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Primary Progressive Aphasia
A rare and tragic disease with no cure. Causes brain deteriorating loss of speech and inability to swallow. Tremors and weight loss. Also might be diagnosed with having; Corticobasal Degeneration; where the brain shrinks and nerve cells die over time. It’s a terminal disease. This post I came across on my FB page. Just so happens I grew up knowing this family in the town I’m from. Although he is younger than me. He’s probably in his mid sixties. The family has set up a fund me page for him to get to the Mayo Clinic in Scottsdale Arizona. The information page I read didn’t mention how he got this disease or if doctors even know how one gets it. Wondering if I could get some feed back on this subject?
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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-20350499and
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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2 ReactionsWhoever 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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It sounds like the family wants to do everything they can to help him. As you learn more about this, will you post updates?
I’m going to talk to one of my sisters that lives in the area still. Maybe she has also heard something about his diagnosis. When I hear or see another post with something definite, I’ll post update.
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