Hello everyone. My dad is 75 and for the last 4 years we have been on the understanding that he had gait apraxia.
We saw a neurologist today who had been through his history over those years and has now diagnosed PSP-PAGF.
I'm scared for him and what the future holds, not just for him, but for us as a family.
He also has dementia, which I believe goes hand in hand with this?
Any tips, advice, anything would be gratefully received.
Rachel
welcome to this forum. You will find lots of useful advice here so do please search previous posts. You’ll see that we ask any and all sorts of questions and there will be someone who can help and has walked in your shoes before. Please do share here what care arrangements you have put in place and which health professionals you have been in contact with, so people can advise what else they have been able to sort.
Hi Pickle
Although each sub type of PSP present early symptoms differently eventually they start merging. What other symptoms other than freezing of gait did the nuerologist think it was PSP rather than his original diagnosis.? I googled the pheno type and it is a slower progression phenotype so hopefully your dad is still able to talk. If he can talk record his voice as that is now what I wish I had done as my husband cannot speak to me any more. My recommendation would be to scroll through the posts on here. PSP is relentless so it’s very demanding on the carers as well as the sufferer. Reach out to PSPA website and read masses of valuable information on accessing support. They have a telephone line support service too to answer questions and give advice. They run zoom meetings too, provide exercise zoom classes and counselling services. Try and find a GP at your local surgery as a dedicated point of contact for referrals to the various specialists your dad may need at the disease progresses. Often other medical staff are unaware of PSP so you need to become an expert yourself to explain things to doctors, hospital staff etc so again the PSPA website is a brilliant source of information as well as this forum.
I posted a little while back about a poetry book about PSP. I know this sounds weird, but through this collection of poems, the author creates a touching portrait of this disease, which is comforting to those of us who are caregivers. It also contains lots of information about the symptoms in layman's terms. It is called Hummingbird - Poetry on PSP & Parkinson's, available in paperback on Amazon.
I have this poetry book too. It gives, as you say, a really touching yet informative look at the world of PSP for those affected by it. It is like a journey through the different emotions felt by the challenges PSP throws at us.
When OCD and PSP collide.
PSP - Are any two cases alike?
