Progressive subranuclear palsy

[Spottyparrot99]

Hi, has anyone had a friend/ family member/ patient with this? My dad is suffering. He can no longer speak, blink, swallow ( has peg feed) focus or move gaze. He cannot move much except for a thumbs up/ down signal which is how we try to communicate. He chokes on his own secretions a lot. He is in pain- we try to keep it under control for him- but is hard when communication is so limited. We believe his cognitive ability is still there. But again- how'd you really know for sure? He sleeps a lot.
I would really appreciate speaking to some one who knows something of this disease. I know he won't get better. I know. But I want to know what might happen next. I don't want to loose him- but I don't want him to suffer either.

I had never heard of this condition until I treated a partent (I'm a HCP) and her DH gave me a leaflet to look through.
From what I gather, it is rare and often mis-diagnosed as Parkinsons.

Worryingly on a personal level, my DM has been diagnosed with Parkinsons a couple of years ago, but her eyes are affected (she sort of stares, can't focus, she says its like being 'drunk' though she's never had alcohol in her life ) and is becoming less mobile. Sleeps all the time. Bowel/bladder issues. (A lot of these are Parkinson symptoms though)
I need to research a bit and give her the details to take to her GP , if only to rule out/find out.

I don't want to hi-jack your thread though.
Theres a PSPA website and helpline number 0300 0110 122

When was your Dad diagnosed? What treatment plan was put in place for him (I'm thinking pain management as this sounds like the main concern for you regarding his daily care. Very difficult as you say f he cannot communicate well with you )

I'm so sorry to hear about your dad. My (much beloved) Gran had this. It's a horrible disease and I remember all the symptoms you describe.

I'm afraid I can't help you much on the medical detail of what happens next as it was a long time ago. But I think what happens is that the palsy begins to affect the respiratory system and people who suffer from it need to be made comfortable for the end. My Gran died in a hospice.

Random fact - Dudley Moore had it and you might find some more detail in some articles about him and the condition. I remember it got some publicity at the time.

Are you talking to your dad's doctors about what happens next? He'll need specialist care and they should be talking you through what happens.

Thanks you 70 and rain.

My dad was diagnosed in 2014- but they diagnosed Parkinson's before that in 2012. However, he never had a tremor and the drugs had not efffect on his symptoms so he had more Investigations and they decided on
Psp.

I think he had symptoms since 2007/8 small handwritting, occasional
Balance loss, stiffness etc. However I understand a definite diagnosis can only be made upon brain post motem examination. He has agreed to donate his brain. My
Mother is distraught that this might happen.

I sincerely hope your mother doesn't receive a psp diagnosis. I know Parkinson's is no fun either- but psp just seems so helpless with no treatment or drugs to help.

Dad attends a hospice once a week. I guess he would go there.

His breathing is bad- you can hear the bubbling. It sounds wet. He has choking coughing fits. He has a mouth full of rotten teeth (life long dentist phobia) but has so far escaped chest infections.

He has never discussed end of life care. He has never been comfortable discussing death. I know no one likes to talk about it- but, for example he never once mentioned my daughter who died
At birth in 2011. He just isn't
Comfortable with it.

I guess I want the answer to the impossible. How long does
He have? Will he continue to suffer? Will he get worse? How can I help? Maybe I just wanted to reach out to someone who knew what we are going through. So thank you for reaching out to me with your replies.