Thank You All So Very Much

[skye07]

Hello all of you kind people who replied to my post re PSP support in Torquay area.

I have taken all your comments on board, and although I have a great support network ie Marie curie, a fantastic community matron and her team, but as we all know not a lot of people, even professionals have a full insight into this complex disease except us carers who thankfully

answer most of our questions on this forum which is a godsend.

Every reply has information which has helped me ,thank you again, sorry I did not reply earlier, myself and my hubby have both had heavy colds, on the mend now!

Hubby is at the stage where he has had a peg fitted, his swallowing is very bad, lost his speech, and cannot see very well, his carer who is brilliant, takes him for a little drive each day and sits down at meadfoot beach, ( his favourite )

he is a challenge most times everything has to be done now, as most of you agree, and yes it leaves you washed out, but hey ho he is still in there somewhere and we do have a laugh sometimes, evev in our darkest of moments, as he had a great sense of cheekiness when he was well.

All good wishes, luv and thank you once again.

[jillannf6]

i am gla duou have a good carerto take him out

it is ideal if you cna ve osme uyou imte durign this perido

lol jilll

:

[82wendy]

To sky07 Its good that you can see through the disease and sometimes still laugh together.I got upset the other day whilst visiting my mother in law at the lovely home we unfortunately had to put her into 6 months ago.I think I had a pang of guilt that I gave into early. It was my 14 year old who put her arm round both me and her gran and said aren't we all lucky to be here together and still loving each other it doesn't sound much but at that time in that situation coming from such a young person who had lost one gran this year it was quite reassuring and I'm pleased she still wants to visit gran as for whatever reason my mother in law curbs her bad behaviour as she somehow knows that her grand daughter is there.I do think this is a dreadful disease for all

[Sharon637 in reply to 82wendy]

This is a truly beautiful and heartwarming story 82Wendy. For your teenage daughter to have such love and empathy and such a deep understanding of the situation is a true testament to you as a parent. Judging from that, I would say you have nothing to feel guilty about and decisions you made were done with much thought, anguish, deliberation and with everyone's best interests at heart. It is also wonderful to know that so much of the person remains in the sense that bad behaviour can be curbed when necessary. My Dad was the same, the bad behaviour was directed at me and my Mum and was never in evidence when anyone else was around. Although we know the behaviour appears to be a large part of the disease, it is good to know there is enough of the true person remaining to modify it. Thank you for sharing this lovely moment with us. It made me smile so much.

[Croz2307]

Hello, your husband and yourself sound very positive which helps so much, my late husband and myself used to have difficulty with communication as his speech became increasingly difficult but like you we often had a laugh; when I simply couldn't manage to understand despite our many and varied 'solutions' , the favorite being 'give me one word', (we had been married for almost 50 years and could read each other's minds) I would say, is it important, at which he would give me his lovely smile and shake his head, and we would laugh because if we hadn't we would have ended up crying. My heart goes out to you but you are doing well, look after yourself.

[quickgel]

Hello Skye07, I'm so pleased to hear that you and many other visitors to this site still manage to maintain your sense of humour, at times it is ones only ally in the difficulties living with PSP. Ironically it was my wife's ability to smile that ultimately delayed her diagnosis, the orthoptics consultant dismissed my suggestion of PSP on the grounds that people with PSP can't smile!! My wife did, frequently. Some months later a neurologist diagnosed CBD and then, several visits later, PSP. Following the discovery of the PSP Association I met many people with PSP and found my wife's ability to smile was not unique. I only wish this forum had been available to me, long may it continue to provide informed comment and support. My kindest regards to you Skye07 and to all the contributors. Jerry

[jillannf6]

hi

i ha vd psp and can sitll smile!so there to the neuros who will NO Tdiagnose when they should

lol jill

[quickgel in reply to jillannf6]

Hi Jill, glad to learn you can smile and hope you find plenty to amuse you. I guess the neuros are on a learning curve along, it seems, with many of the medics concerned with psp. It must be hard to be sure of the diagnosis but not nearly so hard as living with the disease. Very best wishes, Jerry.

[Croz2307 in reply to jillannf6]

Hello Jullannf6 how good of you To post a reply, I'm sure your smile will lighten the life of all who visit you, well done and keep smiling.