My husband was diagnosed with "probable" PSP by neurologist and a second opinion gave the same verdict. Diagnosis was 2 years ago. My GP has had no contact at all I have not been referred anywhere for help and did not even know of the psp association web site, found it by sheer fluke. When and where can I get support??? Who gets told I am caring, our next hospital appt is May. We are awake most of the night as he suffers with pins and needles and needs help in and out of bed. He is 70 and I am 69 with a bad back.he often falls it's hard to get him up. The stairs are difficult so is showering him.i don't want him in a care home but towards his last days if I can't manage will I have to pay for his care and sell our joint owned home. ? Where will I live? We have no many questions so much worrying I feel the river beckoning some days , then I think what would happen to him and somehow I keep going.

Well that's my rant , I know I'm not alone, g

God bless you all.

18 Replies

  • Gypsywoman, I don't know where to start...I can't believe the GP and neurologist did not give you any guidance. Grrrr. Both the PSP Association in the UK and CurePSP in the US have been very helpful. There are support groups. If you are in the US, you can find a list on the CurePSP website. Their forum is also very helpful. Also, go to the Yahoo cbgd group. They also have a lot of good information. At our first neurologist visit, I went in with my husband's health history, questions, what I was doing for him. You are his advocate and need to be like a Rottweiler to get the information you need. You can get solutions to some of his issues, although treating the disease is another matter. My hope is that I can slow the progression until they find The Cure. You can ask me anything an I will try to do the best I can to find an answer. Strelley here is fantastic as is Robin on the CurePSP forum. Good luck!


  • Thank you helpful

  • On a practical level the first thing you need to do is get in touch with your local Social Services. Just tell the facts as you have mentioned in your post. Also mention that you are at your wit's end with worry. They will refer you to the right department for help.

    If nobody knows your problems they can't help you. You may have to become a bit pushy to get the services you need.

  • Thank you I had no idea I could do that , I feel as if I am all on my own. I may not need much help yet but knowing this thing is progressive makes me want to be prepared and know the help available before it's needed. Thank you again

  • We are in the UK & had a similar experience with my Dad & lack of support from the GP. I finally emailed him the guides the PSP Association has put together for healthcare professionals. Dad's neurologist recommended neuro-physiotherapy; it was through them that we hooked into a specialist team (occupational therapist etc) who became Dad's medical care advisors, ensured we had the right equipment at home & helped us apply for financial aid. I think the GP is supposed to help engage the specialist team, although we did it ourselves. I suggest you ring the PSP Association helpline if you are in the UK, they were so incredibly supportive for us. Then see your GP & demand help. We managed to keep Dad at home until 2 weeks before he died, but it was expensive care. However the NHS package "continuing healthcare" (funding for individuals who are not in hospital but have complex ongoing healthcare needs) is something you should look into. Your GP or the specialist nursing team you are assigned should help you apply for this. I wish you every strength.

  • Thank you only this week we have changed our GP in the hope we get better help.Our last surgery operated a telephone consultation service , only in rare emergency were you given an appointment.I managed to have 2 lots of medication and referral to special I st and eventual operation and biopsy result ...all without ever seeing they. We have yet to go to the new surgery as only just changed. Your reply gives me hope , thank you

  • hi

    ii agree with all the above repleis

    u def ,need a social worker who will help put things in place 4 u. i have PSP dxd 4 yrs ago now and am still here., upright most of the time and now ouse a wheelchair inside sand out for my own and others safety

    plz try yoru local hospice too if u r int he UK - they are really good at giving advice and caring for the person in day therapy AND GETTIGN THINGS DONE!


    lo ljil

    hugs `nd xx to iu and yours

  • Gypsywoman

    Are you aware the PSP association have specialist staff to advise you and give support very much like Mcmillan nurses support cancer sufferers.

    As far as I know you wont have to sell your joint home as you live there too.

    You need to contact Adult Social Care to get help you may want to ask them about assistance from carers. A nuerology occupational therapist physiotherapist and speech and language therapist (SALT) should also be assigned to you.

    Speak to the social worker and OC therapist about having a stairlift fitted and about converting your bathroom to a wet room. If staying upstairs is too dangerous then consider moving your bedroom downstairs.

    I don't know how far gone your husband is but the following are things we now have in place

    2 x carers 4 times a day

    a hospital bed with air mattress

    comfy reclining chair

    Access to Occ Therapist, SALT, physio, District nurse for incontinence issues medication and dressings

    The NHS as stated do provide funding for continued nursing health care which is not means tested (your social worker can get the ball rolling ie get check list started)

    Recently the NHS also implemented a personal health budget on top of Continued health care.

    Re help with funding from Social service for assistance from carers, although they means test it can only be done on your husbands savings and I think the threshold is about 22k.

    Also have a look at day centres you will need the break.

    Hope this helps, wish we had known this years ago. Its a lot to take in I know.

    Good luck


  • have you got CHC . I am thinking of making videos of my husband in his OFF STATE . it's sides law when ever anyone comes to visit to assess him him he happens to be in an ON state . if you know what I mean .

  • Who referred you to the neurologist originally? Presumably your GP. In my experience GPs don't contact us so as soon as we received the report of the neurologist, we made an appointment to see him. He then contacted the neuro rehab department at the hospital and things started moving. I can't understand how a GP can practice if he never sees his patients. Please make sure you visit your new GP as soon as you have been registered. Don't let it drag on. You think you don't need help yet but I think you do. You are having broken nights and from experience I know that lack of sleep will do you no good at all. Next time your husband falls, don't attempt to get him up, Dial 999. Ambulance staff would rather come and help you than you to end up unable to look after your husband because you have a bad back. Mine had to go into a care home for two weeks for that reason.

