PSP Association

mum was told august this year she has psp

hi every one i am shirley i care for mum who is 68 and has psp .i first noticed changes in my mum 3 years ago but she still worked fulltime so we thought was just getting to much for her and said why dont you cut your hours but mum said no a year and a half ago my mum started falling by this time she was part time at work and she started falling at work to and was even sent home sometimes . she was nt as chatty either and sometimes when i phoned she would take her time answering and i would say what kept you and she would say i was sleeping which was a thing my mum never done . she complanied of sore back so took her to docs turned out she had bad urine infection so i put it down to that make ing her feel mudled the docotor refered her to stroke clinic but nothing showed up the doctor thier said she might have dementia so after ther 3rd visit at memery clinic she passed all the tests on the 3rd visit was a different doctor who asked if my mum had any detailed scans which i said no he refered her to falls clinic and the doc there said she would like mum to see a movement disorder specialist and arranged for a mri scan and a specta scan ( if thats how spell it ) we went to see specialist in august this year and thats when we were told the awfull news the doctor said life expectancy is 3 to 6 years but mum has prob had it for 3 . i can beleive how fast my mum is changing it is so sad to watch as my mum was allways so active now she sleeps alot and just lays in bed her right arm is really sore when she moves in and some days struggles to get her legs working just 2 weeks ago she said her left arm was sore to so now i am helping mum with her food i am waiting on aphsio coming out to see if will help but been told is part of comdition i hate seeing my mum in pain and so help less . my older brother lived with my mum but he passed away suddenly june this year so me my husband and " kids have moved in with mum as she cant be alone i have home helps who come in and help get mum washed and dressed but they are sturgling beacuse my mums mobility is so poor so until teh bathroom is adapetd she will just have to ger washed down the ot coming out this thursday so hoping to get a wet room so its easier for mum i fell as if i am hittig my head off a bick wall sometimes trying to get things sorted and people say shirley your taking on alot and i say well youonly get one mum and i want to do the best by her i could go one for ever typing but i will end it heer for now hope this blog makes sense as i fell as if am rambling ha ha xx take care every one xx

17 Replies

Hi Curlly,

sorry to hear about your mother, p.s.p. is a terrible ilness, try not to do

to much at once, i have been a carer for two/half year's and have learned to try and plan our day, which does not alway's work, and dont forget their is lot's of help for you,might seem to much at the moment but you can get a

routine of sort's, so keep your chin up and remember you have to look after yourself as well, take care.


Hi Curly

My husband had PSP for seven years. In the beginning he was diagnosed with Parkinsons but after two years and three different Neurologists they realized it was PSP. I took early retirement and looked after him at home. It is no easy task. It seems to affect people in different ways. No two days are the same and this includes their mood swings. It's like living with a different person. I'm sure you will find your way as you love your mother very much. It takes time and a lot of patience for the Carer to adapt to this new and difficult situation.

Best wishes



thanks ladies yes i am trying to get all help in place that i can as i work fulltime to but will prob go part time i am off on sick just now with stress my kids are 9 and 1 so try to get a balance is hard but i promised my mum she wouldnt go in a home as that is why i moved in with her x


Lots of us are thinking of you, it takes time to get your head around the diagnosis, that really is the first step. I am glad you are seeking as much help as you can, you and your family must keep well. my husband is 89 and we were told of his PSP 2008. the good days are cherished and make it easier to accept the not so good ones.

take care



yes kay i am thankfull for everyday that my mum here with us x the hard part is getting things in plcae its as if people dont care of the needs with people with this illness well thats my experience when i phoned up ot to tell them my mum had psp she said she couldnt see it making a difference to her position in the list i was so angry with her attitude she said she could still wait ages i said well my mum doesnt have ages so my mums doctor and nusre sent letters so now ot coming on thursday so fingers crossed things get moving x hopefully phiso be in touch to as my mum is in so much pain with her arms i wish i could take the pain for her x


Dear Curlly. How sad it is your Mum had to see so many doctors before she was diagnosed. My Dad was diagnosed with Parkinsons in 2000, then 2 years later with PSP. Dad passed away May 2010. He was an extremely fit, healthy active man. Like you we thought Dad had it long before then. He would just suddenly fall asleep which he never did. He lost his speech for the last 5 years of his life. This made communication horrendous. My advice to you is to say as much as you possibly can to your Mum, any wishes she would like etc. You have to be applauded for moving in with your Mum and taking on the task of carer, which is no easy feat. My Mum cared for my Dad until she had to have a hip replacement and could no longer care for him, he went into a home. Thankfully he was only there for 6 months. He was taken into hospital with pneumonia, but we were able to get him home with the help of doctors and Iain Rennie nurses, for his final days. My advice to you as everyones has been is you HAVE to look after yourself too, and also accept any help going to make your life easier. Mum had a stair lift fitted, we had wheelchairs all over the house, rails for him to hold on to, we were even considering having a hoist fitted for lifting him in and out of bed. The PSP Association are fantastic in helping people too if you need advice on carers etc. I think these blogs are a great way of helping people so hopefully you'll get lots of advice on here too. Good luck Curlly and take care. Nicola xx


Dear Curly,

I am thinking of you at this difficult time, I cared for my dad.

