possible PSP for my mama

[Sept9]

hi guys. I'm new here. My mom is 69. The last 3 years she has been falling and falling. Probably every 3rd day she would fall and always backwards on her booty. She would complain of dizziness. She holds her eyes really open wide and can't look down easily. She was really mean at first but now just laughs a lot and seems very spacey. She talks but its slow and monotone, which it has been for a couple of years now. She coughs and chokes with all meals and drinks. In April she fell very badly broke her humerus. They want to do a nerve study and surgery because her hand still isn't working. We dont know if worth putting her through that. She has gotten much worse and can't walk well at all. The neurologist said psp but that she specializes in ms so she give the final diagnosis. Of course the neurologist who she was scheduled to see next Monday just her appt to December. I'm calling them to move it up. I feel she's close to stage 3 based on what I've read. Do you agree with that? or would this be stage 3? I know everyone has different experiences but just trying to figure out where we are with this. Its horrible just watching her body freeze up.

[Hidden]

Hi! It sounds like PSP . My husband has this horrible disease. He is still a little mobile with his rollator. If not for that he couldn’t walk. I use a wheel chair when we go out. As for stages, I’m not sure because everyone is different. My husband is almost 69 years old. This started happening to him probably 6 years ago. He started falling backwards. Then he started to not remember how to do things he’s always done. That has gotten worse and worse. He has not driven in prob 5 years now. He can just set. It’s awful! He gets so tired and bored. He sleeps most of the day or sets with his eyes closed. Light hurts his eyes really bad. He too gets choked very often, even on his own slobbers. I pray he doesn’t become totally immobile, but talking to most on here and reading, they normally do. I pray every day for a miracle, this is an awful condition/ disease to have. His memory is better than mine at times. He just can’t remember how to do things he’s always done. Prayers for you and your mom, I’m learning as I go. I read on internet a lot on the condition, that has helped me more than anything. The neurologist really hasn’t told us anything to do to help. His dr has helped more than neurologist has. Prayers and best wishes.

[lakka]

Hi It sounds like it and my spirit with you and siblings. My mom assed away in 2019 after many years of PSP. The falling backwards is how it began. She complained of not feeling good in the head - sometimes dizziness - but the choking didnt happen for a couple of years. It took multiple years to get to the total body failure. What we attempted to do which I recommend is to organize speech therapy, yoga and other light muscular activities - to rewire the neurons to slow down progress. While improvements were questionable it was also a ritual she looked forward to, getting therapists involved may help in social engagement.

[LuisRodicioRodicio]

Hi Sept9!

I'm sorry PSP/CBD/ etc. has entered your family.

Despite having an effective, efficient and gentle GP, the necessary scheduling of visits to his office or to the emergency hospital, the necessary displacement, always complicated, the "roller coaster" of more or less banal symptoms that PSP generates, many of them unforeseen and repetitive, led us to a certain experience that, together with the possibility of consulting by telephone with some medical friends and family at any time, allowed us to alleviate the symptoms quickly until hours or days later we could consult with our GP.

The suggestions of my "chat" colleagues are wise and based on their different experiences. In my case they have been very helpful.

These kind of diseases manifests theyself in a similar but different way in each patient. The participants in chats like this offer practices and solutions to learn from, and through the support of a GP and the "trial and error" method, you could achieve a quality of life with interesting moments despite everything.

I am not a phisicyan.

During the 8,5 years in which we was living with PSP I have been collecting our own experiences, symptoms and solutions and that of other members of the chat to offer some notes as a suggestion to PSP/CBD patients and caregivers. The mentioned notes are made with good will and with the best technical criteria that I could contribute, thinking above all in the support of the caregivers

Wishing the best for you and your family and if the those notes-document with our experiences and our informations are of your interest, do not hesitate to let me know to send it by the private mail of this chat.

Hug and luck.

Luis

Note.-The aforementioned documents include some photographs in "jpeg" or "Excel" charts that the PSPA private chat does not support and are canceled in the copy that I include in the private chat. In that case, if of interest (pictograms and communication boxes, the description of symptoms of the different types of PSP et cetera) the only solution is to send it by email to a "gmail" or similar email address.

[LuisRodicioRodicio]

Hi Sept9 again!

All PSP patients seem to have similar symptoms but their appearance, intensity and sequence seems to be specific to each patient.

These are our experiences on PSP-RS disease and also the experiences of other caregivers expecting they could be useful for others:

First: If physicians agree that there is suspicion of a Parkinson disease (PD) or Parkinson-like neurological disease (PSP-RS, PSP-CBD, PSP-P etc.), then I suggest to start an intensive and systematic exercise program including walking, up and down stairs, speech therapy, etc. as soon as possible, trying to slow down eventual muscle dysfunction. The idea is that the more one uses their muscles the longer they are able to use them. PSP usually affects more on one side of the body than on the other. Logically the disease will progress and the type of gymnastic exercises should adapt and necessarily reduce its intensity.

One easy activity is to go to the pool and walk back and forth across the shallow end of the pool - forwards, backwards, sideways. It really help for a while. It won't work forever, but it'll work for a while. To have one to one hydrotherapy with a neuro-physiotherapist may be a good idea.

This link could help:

On august 2021 PSPA launched an interesting information about systematic exercises: “Tips for staying with PSP&CBD”.

pspassociation.org.uk/app/u...

Hug, luck and courage!.

Luis

[Dorothysdaughter]

Hi,My

Mom passed away from PSP in Dec 2020. She had the disease for 7 years from diagnosis. She didn’t get to stage three for about 5 years, where she could no longer walk at all, no longer talk understandably, and we had to be very careful w food. She didn’t loose her incontinence or ability to eat until literally 1 week before she passed. We opted for no feeding tube. We had a great neurologist at Jefferson Hospital in Philadelphia who was extremely familiar with the disorder. While that helped, it was always a new thing every day. She had great care and loved w joy for many years despite this horrible disease. I hope this helps. The best site I found for stages was a caregivers site for PSP. I referred to it often.

[agustintp]

Hi Sep9, My mom began same like yours and everything was very very slow.

So please take care and a lot of encouragement.

Best wishes from the south of Spain.