Progressive Supranuclear Palsy PSP

[WorriedAboutMom]

DM (60) was originally diagnosed with Parkinson's 4 years ago but her symptoms had worsened rapidly in that time. Today her Neurologist has said that she actually has Progressive Supranuclear Palsy (PSP) which gives an average life expectancy between 6 to 7 years from when the symptoms start. However her main symptoms started 4 years ago as mentioned so we are looking at an average of another 2 to 3 years. My family are really struggling with this news and are really numb about what is the best thing to do going forwards.
Has anyone here had a relative with this condition and I apologise for me asking this but how long was it until the end from the date of diagnosis? She is already having sudden falls daily and is wheelchair bound now. DF is her carer but has been told she needs someone by her side 24/7 so he is also more or less housebound now.
I have 3 DC under 5 and I'm scared they may not remember their Nan in the future . I also don't know what is the best thing to do for her as her DD in this situation.

Sorry to hear about your mother. That must be a shock to you all.

There is a PSP association. Do give then a call they will be able to give you advice and support.

@WorriedAboutMom, I am sorry about your Mom's diagnosis, she is so young to have it. My dad has it, he is much older than your mum, he is 80, but was always been incredibly fit and looked 15 years younger than he was. He was also misdiagnosed as Parkinsons initially, apparently that is typical, he has now been diagnosed with PSP for about 1 year. It is a horrible, horrible illness.

What we find is that my dads progression will plateau for a few weeks or months and then there will be a significant decline. There will also be days where he is really good. He is now in a wheelchair fulltime, has his liquids thickened and his speech is getting progressively worse, we have a daily full time carer for him, plus family members fill in.

There is a very active facebook page called Progressive Supranuclear Palsy, it has about 5,000 members, maybe you might consider joining that; there is a huge amount of information there. Again, I am so sorry your Mom and your family have had this awful diagnosis.

Thank you SF1269 for sharing that and I'm so sorry to hear how dramatically it's changed your dad's health. The rate at which PSP detetiorates a sufferer's condition is just shocking. DM has had issues swallowing. You just feel hopeless as there's literally nothing you can do to 'make it better' except make life as comfortable as possible. I think I'll be taking videos and photos when DM and DC are together for memories.
DM used to just put on a brave face when we used to go round hers but it's got to the point where she's lost hope trying to fight a losing battle and it's so hard to see.
Thank you also unicornsarereal72 for that information, I will contact the PSP Association for advice.

Couldn’t read this and not answer. My dsis 60 was diagnosed with PSP 2.5 years ago. Previously she was diagnosed with Parkinson’s as a large number of PSP sufferers are.

Absolutely contact the PSP association. My dsis has a social worker and OT. She’s been provided with an electric bed and pressure relieving mattress. A hoist. Wheelchair.

Make sure your dm applies for PIP. My dsis was awarded lower rate, but on appeal was given higher rate and motobility. They are getting a WAV tomorrow - wheelchair accessible vehicle.

My dsis gets carers 4 times a day. This is funded by the nhs - her OT sorted that out for her. My bil gets a bit of respite from me going down and sitting with my dsis, but I live a 90 mile round journey so only manage once or twice a week.

There are PSP specialist nurses. Next time your dm sees her consultant ask about seeing one. They can spearhead you into getting the help/care your dm needs.

Hope this helps.

Hello there, late to see this I know but wanted to reply as my Mum also has this condition (diagnosed last year). She is 71 and has lost most mobility and has cognitive issues. Very hard - as pp say, PSP Association are brilliant as are our local hospice. Lots of adaptations and carers mean she is still at home atm but not for long now as she is falling regularly. Do feel free to pm if you want to chat more. Love to all the families dealing with this little known illness.