Pain with PSP

[mumnme]

I am feeling incredibly helpless as I witness this rapid decline. It's heartbreaking to see someone I love endure such torment. My mother's symptoms seem to be intensifying; she has unbearable pain in her arms, legs, and head, with her left arm locked at a right angle and one leg shaking uncontrollably. Her head feels heavy, and she struggles to hold it up. Her eyes are fixed, and she frequently complains of worsening dizziness. She prefers to eat alone in her room due to uncontrollable giggles that almost sound like crying, which makes her self-conscious in the dining room. The other night, she called me eight times within an hour, unable to articulate what she wanted to say, interrupted only by fits of giggles before hanging up.

I wonder if others have experienced similar symptoms and if there are any effective ways to alleviate some of this pain and discomfort associated with PSP. Any insights or shared experiences would be deeply appreciated.

[Jazzyjames]

I’m finding it very hard to watch the decline with my father. The once rock of our family is now in nappies, needs help to do most things and can’t articulate what he is thinking.

I can totally relate to the giggle sounds. My father does it all the time. At first it would make me angry because I thought he was laughing at me but I now see that it’s just a noise he now makes. He really struggles with swallowing, coughs a lot and makes random noises also.

Thank you for sharing and. I hope someone has some insights around the pain side of things.

[mumnme in reply to Jazzyjames]

Thank you

[Harshacceptance]

my dad has late stage CBD - on the pain side

- a neurophysio - worth every penny over the years to keep dad moving and alleviate some of his pain

- Botox - his neurologist prescribed courses of Botox in his arms / shoulders to ease the pain associated with stiffness

- pain medications are important and your GP / palliative consultant can help - there is a lot of neuropathic pain with these horrid diseases so need appropriate medications like gabapentim / pregabalin etc - outside of the normal pain meds these have helped dad to be more comfortable and sleep through the night

[mumnme in reply to Harshacceptance]

Thank you

[Tobias1234]

Dear mumnmeI am VV heartbroken for U....the symptons of deteriorating psp are dreadful.....HOWEVER...I AM A PALLIATIVE CARE NURSE...AND SUCH SYMPTOMS CAN BE ASSESSED BY LOCAL COMMUNITY PALLIATIVE CARE TEAM...try and get ur gp on board and urgent refer to local community pall team....the philosophy of deterioratibg neurological symptoms....are posdible to gain expert assessment and special meds can ve used to support deteriorating symptoms....keep goin...keep goin...

Best

[mumnme in reply to Tobias1234]

Thank you Tobias