Give as much support as you can. More rare diseases that have no cure.

[Outrigger]

Since my sister was diagnosed with P.S.P. I have been reading as much as I can about it. They first diagnosed her with Parkinson's disease but a specialist found it to be P.S.P. She wanted the guide book on P.S.P. so she could read about it. Now she is depressed and still in the nursing home by herself. I am going across the country to see her and check up on her with my older sister.

My brother does the ancestry.com and came across a hereditary rare disease in my father's side of the family. It has many of the same symptoms as P.S.P. it is called spin ocerebellar axaxia 36 and there are different numbers? Well, it is interesting but it too has no cure. I never heard of any of theses diseases before my sister got sick. Well, what do you do? I'm going to ask the doctor about it. I just thought I would share so may surprises as you read though the information wish it was good news.

[Hidden]

I also found out about lots of rare neurological diseases with no cures since Larry’s diagnosis. Even the PSP diagnosis isn’t a sure thing until a brain biopsy is done. Your sister may have another disease entirely.

[easterncedar]

You made me curious, so I looked it up. Not something to worry about, I suppose. Ancestry.com isn't always helpful!

Epidemiology

The prevalence is unknown. SCA36 has been described in at least 14 Japanese and Spanish families in approximately 90 individuals.

[Outrigger in reply to easterncedar]

Yes, I did look it up and there are a variety of numbers. It's just interesting because it is supposed to be inherited, but we are not Japanese or Spanish so maybe that distant relative got it from the other side of her family?

[ehardey]

My mother has PSP and her father was thought to have some disease similar to ALS (which of course we all know what that is) - they never find out what exactly it was though.

Additionally, my mother’s cousin has a neurological disorder, but I forgot the name.

My mom was first diagnosed with PLS (primary lateral sclerosis) which is another rare neurological disease very similar to PSP but closer to ALS.

Her biggest fears were always that her disease was hereditary and me or my sisters may get it later in life like she did. I hope and pray to God that this doesn’t happen and that it isn’t passed down to me or my sisters’ children, but it’s impossible to say with the little research done.

I am always fearful of the future and what it brings. As I read more and more posts, it seems that these neuro diseases are hereditary which is incredibly troubling.

Best wishes to you and anyone affected by these diseases. It’s so hard to deal with and I wish it on no one.

All we can do is be there for our loved ones and remind them how much we love them and talk about the good times with them - recalling memories always makes my mom smile even if she can’t contribute to the story much.