PSP and the real world:

possibillity of doing ordinary things

i am not in denial of the Psp at alll and have been very acccepting of it knowing it will finish me off at some time in the not too distant future

My life seems to b dominated by the illness and i am finding it difficult to do ordinary things - i cannot sing with the GndS group any longer, nor go to the gym to exercise and swim, nor cook a meal at all- all of which i took for granted until 18 months ago

i can still go to rugby matches and walk a little ot the park with an arm to lean on

What other ordinary things can i do given that everything takes so long now ?- gettign dressed & undressed and trying to conccentrate so that i do not lose my balance and fall over

and just having the energy / strength to get in someone/s car and fasten the seatbelt!!

jill

18 Replies

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  • Hi Jill

    The best I could do for my husband when he had PSP was help him to get dressed, help him when he fell over and help him into the car. I bought him a lighweight three wheeled walker so that he had something to lean on when we were out. Our walks were always at a very slow pace but it made such a difference to him. He loved Boules so I managed to find a place where they held Boules for disabled people and he loved it. He also had a morning a week where he played Bingo at a Day Centre.

    I tried to take him out every day so that his day would have some meaning.

    He was fortunate to have me to look out for him. I sincerely hope that you have someone too.

    My very best wishes

    Lina xx

  • hi lina

    thanks for replying

    i have a 4 wheel frame for usign when 0otu walking on my own to stop me faling - it si great

    NBoules for teh disabled sounds good although i never was any good at bowls or boules

    i am on my own with my cat at the moment but with good friends who do make sure i am ok and i may b moving soon anyway (if i can sell my flat)

    love jill

    xx

  • Hi Jill

    Have you thought of U3a,my husband has just joined. they have lots of different things to join.look up on google, for one in your area.do you have someone to take you, they are also very willing to pick you up, if you dont. We have joined the science and technology but there are lots and it is something that will not tax your energy. good luck.Also those Nordic poles are good for balance,have you thought of those to help with walking and they look cool.

  • hi pinda

    yes i belong to u3a and do tai chi /singing/theatre trips

    the nordic poles are a good idea -i must try them

    in wet weather i get a taxi (liek today)!!

    thanks 4 yoru ideas

    love jill

  • Hi there

    Despite all your difficulties you sound a very determined lady and quite realistic too. You are thinking ahead and willing to try new things -all of which are strengths in your personality which wil help you adapt to changing circumstances. Things you are already doing like Tai'chi are excellent for relaxation and maintaining good respiration and cardio vascular output. It means you can also join in something socially too (but can also be done alone if you wish) and it can be adapted to seated Tai'chi if balance becomes a problem. The Nordic poles sound a great idea to help you feel a bit more supported when you walk. In some areas they have nordic walking lessons and go out as a group so again it becomes a social event. If you Google Parks and Open Spaces in St.Helens there are lots of lovely places to walk:

    •Bankes Park

    •Clinkham Wood Local Nature Reserve

    •Clock Face Country Park

    •Downall Croft Doorstep Green

    •Fosters Park (Formerly Hardshaw Park)

    •Gaskell Park

    •Haresfinch Park

    •King George V Haydock

    •Mesnes Park

    •Nanny Goat Park

    •Sankey Valley Country Park

    •Sherdley Park

    •Siding Lane Local Nature Reserve

    •Sutton Park

    •Taylor Park

    •The Duckeries

    •Victoria Park

    Have you also considered going to the theatre with a friend too. Its usually dark so you can close your eyes and listen if keeping your eyes open is a problem -you are doing something socially without having to talk too much yourself and that takes the pressure of you if speech is becoming difficult. I do hope you continue to enjoy as active a social life as you are able to as I know this is obviously very important to you.

    Regards

  • hi katH

    thanksfor your suhggestiions

    i go to the theatre in the afternooonto matinee performances with a U3A group

    i know there are walks with the poles around st helens too but once the wet weather i here(as of today.!) i am reluctant 2 go out as it is so easy to fall over

    Off to a parkinsons group meetign today where we do some seated tai chi !!

    U mus tbe a mind reader!

    lvoe jill

  • Am exaxtly like you with all the same difficulties- Moreover, I feel like a Zombie and everyhing is difficult for me now. This brainfog every day makes me sort of depressive although do not seem to support anti.depressive medecine (I quit after one week). But I keep up my spirit and today, although I always feel the same, My son is coming for a month from Thailand which makes me really happy. Hope you are going better and keep up spirits, one never knows??Can you still drive a car? I cannot which deprives me of going anywhere, but tant pis. Try to think of the nice things you can still do.

    ineke

  • hi ineke

    no i had to give up drifving over 12 months ago as i crashed my car

    (a writ eoff but i was ok)

    so i am reliant on friends 4 lifts/ taxis etc when the weather is bad

    it make ssnse 2 persevere and give the anit depressantt 4 or 5 weeks to start to work = i have taken 1 or another over the last 35 years and they do lift the mood

    i do nto have the probem iwth muzzy head which is 1 good thing

    love jill

  • I now have a tentative diagnosis of PSP and am at the stage of trying to accept what is ahead. I have learned that it is not pleasant from the blogs. I have given up driving , cooking and most of my activities and spend a lot of time listening to taped books. First time I have found someone in the early stages and it is good to connect to you.