    You should be entitled to benefits that are not means tested. As advised already, ring social services today and explain your situation. You may not be the Rottweiler all us carers need to be so do you have any family or friends who can help you assert yourself and if necessary, make calls for you?

    I'm really sorry you have had two years of no support at all and hope things are soon put in place To help you and your husband.

    I think you need a big virtual hug so am sending one now.

  • When I made the app for my husband to go to our GP I asked the receptionists to ask the doctor to read up about PSP which she did the doctor is very nice, when we went today she was going to make all the refererals today, she had the letter from the hospital in front off her, which I felt was a good sign, and she is going to recommend we see her and other specific doctor, so ask them to read up about it first hope you get the care you deserve Yvonne xxxx

  • You, like many other PSP caregivers, are in a tough situation. I always say that women who care for males who have PSP are my all time heroes. You can do this job!! Many others have walked the same path and survived and you will also. Have you thought about a Hoyer Lift? They are excellent for getting a person up off the floor easily and also to move them from location to location. I found the lift a must in caring for my dear wife. Jimbo

  • Thank you to all you lovely people that have replied and given me some hope and some ideas , I will make list and start pushing a bit. I think I've just been overwhelmed with the diagnosis and trying to find out about it.As I found out more I have felt very much alone with it all and panicked. Thank goodness I found this site and you wonderful folk who understand . Hugh hugs returned to all of you xx

  • Hi, you don't say where you are in the world! If in the UK, get in touch with the PSPA. NOW!!! Like everyone has said, they will help with everything. Even contacting your GP to make sure he has all the information he needs. Get a referral to a Physio TODAY!

    Go and see your new GP IMMEDIATELY. Do not wait!!! You must must get help. Nobody is going to offer their services, you have to demand it. Find out where your local hospice is and get a referral for your husband to go for day care. This service is brilliant.

    None of this is easy, especially if like me, you are a quiet, private person. I'm sorry, but that person left the room, the minute your husband was diagnoised. You have to stand up and fight for everything. Be a pain to your GP, make sure he does exactly what you want him to do. I know the main problem is, you DONT know what is needed, or who is out there to help. So ASK!!! We will help as much as we can, post as many questions as you need to. Someone will know the answer, or be able to point you in the right direction.

    So your tasks for today is - make an appointment with your GP, phone the PSPA and Social Services and ask for a Carers Assessment!

    Please try not to worry about tomorrow, today has enough challanges to be going on with!!!

    You can and will get through this, life does carry on, but know you are not alone, we are all just a email away. Being a world wide site, someone will answer your posts quickly, whatever time of day. This forum is one very big shoulder to cry on, please use it!!!!

    Lots of love


  • I have taken this all on board, you are right I don't know what's available for me but I have made list and am getting started. This is a wonderful site, so good for my moral. Thank you

  • Hi gypsywoman

    I agree with everything that has been said already! It's a shame we have to spend so much time and energy fighting for support but it's worth it in the end. My mum was diagnosed 5 years ago, and is at the 'final stage', although we've been told this for the last two years. Dad owns the house they live in but, as they have no savings, mum received full funding for carers - 2 carers four times a day. Mum is now on continuing care and this means the health service pay for the care package. Mum also gets a carers allowance, for dad. As mentioned previously, the PSP advisors will be able to offer you advice,and we also found Age Concern a great help.

    Good luck, will be thinking about you and your husband.

  • If you are in the UK, I would highly recommend you seeing if there is a regional PSP Specialist Care Advisor for your area. I found one and lets say the floodgates opened (I had been going round in circles trying to find the right people and the right order to do things) We now have a dedicated Parkinson Nurse, social services and living independently have been out and Parkinsons org sent out a lady to do the benefit forms for us. You can apply to your council for a blue badge and radar key (for the disabled toilet use when out and about). Also check if you can get help with your poll tax, any savings are a bonus and I use ours to get Malc out and about on the days he can so he gets the best from that day.

    I don't know what your home set up is, but Malc couldn't get out of bed without my help, I now have a handle (like in disabled bathrooms) on the wall opposite his side of the bed so he can get himself both in and out of bed. There are other aids if this doesn't work. I hope you, like me, find your guardian angel to get you through what is a minefield of red tape for benefits and services, which has left me the energy and strength to deal with the PSP itself. Wishing you all the best and thoughts with you. x

  • Thank you for your comments very much appreciated. Through friends I heard of attendance allowance and I filled forms in and applied, this process took me a week to complete but my husband eventually was granted that. Another disa bled friend gave me a radar key and same friend told me to apply for disabled badge. ,this ha s just arrived and will be such a help. So I am getting things together slowly but it is such a slog, today at 4 pm we have a doctors appointment at our new surgery , I am hoping I will be pointed in right direction for more contact and help. This is news surgery we have just changed to. Last doctor had not seen my hus band or contacted us for 2 years since we went and demanded to be referred to a specialist. I went up some 3 weeks ago to explain the deterioration in my husband. Hugh effort to see the doctor as they operate a telephone consultation as first point of call. I refused to go home and wait for the call as I did not want to discuss things in front of my husband. Eventually they gave in and I was seen. After explaining all to the doctor I was asked if I wanted these things logged!!!!!!! Is that not what is usually done ? I said yes and then was shown the door and told "when you can't manage anymore ring the surgery and I will put you in touch with an occupational therapist" perhaps I expect too much. We've never been folk to go to the doctors unless desperate. I resolved to change surgery and am hoping for more interest from the new one.

    I found your reply very helpful and reassuring, all thoughts and ideas are useful . I did not realise so many others are in same position. Thank you.

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