My amazing lovely brilliant dad was diagnosed with PSP IN October 2005 after he kept falling backwards. Sadly he lost his incredibly brave fight on 8th January 2011, after contracting Pneumonia. As much as it is an incredibly cruel disease my dad was an inspiration. Not once did I hear him complain or moan. He just dealt with it. Mum was a 24 hour carer even though she has MS herself and both of them were just amazing. I miss my dad every day more than I could ever imagine but I know he is at peace now, and free from all he had to go through. If there is anybody out there who ever wants to talk or ask about anything we all went through I am always happy to talk about it. This year my brother and sister ran the London marathon for PSP and raised over £4,000 and we are all very proud of them. Unless you have witnessed someone living with PSP you cannot understand what it does to a person. Dad used to be a very lively active man that used to embarrass us regularly!! - to see what he went through every day broke all our hearts. But at least he is free of it all now. Miss you dad xxx
My Amazing Dad: My amazing lovely brilliant... - PSP Association
My Amazing Dad
hi louise
i have psp diagnosed dec 2010 and am upbeat as i know a lot of my health porblems have a reasono
your approach is great- your rdad is at peace and has obviously left a large gap in your lives
i am 65 and sadly do not have children and for the 1st time i am glad as it is so difficult to see a parent go downhill healthwise with the PSP
keep blogging
jill x
Hi Jill - thank you for leaving your comments. It was very hard because dad was such an active person - he was healthy, didnt smoke or drink - and it all feels a bit unfair because of his age - he was 62 when he died But we still had lots of fun with him while he was here - while he was still able to do things he did - if I can recommend anything to you is to keep active for as long as possible - we kept dad moving as much as possible - plus speech therapy to keep your throat muscles working - I really think starting these things early help alot. I wish there was more I could do for those suffering - but if you ever want to talk to anybody please always feel free to chat to me - I know first hand what people go through and sometimes a chat helps. Dads spark never left him - that kept him going - for you to stay upbeat is a great way to be and I wish you lot of luck xxx
hi louise
i used to b v active and am frustrated that I no longer drive and cannot just do anything without thinking of the consequencies
but i am sitll abe 2 get out when needed, whch is great,and keep my independence
i have a new carer now who comes in mon - fri for an hour a day to help me as it is important to do thngs nto related 2 the Psp-
like going shopping and the local saints rugby matches!!
love jill
xx
Hi louise
Sorry to hear about the loss of your dad to psp its a horrible
disease to have i was diagnosed with cbd 5 years ago at the
age of 49 it was a shock at first to be told that you are going
to die but its no use worrying about it you just have to stay
positive and stay active as possible im quite luckey at the moment
as i can still drive im haveing hydrotherapy at the hospital for
1 hour a week for the next six weeks it stops your muscles from
going in to spasm and im being assessed next week to see if i
can start the lee silverman voice treatment i try to go for a little
walk most days i cant go far but every little helps i used to run
marathons play snooker and play a lot of football so it takes
a lot of getting use to when you get told you cant do it any more
im not giveing up with out a fight,
take care ray xx
Hi Louise,
Thanks for the post about your dad. It was lovely to read about your memories of him and what your brother and sister have done for charity.
My dad was diagnosed in March 2009 at the age of 70. He'd had lots of falls prior to his diagnosis. Similar to your dad, mine never smoked or drank alcohol. He was also working lots, doing DIY etc. Mum and dad were both looking forward to their retirement and now she is his full time carer. Dad doesn't like going out of the house much now. He's shy and scared of being seen by people he knows in a wheelchair. He's quite a proud person, even worrying about the state of his hair when he wakes up from his afternoon sleep! Regardless of what dad's going through, he's always smiling. He also has a huge smile of his face when I come to visit and they are memories that I'll never forget. He's always telling me to come and visit everyday (I live 2 hours away) which is something he would never say 'before PSP'. I think it's more to do with him wanting to play smuf village on my ipad!
Sometimes dad doesn't recognise pictures of me - refers to me as 'that girl'. It is heartbreaking to see him confused.Although he does say I'm his favourite, which doesn't go down too well with my sister 
I also wish there was more I could do to help!
