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d13 (@d13)

Primary Progressive Aphasia

Brain & Nervous System | Last Active: Jan 10 6:40pm | Replies (4)

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@hopeful33250

Hello @d13

I see that you are interested in learning more about this rare disorder. Here is a link to information from Mayo Clinic's website,
https://www.mayoclinic.org/diseases-conditions/primary-progressive-aphasia/symptoms-causes/syc-20350499
and
https://www.mayoclinic.org/diseases-conditions/corticobasal-degeneration/symptoms-causes/syc-20354767#:~:text=Corticobasal%20degeneration%20is%20a%20rare,brain%20structures%20that%20control%20movement.
In these links, you can also read about how Mayo Clinic cares for patients with this disorder.

On Mayo Connect, others have spoken of similar diagnoses. Here is a link to one of those discussions which may help you understand this better,
https://connect.mayoclinic.org/discussion/i-have-generalized-dystonia-and-hnpp-paraxial-vocal-cord-disorder-dysphagia-advanced/
The family's plan to go to Mayo Clinic sounds like a good one. Are they going to Mayo in order to be sure that the diagnosis is correct?

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Replies to "Hello @d13 I see that you are interested in learning more about this rare disorder. Here..."

Whoever put the go fund me page; said he expressed wanting to be able to be around longer with his grand children and family. I just read that he has had this disease for at least ten years and has a feeding tube and can’t speak. Has lost 60 pounds. He was seen by many neurologists. If he doesn’t have the primary progressive Aphasia; then it also stated that he might be diagnosed with having Corticobasal Degeneration. So I’m not sure as to the reason for going. It’s just sad to hear that he is going through this and the family. The Mayo Clinic sounds like they are giving him some kind of hope to at least extend his life.

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