the physical findings to look for and the questions to ask of us.....my husband was initially diagnosed with PD by a general neurologist.

If you haven't already, visit curepsp.org website. They will send you a packet of information that will include a listing of support groups in the US.

Thank you for your link to the book.

Take care.

Teresa

[EmilyRD in reply to teresa1988]

Thank you, Teresa! I will do that.

[rriddle]

Emily,

Funny - someone just came to our local PSP support group meeting last weekend (we are in the San Francisco Bay Area) and said that "Killing Mother" was the WORST book ever - very depressing! To each his own, I suppose.

There used to be a PSP support group at UPenn. I assume it is still running. And there's a group in Youngwood, PA.

There are also online support groups and webinar-based groups:

brainsupportnetwork.org/sup...

Robin

[EmilyRD in reply to rriddle]

Cool? Just trying to help and share what has helped my family.

[GeriV]

Hi Emily

I am the caregiver for my mother. She is diagnosed with CBD/CBS. It shares many of the PSP symptoms but starts asymetrical. We live in Rehoboth Beach, Delaware. She moved in with me February 14th and could use all the suggestions we can get. And definitely a support group. We could always look into Skype or facetime or alexa "drop in" to form a support group. Easier than getting in a car some days! Lol

[Artteach10]

I am in Nebraska and the best support is right here on healthunlocked. You are so right that know one has heard of PSP. I feel like I have to explain to everyone so it is comforting to have caring people here. My husband was finally diagnosed in January after they thought he had Parkinson. Nancy