It is difficult to see dad going downhill, but he never stops smiling!
hi faiza
plz tell your dad not 2 worry about the wheelchair-- -people use them all the item now and it means he can get out iinto the real world!
i went to LLandudno for the day with the local Parkinsons group and nearly everyone was on a 4 wheel frame (myself included) or scooter or wheelchair
it has become a resort for the disabled!
but the pier was thus accessible to wheelchair users!
try to get your dad to think positively eand nor to worry about wha tpeople think-his smile would brighten anyones day i am sure!
i know it si difficult when a proud man has to change habits of a lifetime
and i find people do not understand that this psp willl get worse so it is importnat fo rme ot do somehting each day
(even if just watching the soaps on a Sunday if it is too wet ot go out( see blog)
jilllx
Hi Faiza - I'm so sorry your dad has this. The hardest bit was seeing a very proud, active happy man just go down hill. However I made sure I saw him as much as I could and I used to go round and shower him every other day whilst he could still walk, then took him out at weekends when we could - it used to really upset me when people stared at him in his wheelchair though! But we took him to football and cricket and for days to the seaside and he seemed to get so much from it.
I made sure I saw him as much as I could and we all helped mum as much as we could - there were lots of hospital visits and calls at 3am when he fell out of bed but he never moaned. I used to try speech therapy with him and we used to have a real laugh trying to make him talk 'posh' - he was a lovely lovely man and a great dad - and I was sooooo lucky to have him as my dad - and although its awful and its hard to see them like it I know they still want to see you all the time - please keep going to see him no matter how hard. I miss my dad so much, even the ill dad, although I am glad he is no longer suffering.
We used to get dad to do excercises in his chair - kept him moving alot. If I could give any advice it would be to just be there for them as much as you can. They do know you are there and if I can give you any advice on anything I will try to answer you honestly if there is anything you want to know. Big hug though - I know only too well how hard it is xx
Hi Louise,
Thanks for your response. I took dad to the hospital for a check up a few weeks back and as we were waiting for my mum, so many people were just walking past my dad and looking at him intensely. I found it so disrespectful.
He loves being wheeled around downstairs quite fast! Although my mum starts panicking about the state of her carpet! Dad does keep asking me to take him to Nando's. When I come to visit and tell him we're going, he starts to panic and says he's not going. We're having a vehicle assessment soon, so hopefully that might go some way in helping dad feel more confident to go out.
The speech therapy can be difficult sometimes, as English isn't my dad's first language. So I make sure we have a bilingual session!
It is very tough to lose someone you love. I lost my brother in a road accident and that was pretty tough going! In a way, losing my brother has helped me to cope with the inevitable with dad.
I do want to know if you've had experiences with tube feeding. Thankfully, dad is still capable of swallowing, but experiences some difficulty. He struggles more with using cutlery. Our consultant has explained that tube feeding is something we need to consider maybe toward the end of the year. But dad doesn't want to be tube fed. He's quite shocked that he'll have to. Any advice would be great! x
Hi Faiza - losing your brother as well must have been awful I ma so sorry - blimey life sucks sometimes! But I know my dad just loved having us all over - even if it was doing the smallest thing - the thing I found he responded to the best was being treated normally - because of how he looked people assumed he was not all there and would shout at him - he was still all there - we used to get him to tell us his favourite jokes!
Yep dad had a peg feed tube fitted two years before he died. Sadly his eating became almost zero because of the swallowing and when he did eat he coughed so much he was often sick so in the end we had no choice. It was a simple operation and it was basically a tube hanging out of his stomach - he was then attached to a machine that fed him a brown milkshake sort of stuff - he lost loads of weight but he could also be given his meds through it as well. However towards the end he pulled it out constantly - I dont know if your dad has this but dad had this sort of aggresive strength - he never hurt us but he was very strong and would fight you off to pull the tube out - and that then involved lots of hospital visits to get the tube refitted - which didnt happen very quickly sadly. So for the first year it was fine, but once he realised he could pull it out it became a complete pain. However there was no other way to feed him. Sadly if your fathers throat muscles go completely you have to have it fitted as there is no other way of feeding them. But leave til as late as possible - and make sure he eats as much as he can now because dad lost loads of weight. The other option is if he has it fitted he can be fed both ways - so still eat orally but if he has a bad day you can use the peg feed tube. It has to be cleaned regularly and we used to have to have nurses in daily to set it up even though we were more than capable. In the end dad had a 24 hour live in carer so they did it. We all tried to make sure though that it was us that did as much for him as we could - the nurses were OK but you are always going to be more caring when its your own dad.
