Newly diagnosed

My mum has just been diagnosed with PSP. Whilst it is not good news it's good to know as it has taken over a year to get to this point. My sister and I have both joined the association and are keen to gain as much knowledge and advice from fellow sufferers and carers. Amongst other things we are trying for a blue badge - does anyone have any advice to increase mums chances of securing one?

Many thanks


14 Replies

  • Hi CM

    Firstly I'm very sorry about your mum

    Does your mum have a neuro team if not speak to the gp you need them!

    Get occupational health in too!

    Speak to age uk or citizens advice they will help with form filling for

    Blue badge

    Attendance allowance

    Taxi card

    So much to think about but you need all the help you can get!

    Also the Psp assc will give you excellent advice on who to contact

    Plus the people on here are simply amazing and I'm sure will have loads of useful advice and hugs


  • What is a taxi card? We have a taxi every week to take my husband to have a bath at a local nursing home, but I pay the full rate for a taxi to accommodate a tilt and space wheelchair. £30 a week to travel 4 miles.

  • A taxi card is something you apply for through the local council

    I don't think all areas in the uk have this

    But basically it will massively subsidise your journeys, ie if the fare is £10.00 you pay £2.50

    Ask your local council if they provide this

    Good luck


  • Thank you for your reply. I'll phone the council tomorrow. I know we don't qualify for reductions on water bill as we don't get pension credit etc. (We rather stupidly saved our money for our retirement and so do not qualify for assistance nor can we spend our savings on holidays, sadly). I also didn't know about applying for motorbility and now my husband is 68 and too old to qualify.

    :( Wise after the event!

  • Yeah same as my folks

    Saving in the end doesn't seem to do you any favours in this situation!

  • So sorry about your mum. It's good you have found this site so soon. I've gained so much from it.

    My husband was turned down for the Blue Badge initially because he could walk more than the distance they base their decision on. I appealed and we had o go for an assessment. I emphasised the fact that he could do the distance but couldn't get in the car unless the door was wide open and I helped him, meaning I had to stop the car in awkward places with traffic building up behind, get him out and balance him against another car before driving into the parking place. I also said he fell regularly, including whilst waiting for me to park the car. At the assessment, I didn't help him so he nearly tipped the chair backwards sitting down, nearly fell when getting up and nearly fell several times when the assessor escorted us from the building (all part of the test to see how he walked). Of course I saved him each time he nearly fell but the assessor was a nervous wreck by the time we left. She said it would be several weeks before we heard but less than 2 weeks later the blue badge arrived.

    Nanna B


  • CM sorry to hear about your mum, I agree with all NannaB said, we had to go for an assessment, I had to help George also, we got our blue badge after a few weeks. Get in touch with your social worker, age concern are very good, they come to the house, and you can get attendance allowance, some councils give 25% reduction on your council tax, and I get a discount on my water rates. Good luck Yvonnexxxxx

  • Hi Yvonne

    I'm interested to know how to go about getting the water rate reduction

    Can you tell me how to go about that please?? X

  • I phoned the water board, I can't remember who told me about it, and because George is disabled we get a reduction, also filled out a form if the cut the water, because of a problem, we get priority. Hope you get it Yvonne x

  • Ooh thx I'll get onto that x

  • Hi, sorry to hear about your Mum's diagnoses. You have already done the most important thing. That's find this site. It is a life saver!!! We are all Carers like me, husband diagnosed 2013, or sufferers of PSP. So we tell it as it is, warts and all! Everything I know about PSP, I learnt on this site, from all of the wonderful people that contribute! You can rant, rave kick or scream, we all share the good,, the bad and the ugly!!! Nobody will judge, all feeling exactly the same!

    As to getting a blue badge, I found it very easy. S got it before his diagnoses, he had had a stroke, so we thought that was what was causing his problems. I said, he could walk the distance required, but needed the extra space for the doors to be open. I would also add about falling, that you can't just pull up at a drop off zone, because your Mum, WILL fall, or wander off into the traffic! Don't forget to state the full name of the disease, and highlight the Progressive part, you will be surprised how many people don't understand that bit!!! Especially the Powers at B!!!!

    Lots of love


  • Sorry to hear of your mum's diagnosis. I agree with all comments. Blue badge depends on your local authority. Make sure you take your neurologists diagnosis letter and information from from PSPA about what symptoms PSP take from the sufferers mobility and life.

    You need to get the benefits sorted, best to get help from CAB or similar group as easy to get knocked back by DWP. CAB know the words to use that get the marks towards correct assessment. Besides PIP if mum under 65 or Attendance Allowance if older. Get Carer allowance for yourself.

    Get in touch with local authority social services to discuss adaptations and get on their books. Give them the PSPA information. One of the best items I found are the PSPA diagnosis cards easy to carry and hand out to any professional who you meet as they probably have no idea of PSP.

    Your hospital will probably have arranged Therapy Services (Occupational therapist, physiotherapist, speech therapist (sometimes called SALT team). If you hear nothing with 2 months contact your mum's GP to arrange for them to see your mum.

    Best advise though is to keep in touch and sign your mum up to this site.

    Best wishes Tim

  • Hi CM, sorry about your mum's diagnosis. Just wanted to confirm this is a great site where you will see how everyone shares with each other how they manage different situations and the advice they can give. Also the caring they have for one another is brilliant. I only joined recently but have gained so much from it. Take care, Nanny x

  • Hi - sorry to hear about it - though please note PSP, CBD and other diseases are related and quite similar

    The strangest and most difficult thing is the change in personality - the patient can become very mean and hateful and angry - in case that happens, please be very patient - even when you know they don't mean it, it can be very hurtful and it can make you angry so please be very patient (really) - keep taking turns caring for her so you are not overwhelmed

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