where do I go….

[AvonJane]

Hi, my mam was diagnosed with PSP Feb 14th this year, the consultant thinks she may have had it for about 5 years., she chokes at least twice a day and coughs frequently, her mobility is getting worse, she walks with a walker. we have had 1 visit from the SALT team, they said she is better than she thinks 😡😡. We had a package delivered yesterday full of Parkinson’s info, from the Parkinson’s nurse, am I missing something, she doesn’t have Parkinson’s and the letter from the consultant explained, fully her diagnosis, I’m feeling very frustrated, is it me…. I dont know where to go for help from the medical professionals.

[Joluu]

Hi so sorry about your mum's diagnosis my mum's had psp for 10 years. I'm afraid your experiences are common as there is very little knowledge out there about psp and the confusion with Parkinson's disease is also common. Sorry to be blunt but you will probably need to educate yourself and then educate the professionals involved in your mum's care. I would suggest ringing PSPA and getting lots of info from them. They have guides for gps etc that you can then pass on.This forum is also a great way to get info and support.

Sending hugs

[Hummingbird_]

My heart goes out to you  AvonJane ... sadly it's a very common scenario as there aren't really that many people who 'specialize' in PSP.

My suggestion would be to contact the  pspa-helpline to at least get registered with them if you haven't already done so. It's worth contacting the Neurology department to ask for PSP specific information (they may or may not have any depending which Hospital Trust you come under).

Your GP can arrange referrals for SLT/OT/Dietician/Physio/Continence Nurse/District Nurses - you may not need all of them but it's worth knowing where to go to if you should need them, especially if you want to apply for CHC (Free funding for care! Although it's really hard to claim)

 PSPA have a dedicated Helpline, they also have 'Local Groups' (some not so local unfortunately) and online groups. There are also several reputable online 'chat' groups (Facebook) dedicated to PSP/CBD ... please not these are not run by professionals, just a group of people who are in/or have been in a similar situation.

Sorry I can't be of more help to you. Sending love and strength.

Hummingbird

[Zerachiel]

Hi, Although Parkinson's is different a lot of the issues associated with Parkinson's are the same as PSP so don't dismiss them completely. We visit a parkinson's support group and have found lots of information to help us.The Parkinson's nurse are a good form of support and liase with the consultant.

[Kelmisty]

My Mum was diagnosed privately last October, then by nhs in the November.

The SALT were not great, gave mum exercises and discharged her until things become worse. She’s almost five years in too now.

Other services we have on board through asking the GP to refer, are occupational health & physiotherapist - neurological and dietician.

I also contacted my local hospice for help, they have been great with supporting me as her main carer for securing funding, blue badges etc.

Parkinsons nurses are badly named as they are actually neurological nurses. There are similarities across all of these neurological conditions hence I think sometimes they give you information from them.

I would also contact PSPA.org they are the uk charity with a huge amount of information.

Unfortunately I will say, as your mum has this diagnosis most appointments just involve advice and see how you goes. As hard as it is to accept there isn’t a huge amount of things they can try but any medication would be led by the consultant.

[Julieandrog]

HiAlong with all the suggested professionals refer mum to your local social services, they are invaluable in the logistics of arranging care and giving info re funding. With this vile illness try not to crisis manage, be prepared the only certainty is the progression. Hold her tight.x

[bazooka111]

Hello AvonJane - I browse this forum off and on, as I grieve the passing of my sweet Momma from this diagnosis. What you are describing, is exactly what I went thru in early diagnosis. Our Neurologist at the Cleveland Clinic described PSP/ CBD as a very distant cousin to Parkinson’s Disease. My mom started thinking she had a stroke —- her handwriting changed - she had a hard time finding the word she wanted say, and she started falling backwards. Mom was diagnosed in May 2017, started showing signs in 2015 and she passed away December 2022.

Coughing, choking, swallowing continued to decline and her mobility slowly faded. If she is still able to talk - record conversations! Best thing I ever did -

I cared for her in my home —- I am here if you ever need a shoulder or a listening ear.