Where do I start…….
I cannot believe this network exists and how I wasn’t provided this information.
Diagnosed in July 2021 and like most battled with the complete unknowns.
Loads more to say but keen to just read and see what this network provides. My dad recently went into hospital following a fall and is currently stuck there until a better care plan is in place. That’s where we are at……..
Total nightmare world
Sorry to hear that PSP has moved in with your family; glad you have found this network which can be so helpful both for practical advice and as an "outlet" for all the emotional baggage that the disease travels with. In your current situation - "never waste a good crisis". Hospitalisation is never a good thing however it may help speed up access to some of the necessary services, please make sure he gets all that he needs.
My husband broke his heel in a fall around 15 months after his PSP diagnosis, and spent the weekend in a ward that was in no way set up to look after someone with PSP. It was sad to see.
In our case we suddenly had both NHS occupational therapist and Social Care lined up to see us as long as they could send him home with me to care for him. In hindsight we should have asked for far more help before letting him be discharged.
It should be a good thing that we have managed and adapted for each turn and twist in the road. It seems I now need to do a lot of phone calls and cry down the phone line to make people understand that " no, it's not something that happened suddenly, the condition is progressive- it's in the name and nature of the disease! What do you mean "we've discharged him"? We've been somehow coping but that doesn't mean we will continue to cope without help! Yes I said I could get him ready in the mornings single handedly - but that was months ago, now I can't! No, it would not help to have short visits for carers to take him to the bathroom or to bed - he is impulsive and cannot wait a minute when he wants to do something. Yes, he slept 5 hours last night - that is no guarantee that he will sleep tonight. Yes, it is 10 days since his last fall - no wait a minute - now he's on the floor - can I call you back later?"
The unpredictable and ever changing care needs are the most difficult part to explain, so the resources that the PSPA provide should be very helpful in your situation.
Wishing you and your dad lots of strength and good days on the journey 🌻🫂
It can be swings and roundabouts....if care isn't in place shout loud and long for it, request a care assessment and be assertive in saying what care is needed and if symptoms have progressed request a chc care assessment fir nhs funded care Bergenser, This is so well written and just sums up what we face when dealing with the "professionals" I will bank and save your words for use later. 😀 we had the opposite when rather than pushing us out of the door too quickly we struggled to get out to a set up with better care provision already in place at home In A&E after a fall a doctor wasn't keen to discharge my husband even with head injury checked and deemed ok into my care with carers already in place and kept saying "we need to understand what caused him to fall" I said its the PSP (I'd already done my usual PSP mini training session), yes he said but why did he fall!!! Its the PSP i repeated , his response "we can't let him home until we get to the bottom of it!!! Well that's going to take a while I said 🤣It took a very pragmatic and experienced OT to override him. ....internally I kept thinking "what a numpty" I wonder if it showed on my face. 😁😊
TEZ117, You make a valid point that this forum isn't widely promoted and is often found by accident Its probably the most valuable and informative source of useful and relevant information on symptom management and both practical and emotional support. I know the link is via the PSPA site but when I joined I didn't really know or understand much about it so I'm going to ask PSPA if there is anyway they can promote this forum more actively to newcomers and old hands. If you need more specific help and info on social care and NHS care provision do ask away on here as there are many members who will respond with useful and valuable info and advice xx
Spread the word the most valuable tool in your fight and care. Take the time to investigate the information here. Can't stress the dangers of the falls. We installed 22 rails in our house and my partner died from a fall
Tez117, Milliedog is correct about the lack of clarity in signposting. I would ask you visit the PSPA website (pspassociation.org.uk) click Help & Support and then The PSPA Matters Magazine. Scroll to the coloured map. Locate where you are on it - the name associated is your Care Navigator. Phone the Helpline and ask to speak to her. She will know about the care support in your area and the help the PSPA can give you including - local groups near to you if any - Online Zoom Groups so you can to talk to others like you - A Link Volunterer (who has cared for a loved one) who could visit you at home, if there is one available in your area (the PSPA are currently recruiting and training). The confidential Helpline is there for you to talk and resolve personal problems - an added benefit to the valuable advice you will find here. All my very best wishes
Let people know what region you are in I am in Western Australia and no one knows about PSP in this small population no support groups or education I had to research everything on my own ...through this forum I met some amazing people around me and we met in person and we were able to help each other more than any health professional provided
We are also in WA and our diagnosis keeps changing from Parkinsons to PSP and back again, depending on the doctor. Very frustrating.
I had doctors who had never heard of it I had doctors who denied it what hospital are you under Fremantle or Fiona Stanley what allied health do you have? Immediately reach out to Visibility (guide dogs wa) best service we had I have a physiotherapy guy who has dealt with psp don't worry about the doctors they are clueless and don't really care your are just a number be proactive only you can help yourself in WA asked for palliative care about 4 times and got nothing reach out if you need help I intend to be always helping anyone I can as a legacy to my beautiful man
I too am in WA and mum is in a care home in Hilton park, they have had 2 other cases there previously. But as you say, Drs are not up on this at all. I too had to research to figure out what her symptoms were related to. When I suggested PSP to drs at Freo hospital they dismissed me. Wasn't until we saw our Neurologist that he confirmed PSP by her PET scan. We have been back to see him in this month (beautiful man) and he said final stages of PSP and about a year to live.
The fact that it is not widely researched or known about, is the reason we are donating her brain.
Jules
x
Hope he gets sorted soon 🤞
so sorry to hear your plight. Stick to your guns and refuse to take him home until you have had a proper care needs assessment. In our case having failed to persuade a healthcare professional to come and do an initial checklist assessment, the first step in CHC funding because according to them he had no medical or nursing needs ( he is non verbal and immobile and cannot reposition himself) I refused for him to be discharged following a hospital admission with aspiration pneumonia. We were self funding. He was eventually discharged home with a care package. The initial assessment followed done by the discharge team and he has been awarded CHC funding! Do keep very detailed daily records of everything to do with his care and medical interventions. Managing all the falls is challenging. That was probably the hardest part for me when he was still mobile. Keep strong and reach out for support and help for your own mental health too.
Hi Tez, and welcome to an unwelcome world!. I am M, age 82, PSP diagnosis 6 yrs ago. Whatever you believe this network exists! Like you I wasn’t provided this information. I am now trying to pass on any bits of info from my own experience , like useful/positive/beneficial. I am on specific diet, targeted exercise, supplements, etc, etc......via my occasional newsletter. If yo like me to send pls provide ur email address.
BTW how old is ur dad, and how far deveoped? There are a number of PSP variants - faster or slower, and seem quicker acting for younger people. Neuroloists don't tell this useful info!
Remember PSP stands for Please Stay Positive, and don't panic ..... leave that fo the professionals!
Best wishes TimbowPSP
Hi Tez117! Please search this site for Rodicio Rodicio's posts. Hope this will help you. Ask him for help. Good luck! hugs
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