what can i do for my mom?

[namssang]

hi, at first, i do not speak english as my native language. i live in south korea. so, i'm hopeful for your understanding.

my mom is suffered gait disturbance, balance, slurred speech, lower limb weakness, ...so, i think that my mom is early stage PSP. recently, sometimes, she complained difficult in eyelid opening.

i research a few clinical trial for PSP. i found salsalate, LMTX, nilotinib...etc

i have questions to someone that tried or trying these drug.

how about the results, complication,...

thank you

[easterncedar]

Welcome, namssang. I'm sorry for your mother's condition; she has all the basic symptoms of psp except for choking. We have no experience with any of the drug trials, so I can't help you there, although my understanding is that there has not been anything that is proven to help - yet. We all are hoping for that breakthrough. I'm sure if anyone here has information you will get a more useful response soon. For what it is worth, our neurologist, Dr. Apatauerova of the Lahey Clinic outside of Boston, recommended high doses of CoQ10, up to 2,400 mgs per day. We used it at various levels for about four years, and it may have slowed the progression, as she believed it might. My guy had a couple of long periods with little or no deterioration in that time. It at least gave us something to be hopeful about, and that was worth something. Now, 5 years after diagnosis, we are treating symptoms only.

If you search posts by Christine47 and ketchupman you will find much more useful information. Best wishes to you and your family, Easterncedar

[namssang in reply to easterncedar]

thank you for your reply. i will consider coq10, also. thanks

[abirke]

I hope that first you get a diagnosis before you try drugs. However your description of your mom sounds very familiar and my husband does have a diagnosis of PSP. Do you have a good medical facility? Granted the best medical facility is you....because you care you spend every day with the symptoms and you are constantly studying up on the symptoms. I just read easterncedar's post. We used C0Q10, Not as regimented as they did, but we did have some slowing of the process but I wasn't really sure that it was this supplement/ and asa I tried this and that drug on B, C0Q10 was sort of given up as well.

Again get a diagnosis so that you can make sure it's not soemthing else. then knowing where your mom is, she and her Dr and you can consider using drugs they found to work in a few trials...Or maybe she can BE in a trial!

I hope you find a diagnosis to your moms issues

AVB