must learn to walk before i run...........

[kay1]

What a giant step forward, went to care home to visit Frank and there he was, looking as pleased as punch in a wheelchair!. First time i had seen him out of bed for six weeks. The staff had used the hoist and in a specail chair he was MOBILE. Thought of PSP left me, my mind raced with all the options now open to us, first outing was a "walk" in the gardens, then to the dining room instead of eating alone in his room. Now for the two steps back. He has made his room his comfort zone, and now he doesn't want to mix with other people, he is afraid of having to speak to them! The speech has become far worse, and his behaviour more erratic. I WILL be more patient, and move at a slower steadier pace with him - and the wretched PSP.

[Louise-Alabaster]

Weird disease that it is we used to have days when we thought he was doing OK and days when he was just vacant - but we held onto the good ones as if a miracle cure was on its way!! I think sometimes its easy to think about the person with PSP and not how it affects those around you - of course the person is suffering the most but its also very hard for those clise by - not to get angry with the odd behaviour - we used to find ourselves saying all the time 'its not his fault, he cant help it' but sometimes neither can you! Good that he was mobile though!! Keep strong Kay xx

[Kathy]

Dear Kay,

So glad to hear that Frank was "up and about" :-). When Mum temporarily went into a home last year we took every possible opportunity to get her out into the garden or for a "walk" round the block. Are you able to stay with him in the dining room? He might feel less "threatened" if you are there. We were banished to Mum's room at meal times and she found it an unpleasant experience being thrust into a room full of strangers.

Hope you continue to get more steps forward and fewer steps back!

love

Kathy x

[kay1]

Thank you for your comments, always appreciated. I agree about staying with him in the dining area, he has only been in the home 8 days and as per usual I expect too much from him. Off to a BBQ there this afternnon and several other family will be attending with him as well. My mantra from now on will be "slowly but steadily" - at least that is my intention!!!

[Fiona_McL]

Hi Kay, a wander about the garden would be great for both of you.

It took my mum a while to be comfortable having her meals with others- her eating was messy and she needed fed for a while before getting a PEG- but she came to enjoy the company and being sociable. Small steps

[kay1]

just come back from care home - BBQ laid on for the residents and family, sun stayed out, and every one seemed to be having a good time - all is well with the world

[Kathy in reply to kay1]

glad to hear it! xxxx

[hmfsli]

Just to echo what Kathy said, do take every possible opportunity to get Frank outside. I really believe that a good dose of sunshine does wonders for our moods and the health benefits of Vitamin D are well known.

[judy1962]

Dear Kay,

The good days are wonderful and finding things to help our loved ones are elating! I am happy to hear that your husband is doing so well and happy about it. It has been dreadful hot in the our region for the past 2 weeks and I have had Dave in the pool every day. He is able to walk around as the gravity does not matter in the pool. He holds on to me and we make a train and he walk, very very slowly, but we do it and he is getting exercise that he loves.

Take care of yourself and God bless,

Judy

[kay1]

Judy that sound lovely and encouraging, my news is also good, Frank has now been assisted out of bed without the hoist, and had his first shower in weeks, also fed himself, he has been assessed by the speech therapist who has deemed he is capable of eating "normal" food, but still thickeners in his drinks. He has been supported in his walking to use the toilet (yay). I just can't believe the improvement in so few days. It is still hard to leave him the the home, but they do offer such a wonderful practical service for him. There are two other PSP patients in the same home!!