Newly diagnosed

[Andyclairea1]

My father has just been told he likely had PSP. We know nothing at all about the condition so any info will be belpful please.

[Rockfly]

Really sorry to hear that your father may have psp. It can be really hard to diagnose so hopefully you get the right diagnosis so you can get the right help. The best thing to do is look on sights like NHS choice. It gives you a good overall explanation of what it is. PSP symptoms can vary quite widely and effect people differently so it is very much about taking each day as it comes and asking questions as things arise. What are your fathers symptoms so far?

[Andyclairea1 in reply to Rockfly]

Dad was diagnosed with alzheimers several years ago and more recently parkinsons. At his review with the parkinsons consultant today we were told its most likely PSP. Dad has been falling lots has difficulties with speach. He had increased saliva coughing when eating drinking. Memory issues apathy, can be bad tempered when he never was before. Issues with his eye.....prety much a lot of indicators to sugest PSP!!

[Tribey13]

Hi. Sorry to hear about your dad. It was a similar story with my dad. It all started when he fell down the stairs and ended up in hospital for a month. We did not know why he had fallen and he could never remember. Whilst he was in hospital with fractures he was placed on a stroke ward (it was Christmas 2004) as there was no room on the orthopaedic ward. Whilst dad was in this ward he was almost certainly given neurological drugs as we found he had the wrong name on his wrist band and the notes were for a stroke patient with a similar name. The hospital denied giving him any drugs but 3 months after the initial tremor and falls started. Dad began to fall backwards frequently and suffered badly with sore, watery eyes and swollen eye lids. The hospital initially diagnosed him with PD, however after 5 years he was finally diagnosed with PSP (the eye movement seemed to be the deciding factor).This will be dad's 10th year with PSP and I have to say he has followed progression of the disease to the letter.

Make sure you get full support from your GP and other health professionals such as the physiotherapists and occupational therapist as they can help advise you on exercises for your dad to do and also help with equipment. We have been lucky to have a lovely PD nurse as well (don't think there are any PSP nurse specialists) Speech and language therapists are also valuable assets to have although they weren't involved initially. Big handled utensils and slant sided bowls enabled my dad to be able to feed himself for quite a long while. If possible try to keep your dad as active as possible. We used to try and get dad out for a daily walk.

Look into NHS Continuing Care funding as well if your dad requires assistance with all of his daily needs of living (this is where the NHS pick up the cost for health/social needs). It can be a bit of a roller coaster ride to try and get funding and getting it can be difficult, but you can certainly request an assessment. My dad's community matron assisted with our application. There are other allowances as well if your dad isn't eligible for C. care such as attendance allowance. We found equipment very expensive so any help we were offered was gratefully received. Does your dad have a blue badge for the car? That would assist you with taking him out and is obviously lovely for him to get out. Registered disabled people are also exempt from vat on their equipment so it would be worth looking into that. I know it sounds like I'm banging on about money but before we had any assistance it was so expensive trying to buy things for dad which we thought would help.

Sorry I've written a novel but we've been there, done it, got the t-shirt, as it were!

Best wishes to you and your dad

Tribey13. Essex.

[Andyclairea1 in reply to Tribey13]

Thank you so much this is very helpful as we dont know a thing about this condition. Never heard about it until today. Any info and or advice is welcomed. Feeling rather overwhelmed at the minute!!!!!

[jillannf6]

Hi

I hsve PSP dxd dec 2010 Abd an still gerr upright midst of the tone except when I. Fall and vaby get up without help

[Andyclairea1 in reply to jillannf6]

So sorry u havevthis dreadfull illness. I hope u receive all of the support available. Andrea

[shasha]

BRILLIANT REPLY TRIBEY 13 THANKS

[Marykayrenaud]

First I am very sorry. Second, you will find this site helpful. Good luck

[Andyclairea1 in reply to Marykayrenaud]

Yes this site has been great already feel I know quite a bit about PSP.

[jimandsharynp]

Here are some great resources. curepsp.org and PSPA.org These are the USA and UK sites that are specific to PSP. You will find a wealth of information there and they will even send you materials about the disease that can help you explain it to other medical and non-medical people.

Jimbo

[Andyclairea1 in reply to jimandsharynp]

Thank u jim

[jimandsharynp]

Forgot to mention. If you are new to PSP be prepared to realize that you are in a spot that is unique, in some way, in EVERY patient. Some patients never face a symptom that others do. Some patients face a symptom early on, others much later. There are not set rules when dealing with PSP. Most patients are a bit unique/different in one way or another. Length of life is different in almost all patients. Be prepared to be a bit frustrated by this at times. Jimbo

[Andyclairea1]

Well had a visit to family gp today to talk about dad and thanks to this site I was prepared and probably knew more than the gp!!!!

[wifemo in reply to Andyclairea1]

Hi Andy -

You will become the "resident expert" - hope you can gather a good team around you of professionals who are prepared to listen.

Mo

[jimandsharynp]

Andy, Doesn't surprise me. Most of us have been there, done that.

[Andyclairea1]

1 week in and I feel abandoned! I asked gp for speach and language therapist as dad is not goung to be seen for another 3 months by the consultant! !!!!! They tell you this awful news and leave you to it,!!!!!

[jillannf6]

hi andyclairea 1

you will geT all sorts of help from thsi site form teh \PSP ASSoc itseff and from googling PSP

LOL jiLL