Hurrah for the good days!

[Kathy]

Mum was really good yesterday she stayed awake all day for one thing! She managed the stairs more easily than she has for sometime, she answered several clues in the crossword and we had several coherent conversations and she even picked out some words in Countdown!! Don't know why yesterday was particularly good, or how long it will last but I am greatful for it .....just for a while it was almost like having my Mum back.

[jillannf6]

HI Kathy

great tha tyour mum had a good day!

i am thinking of possibly getting to the London symposium at end of september -train and 2 ngihts in london - may be the last time i could do it as i have a disabled railcardd

it woudl be good to meet up with you and the others on the blog

but it is early days yet

lov jill

[ray-wiffen-1958 in reply to jillannf6]

hi jill,

hope your keeping well im going to the symposium

so i hope to meet you there you look after your self

take care

ray

[Kathy in reply to jillannf6]

Have my place already booked! Would be great to see you there

[ray-wiffen-1958]

hi kathy,

hope your keeping well glad your mum was feeling better

yesterday must be the sun shine that we keep getting i felt

realy good my self yesterday dont feel quite so good to day

but ive got my holistic therapy this afternoon and that always

makes me feel good must go got the parkingsons information

and support worker comeing round in a bit so both of you take

care,

ray

[SuzieQ]

Hi Kathy

It must have been great for you to see your mum more like her old self. My husband has good and bad days and it's the good days that help us carers to keep going. Some days I just want to scream and shout and cry that this horrid illnes is robbing me of my lovely husband. I have said it before - it's like grieving for him while he is still alive. I hope you get more "good" days with you mum. These are the memories we must think of when things get tough again.

Take care and good luck.................SuzieQ xx

[Kathy in reply to SuzieQ]

Thanks for taking the time to reply Suzie. I know exactly what you mean about grieving for your husband while he is still alive. I do treasure the "good" days, although they sadly seem to happen less frequently these days

Love to you and your husband

Kathy

[judy1962 in reply to Kathy]

Hi Suzie,

Sorry this message was meant for you and not for Kathy, but I pray for you too Kathy. I can feel every word that you write. My lovely husband too is being robbed of everything and I too grieve everyday even though he is still with me. I have seen him go from a very intelligent, capable, athletic man to someone who cant do anything for himself. We do get some good days and I thank God for them. I keep praying that my husband might be healed. We have him in a clinical trial for Davenitide, but I a wondering if he is on the placebo as he continues to progress rapidly. This illness is almost unbearable. My husband is young, only 57, very handsome and still inshape physically. I would never have expected this to happen to him. I miss him so much. I still have him here, but I miss him so much. May God continue to give you strength and make this time a blessed time for you and your husband.

With love and kindness,

Judy

[jillannf6]

hi all

i think it si too much to expect of myself to ge tto the London symposium

-cost of train fares is really high now and taxis etc

plus nights in hotels

so...

i will stick with the local meetings 4 now

jill

[Kathy in reply to jillannf6]

Sorry to hear that Jill, but do understand! Maybe we'll get to meet some other time?!?

Take Care of yourself

Kathy x

[hazelb]

Hi everyone....my husband Frank is going for the assessment for the Davunetide trial next month but I'm not sure he'll be suitable as he can't walk on his own at all even with a stick & I'm not sure he'll be able to stay still long enough for the MRI scan.

He also watches/listens to Countdown as well as many quiz shows. He comes up with the correct answers to some obscure questions so I know his mind is still very much OK. Unfortunately by the time he answers, they are already onto the next question.

He has a brilliant attitude & his stock answer to "how are you?" is always "great".

We've just had a holiday & it's taken him 4 days to get over it. He could barely open his mouth to eat for a few days but once he got over the tiredness he's back to "normal".

Take care & try to keep smiling.

Hazel B xx

[jillannf6 in reply to hazelb]

hi hazel

thnaks for your reply to my falling

I hope frank gets on the trial = at Salford?

i usuall6bsay "GOOD" when asked how i am too

i agree ,whilst possible, try and do as much as he can without fallling#

whenwas he diagnosed?

love jillx

[hazelb]

Hi Jill....Frank was diagnosed in April 2007 but probably has had PSP since mid 2005....hindsight is a wonderful thing isn't it?

Yes we go to Salford Royal....his Neurologist is Dr Gerhard.

At the moment he's not walking too badly but only because I hold both hands & I walk backwards which I know is wrong but we are waiting for OT & possibly Physio to visit for a review. We have a SPRINT team in our local area who are fantastic. They deal with all neurological cases.

Take care & keep smiling. Love Hazel B xx