Annedares

Hi everybody, Well where to start. I've read this site for a year now and now I've managed to find the courage to write. My husband Isaac was diagnosed last July with PSP. probably and it three years plus? Just getting to grips attendind meetings and finding all I can. I was a home carer with social work for 30 years and have never came across this awful illness. He has had a few falls and eyes are bad, but finds it hard to come to terms of how slow he has become. I gave up full time work in Scotland last year and now living in the Lake District. I must admit we have had good care here but have to say I believe care in Scotlad is much better. Anyway hope I can join in with you all and will take any tips or hints. Love to you all

10 Replies

oldestnewest
  • hi, my name is emma my stepfather has had psp for 7 yrs now, my was was a carer at a hospital now fulltime at home with peter, it is so hard for her and the family psp is so rare each day is different so better than others, i find the hardest is the communication barrier with the sufferer, we dont live far from you we're in st annes nr blackpool if you need to talk get in touch,

    best wishes

    emma xx

  • Hi again Emma, thankyou for your reply, yes I will keep in touch so much better when you talk to some one who knows exactly what you are taking about. We have our meetings in Carlisle now so much better as we used to go to Dumfries. I've met a lovely lady there whose hubby is at much the same stage as Isaac and we have become friends, We all need to stick together on this one Anne xxx

  • HI anne

    welcome to the site

    I have psp and was dxd in dec 2010

    i live on mereseyside

    keep in touch andd on th esite

    lol JIlll

    :-)

  • Welcome to the PSP site. I care for my hubby who also has PSP. He was diagnosed in August 2010 but showed lots of symptoms before this. It takes a while to come to terms with this dreadful illness but without this site I feel I would have long since given up. Everyone on here truly understands the "awfulness" of this illness but we all help one another and encourage each other to stay strong. It's not easy caring for someone who seems to deteriorate almost daily, but love conquers an awful lot and it's surprising where our strength comes from. Hang in there and good luck.

    Take care..............SuzieQ x

  • I Like that SuzieQ ! LOVE CONQUERS ALL !I will tell my husband that suzieQ . he worries that I do s much for him and occasionaly tell me he is a burden .

    Of course as you know he isn't LOVE DOES CONQUER ALL !!!!!

    Having said that I have always thought how difficult it must be for Some people who have plod along in a marriage and don't really love each other and then are faced with a spouse /partner who becomes dependant .

    Good luck to you all ..

  • Hi Anne,

    Welcome! If you have been reading the site for a year you will know that this is a place where you can come and get tips and hints on caring for someone with PSP, and also a place where you can come and vent when you need to. Both functions are equally useful!

    h

  • Hi there

    I have just joined the psp assoc so this is the first time I have left a comment. My husband was diagnosed with psp last november. He had been diagnosed with frontal temporal dementia in 2009 but after more tests and seeing a specialist psp was diagnosed. Yes it is a terrible illness and like you I had never heard of it before. We moved to Scotland from the Wirral in 1987. I try to take a day at a time and I dont look too far ahead. Jeff is 64 and I am 63 . I gave up my work 18 months ago to look after him. We do have a good network of carers to help me and I have crossroads for 2 and a half days each week to give me a break.

    We do try to make the best of things and we have a good family. I have had to come to terms with it all but it's not always easy. Thank you writing .

  • Hi

    I was dxd in dec a2010 but am still here standing much of the time.

    I have just moved into a ground floor apt as the stairs hd been a problem for months

    But I am hoping I have the skow type of PSP as ii m still here!

    Lol Jill

    :-)

  • Hi Anne, I'm in Australia. Mum was diagnosed last year. I'm her carer. I've just found this website and so glad that I have others who will understand me. I've read some blogs and it's hard fighting back the tears. Hard to find the words. As I read thru ppls experiences I just feel so scared for my mother. Seems its going to get really tough for her and for me. But I wonder, are we better off just coping as symptoms progress instead of becoming a worry wart in early days? We are already exhausted. How much more will we have to endure I wonder. xx

  • Hello mummamia

    I am so sorry so sorry to hear about your mum. My husband was diagnosed with psp last November after a lot of test.

    It is a terrible illness I know but I take a day at a time and any problems I come across I contact somebody to help me.

    Jeff cannot walk and uses a wheelchair he can take a few steps to transfer from chair to the wheelchair. He has problems talking and swallowing.

    I do not look ahead and try to make the best of things.

    Sometimes I just cannot believe that all this is happening to us, I do however try to look at the good things we have. We have a lovely family , a son and daughter and 3 grand children which includes a new grandson just 12 weeks old.

    I just think , well I cannot make jeff better but I can care for him as best as I realise it's so important to look after myself too.

    Please just try to live each day the best way you can, don't look too far ahead and take each day as it comes.

    We live in Scotland and I have to say that we do have a good network of support from drs and occupational therapist and we have a Parkinson's nurse. Jeff has the tremor of Parkinson's as well.

    Take care mummamia

    From miaellie

You may also like...