  • hi lucillle

    myi last comment may not have got to you

    I cannot drive ; no longer cook ro go out for walks on my own

    but i still get to friends "dos" events some live music (whih is my real love) and need ot ttink of taped books now the winter,weather is coming on us

    - i cannnot read easily at all and find it imposs to concentrate for v long.

    Keep in touch or if you want my email address it is

    jillannf6@gmail.com

    take care

    love jill

  • P.S. I am also having a problem with fastening seat belts.

  • Hi Jill

    All I can say is that your determination is amazing and you are obviously giving everything you can a go. An inspiration to us all Jill. Take care of yourself.

    Lesley x

  • hi lesley

    thanks for your support

    and good luck with teh pops website!!

    any news on it yet

    love jill

    xx

  • Hi Jill

    Thank you ever so much for asking. With everything we are doing we have currently got over £1000. Rochdale Adult care had a Jacobs Feast a couple of weeks ago which we put on the site and we raised £105 and managed to get a lot of information to professionals out there on the day and I have been invited to some team meetings, to talk about my experience with dad so that is really good. I've got the zumbathon coming up and there are lots of people registering off line so I should have an update on that in a few weeks time. T Genes-ish Tickets for the concert on the 14th October at Oldham have gone on sale today and I know there were quite a few people waiting for the tickets to come out, so fingers crossed. The song has raised a bit of money but I've still got to hear from I-Tunes on the first amount so I can put that up on the website when I hear anything and I've had some CD's made so I can sell them at the events as well.

    I wish you were a bit closer to Oldham Jill, with your warm and positive attitude it would have been great to have had you able to come to our events but I will keep you informed.

    Take care of yourself

    Lesley x

  • Hey

    So you know my stiuation..my dad passed away in January at the young age of 62 from psp.

    I understand you know what the future lyes for you. I am not sure if that is a good or a bad thing to be honest.

    Your typing is still good so thta's positive. Brain stimulation is a massive factor so make sure you start working on that. It really really does matter. Make your family aware of this if they dont know already. Try and keep your legs and arms moving. Read watch eat talk as much as you can. Take full advantage of life and go on that world trip if you ever wanted to do it.

    Sorry to be half glass empty but you must now you must be glass is full and do as much as you can go travel the world, eat what you think you may not ever eat, have no regrets, tell everyone now who matters that you love them.

    Their is no escaping the truth of psp, its a ********** disease that wouldn't exist if their was a god..............

    From a very sad daughter of a father who's weding anniversary should have been this Wednseday

    xxx

  • HI Jiulie

    How r u - sorry about the pending anniversary ..

    thanks for your support = i do crosswords daily (on line as i cannot filll ithe letters in by hadn) and the odd sudoku too

    I do find it difficult to concnetrate on anything and do not read any more (eyes a;problem too) and i t do watch one of the TV soaps now !

    But the winter is acoming on - after the last week fooour indian summer and i shall b inside a lot more.

    i cannot think of even travelling to Europe any more but would be quite happy to hae tim away in england /scotland

    take care

    ;lv jill

    xx

  • Hi Jill

    PSP is an awful disease and I feel for you so much I really do as I know second hand what it does.

    For as long as possible stay positive as you can and keep up with the crosswords! It really will help you mentally. If it is difficult to read get audio cd's, my dad loved reading and so by getting audio cd's he got the chance to still to hear a book instead of reading. Go swimming you will have great fun and feel a sense of not feeling scared abou falling over. It will keep your muscle strength up. Most swimming pools have a chair to lift you in and out of the pool so you dont have to worry about getting in and out.

    You dont have to answer any of my questions but I maybe able tohelp you if you do.

    Do you have support from family and friends? Are you still eating or do you have a tube fitted? What stage are you at with PSP? Do you live in a house with stairs? I am assuming that as you are able to type you are in the early stages?

    It would be great for you to go away on holiday, even if it is in the UK it's good to get outside and try to maintain a normal life for as long as possible. Dont hibernate as it's coming up to winter, enjoy it! For as long as you can enjoy everything.

    Where in the UK are you?

    Look after yourself and I am here for any help and support or questions you wold like to ask, I will give you a truthful answer.

    xx

  • hi julie

    i can no longer swim as i cannot co ordinate my hands and legs = loss of fine motor skills -(_cannot fold anything or polish anyhting)_and cannot march with my arms - so gave up ,my gym membership and go 2 a tai chi class instead

    i live in nN W England and am in a 1sl ffoor apartment and it is on the market at the moment as i need 2 move to a ground floor flat(somewehre)

    I have good friends and neighbours but not much family - my dad is 89 and liives 130 miles away but my cousins are great (they also all iive a great distance 4m here and i cna no longer drive

    (i have not had children

    I am still eaeting ok (tho messily) and woould not have a peg tube fitted as eating an enjoying my food is importan tot me

    ~The speech therapist put all eh pros and cosn of peg feeding to me and a t moment i just hav eot thciken my drinks

    love jill

    ps my typing is dreadul but i do try and correct it b 4 sending !

    right hand stronger htan left (!)

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