End stages of PSP

[anniesfirst]

Because it took so long for Mom to get a diagnosis of PSP, we can only guess how long she has suffered with it. Her symptoms of visual problems and feeling "dizzy" started as early as 2017. She subsequently over the years began falling, usually backwards, and started slurring her speech. She was treated for a myriad of things which, of course, failed to change anything. Mom even fell hard enough to have a brain bleed treated by a craniotomy. This was followed by multiple in-patient and outpatient rehabilitions that included doctors, neurologists, physical therapists, occupational therapists, speech therapists and more. None of these professionals even suggested PSP as a cause for her symptoms.

It was our local eye doctor who, after thorough exams, admitted that he could not identify the problem and referred Mom to a nerological opthamologist. Within the hour of that visit we had our diagnosis of PSP.

Mom is a tough gal. She is now 90 and is in what we believe to be her sixth year of PSP. She uses a wheelchair, she is still eating most foods with some difficulty both feeding herself and swallowing, but she can barely speak any intelligible words. Her vision is terrible. For a once extremely active person, Mom's life has been reduced to a very small world with almost no engaging activity. We, her children, see her daily, but for her and for us witnessing her decline, this is becoming unbearable.

If any of you have stories about the end stages of PSP, the expectations and such. I would welcome hearing from you.

[OllieFisher1]

My father seems similar to your description, although he cannot feed himself 90% of the time. He struggles to communicate the most basic things with respect to finding the words. This has conintued for nearly a year, so its about comfort and safety. There is not much you can do, so invest in quality time with her rather than trying to fix everything which is what I did initially.

[LuisRodicioRodicio]

Hi anniesfirst!

I am sorry for the difficult situation you are going through.

By internal mail I have sent you the information and experiences that I have.

Hug and courage.

Luis

[wear1947]

Hi Annie, this not yet the last step of PSP. Urgent, look for a good phonoaudiologist this will help your mum to feel more comfortable. For the vision problem, only botox help for a limited time (3 years).

My sister is 79, She has PSP-P, diagnosis since 2018 but, but she began in 2008

Ask Luis Rodizio on the 5-6 different types of PSP. Ask at PSA for es specialized phonoaudiologist

Knowing what happens and what is the future helps.

Big hug!!!

[Walking18]

This is almost a mirror image of how my mum started and how she has progressed ( I had to swipe up to see if it was one of my posts when I first started reading it )

Her speech is almost gone and the words she does try and get out don’t make sense. When I visit she’s usually ok for the first hour then spends the remainder of the visit making awful wailing sounds which although frustrating for her I find upsetting.

We have tried using a letter chart in the earlier days but now she doesn’t seem to be able to point to the letters to spell out the words. She’s still eating normal diet but seems to be having choking episodes more frequently.

She use to enjoy doing jigsaws on her iPad but no longer does that - she just sits in her recliner playing with the remote ( it has to be switched off when we aren’t there as she’s been found as high as the chair will go and nearly tipped out 🙈)

I would love to spend some quality time with her but like I say most of the visit is spent with her making a loud wailing crying noise which just ends making the visit upsetting

[anniesfirst]

Thank you so much for your response. We have had the same experiences with dwindling activities. Mom stopped using the IPAD and the letter board. She also resorts to loud wailing when upset and frustrated. It is nerve rattling. Understanding that she is frustrated but also not helpful in trying to help or communicate with her about her needs.

Feeling your pain.