Oh yeh - and a hat and sunglasses stopped people staring so much at him!! We also bought this exercise thing - it was basically a set of two wheels and pedals that sat on the floor and he used that every day to keep his leg muscle strength up. We also took him swimming alot because the boyancy of the water freed him from the spasms alot - it was the only time he was able to move around without any help and he loved it. If I can think of anything else I will let you know x
Hi Ray - a friend of mines dad has CBD - I think they are very similar? 49 is so young - I didnt realise you could get it that young. Like I said to Faiza - we kept dad moving as much as we could - we made him walk every day whilst he still could, took him swimming and he used an exercise machine. Sadly we left speech therapy too late and it didnt have much effect but if I had to do all this again I would say take prevebntative steps before they happen - so have speech therapy now, even if it doesnt seem necessary, keep moving every single day, eat for as long as you possibly can - dad found ice cubes and ice pops good when swallowing became more different. If you wanted to ask anything please do - and good luck x
Hi Jill - good luck with your new carer and the new drug as well, anything you want to ask please do - please read my blogs to others as you may find things that help. x
Dear Louise,
Thank you for sharing about your Dad with the rest of us. What a lovely photo of him. He was lucky to have you around. My heartfelt condolences to you and your family
Take care
Love Kathy x
Thanks Kathy - that was dad on my wedding day - about 6 months before he was diagnosed - thank you for your kind words x
hi
tube (peg fed) is not for me in the future
if i cannot eat or swallow i do not want ot continue
ps i cannot swim any longer as 18 months ago i lost the ability ot co ordinate my hands arms and legs
and aqua aerobcics was too dangerous in the changing room -balance etc
jill
Hi Jill - dont blame you regarding the peg tube - that was the final straw for dad as he loved his food. Sometimes I wonder if it was right to get it done at all. But hey ho. And dad had no balance or anything but the pool were really good and let us take dad into the ladies changing room - they also had a hoist to lower him into the water. He had to wear a life jacket as he had no co-ordination either but once in the water, because he had the life jacket on, he just splashed about!! Just gave him a bit of freedom - not for everybody I realise x
I think we may have seen your brother and sister whilst supporting the
PSP runners in this year's marathon. Well done to both of them and my best wishes to you all.
Hi Louise...you sound very much like my daughter. My husband Frank has PSP & Nicola would do anything for her Dad ( so would our son Mark )...all she wants to do is win the Lottery so she can give up work & help me look after her Dad full time!!!! I'm so sorry you no longer have him with you & realise you must miss him so much.
Frank & I have just been on a cruise to the Norwegian Fjords...I was v apprehensive & although it was hard work we had a good time. I couldn't fault the crew or the other passengers...they were all really helpful. We try to get him out whenever possible & include him in lots of things. He is v tired all the time but his standard answer to " how are you? " is always " great ". He never complains & has only once commented " this is a cruel disease ".I'm the one who rails against PSP.
Take care & try to keep smiling.Love Hazel B xx
Hi Hazel - thank you so much for your email - he was a great dad which is why we were always there - I used to try to think of ways I could win money as well so I could stay at home and look after him! LOttery tickets, any way I could!! Funny what you want to do for someone you love
We took dad away when we could but in the end it got quite hard - all I can say is make the most of all the times you get - even now and although I was expecting it its still a shock.
If ever you or your daugfhter need a chat though pleaase let me know - at least I really do know how you all feel! Stay strong and showing the love big hugs xxx
Or any advice either by the way - lots of love to you and all your family xxx
Hi Louise....thanks for that. It's always nice to know someone's there.
A friend of our daughter's is doing a sponsored tandem skydive in Sept/Oct organised by her employers & is going to raise money for PSP. She's like a daughter to us & it brought tears to my eyes when she told us what she's going to do.
Take care & keep smiling. Love Hazel B xx
Hi Louise, sorry to hear of your loss. It's great that you were able to keep your dad so active and busy- a great boost to him, I'm sure.
You're right about the shock- my mum died from PSP about 2 weeks ago and I'm amazed at how shocked I still am. You'd think that 4 years after diagnosis of a terminal illness, I'd be expecting her to die of it sometime...
Hi Fiona - I read about your mum - I am so sorry. It happened 6 months ago for me and I still cant believe it, I can still cry every day and i miss him so much. I get through it by reminding myself that he is free of this awful awful disease and he is up there partying and being dad again - and that helps. But I still have nightmares about him suffering and what he went through - weirdly he was diagnosed in 2005 so we kknew the inevitable was coming but the day it happened was just such a shock - it was one of his 'better' days - and even now I wake up most mornings and have to remind myself that it happened.
Try telling yourself that mum is free again - she is up there having a party again - and she is 'mum' again and not held back by the waful things they go through.
I am at the angry stage now - angry that he was taken from me so young (62) and he never got to enjoy his retirement he worked so hard for - I am angry for my mum who is left behind - when I see old couples together I feel angry that its not 'my' mum and dad but I have been told that is just another stage of grief.
Writing on here has helped alot - I have rambled on quite a bit in some places but its theraputic - and even if you giuve 5 seconds of comfort to someone else who knows how horrible it is that helps me.
I am sending you a huge cyber hug because I know exactly how you feel - but time does help I promise xxx
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