He moved in with my family and I in November 2001 after my mum had died suddenly, dad was her carer. Dad had had a number of 'issues' leading up to this time; falls, crashing the car....lots, mood swings etc. Diagnosis of early Dementia then Parkinsons, so this is what we thought we were up against.Eight months later the PSP diagnosis was given. At the same time the consultant gave me a leaflet and phone number of the PSP organisation and told me to go away and phone them for information and advice!!!

I have to say the PSP organisation were my lifeline and don't know what I would have done without them. Please to contact them and use them if needed, there help is amazing.

When dad moved in my children were 4, 8 and 11, but I did work at home as a Registered Child Minder so lots of little ones around too. It was hard work and as others have said you MUST look after yourself and accept as much help as is on offer. This was a big mistake I made and did not take the help and ran myself into the ground.

My dad loved the children being around, have your 9 year old read her school book to her grandmother, daily, it will do them both good.

I hope and pray you get the things in place you need soon, I had to battle here for things but made life a 'little' easier when things were here.

If you have a PSP support group near to you I would recommend you try to get along, I found these a tower of stregth and the tips and advice from those going through what I was, or they had experience of in the past was a God send. Even though Dad passed away in 2005 I continue to attend the meetings, with my eldest daughter, to give back a little.

Keep strong but remember to rest. Take care.



Dear Curly/Shirley (not sure which u perfer!)

I really do empathise as much as is possible because you and I are in the same situation. My mum is just 70, I am 30, and she has gone rapidly downhill like your mum in last 2 years since my dad dropped dead suddenly (in front of her). So far they say it is 'parkinsonian' under that umbrella, but she has seen Prof Lees and he has said she can stop taking Sinamet (Parkinsons drug) as it is doing nothing, and he is getting her in for a week of tests in London. Mum is struggling a lot and so we are hoping that her inpatient stay will be in December sometime, but like you find, nothing comes quickly, you have to patiently wait. I too am moving in with mum, we have just sold her house as she only just about manages to get up and downstairs now, and has only loo upstairs.

We are moving into a ground floor flat together. It is hard to know how the future will pan out, and people say to me too, its a lot to take on, but we have to care for our parents dont we. It breaks my heart too, to see this happening. I am so sorry for the loss of your older brother, what a time you have had. i only have an autistic brother, aged 40, and he is now living in supported care home since my dad died.

If you want to email me directly you very welcome:

Keep strong and keep in touch Curly Shirley.

Your friend in the same boat

Clara x


Ps. I firmly believe mum has PSP.x


thanks every one for your kind words xx i am hopeing to get 2 home helps in place soon as at the moment i am helping the homehelp in morn with mum which is fine just now as i am off work but will be a struggle when i go back to work witha 9 yera old to get out to school and a 1 year old to nursery x


Hi Curlly

The help will be great. It's so frustrating having to wait for referrals etc when you need the help now!

You do have a lot on your plate, so you must look after yourself- you'll not be able to look after your mum as you'd like unless you're in reasonable shape yourself. I'm sure your mum is happy to have the family around her, even if she's not fit to play as much as she'd want :)

Keep in touch

Fiona x


thanks fiona x


Hi Curlly,

My Mum has PSP too. She was diagnosed nearly 3 years ago and like you we were told a life expectancy of 3 years or so. Mum is still with us although she has deteriorated significantly. We have a Community Matron for Neurology who has been absolutely fantastic in helping us get the help we need. The PSP Association nurses are also a great help so if you haven't spoken to them yet it is really worth getting in touch. I'm afraid everyone on this site can empathise with your comment about coming up against a brick wall; you quickly develop a hard head and a thick skin.

Have you got Attendance Allowance for your Mum? You can download a form from the direct gov website I believe.

Like everyone else I would say it is important to take care of yourself and your family as well as caring for your Mum.

Take care and do come back and ask questions and get support here. We are all on the same journey.



thank you x


Hi Curly

How are you? Have you considered joining the PSPA? There is also a forum website which is really good, not sure if you have found it. The PSPA nurse specialists are really good.

My heart goes out to you, you have a difficult path to tread. All of us on this site have been affecte by PSP and understand what you are going through.

God Bless you in your difficult journey.

Love Jen XXXXX


hiya yes i have joined the site i just phoned the nurse there as mum in so much pain with her arms x


How is your mums painful arms Shirley, is she coping? Mums legs and back are painful all the time too. Have you managed to get more home help/care? How are you managing it all with the children too?

I am going to be phoning tomorrow to get morning carers again for mum, as after the few weeks 'free' carers stopped, we didnt get round to sorting out paid ones, but mum can barely cope now. Aye aye, its all so tough. Here I am too at 2.30am looking for some support here when I have to go to work in the morning and be cheerful! much love, Clara XXX


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