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.
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.
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.).
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.
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:
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
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
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