PSP Association

THE S.A.L.T .AND ME

HI I SAID I WOULD LET YOU KNOW HOW I GOT ON WITH THE SALT WHO CAME OT C ME ON TUESDAY AM OF THIS WEEK

DESPITE MY SPEECH HAVING GOT MUCH QUIETER AND MORE GARBLED SHE SAID THAT MY SWALLOWING HAD NOT GOT ANY WORSE AND SO WAS SIGNING ME OFF AN DI WOUDL BE RE-REFERRED THRO MY GP IF

AND WHEN IT BECAME NECESSARY...

THR SYSTEMY HAS NOW CHANGED AND A S I WAS IN E MAIL CONTACT WITH THE PREIVOUS ONE I FEEL A BIT BEREFT.....

12 Replies
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It's good to know your swallowing is ok Jill. We only hear from SALT every six months unless we need her and then we can ring the neuro rehab team and request a visit. We didn't even see her when Colin was having all the swallowing tests to see if he needed a PEG. The hospital SALT nurse dealt with us then. In fact Colin's rang yesterday and after our conversation she said she would ring in six months. It's a shame you can't email yours now. I expect you built up quite a relationship didn't you.

I'm sorry you feel bereft. I hope "talking" to all of us will help.

X

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yes nanna b

it will eb ok if i can "talk" on this site

lol JIll

:-)

1 like
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HOW FRUSTRATING FOR YOU JILL - HOPE YOU GET THE HELP AGAIN WHEN YOU MIGHT REALLY NEED IT

LOVE FROM SHARON XXX

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I think Jill that once you have been in the system as you have ,that you will get a quick response when you next contact them . Our community Matron just discharged V from her work load - she has been coming every month for the last 7 or 8 months but she said it is an open door when we need her just shout and the speech therapist said the same . If you have a problem tell all of us and we will come and shout at them !

Love Georgepa

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thanks for that georgepa and sharon

i appreciate what you have done for me so far by keeping my spiriits up and long may it continue!

lol jill

:-)

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it is a lonely place when any of the depts sign u off . the same thing happened to us with the social worker after six weeks . That was two years ago , it's now six op months since I asked for a second reassessment , They came this week but the girl was so nice she has given me her e mail they don't do it all the time , she gave it because we have been waiting for such a long time . what a difference that will make . I am not going to.make a nuisance of myself once the card plan is sorted again .

we haven't seen the salt lady for quite a while I believe she is going to beg in touch with her , although when she was her last gave Me a No to ring if neccessry

maybe she happened to assess you at a particularly good time . johns is very unpredictable and fluctuate .

although he can still swallow sometimes he cannot even open his mouth it becomes distorted along with the tongue where it slows down . they never seem to come when you are at your worse . they certainly don't with Jonn .

they should have been here at four this morning when he was shouting to me uostaitprs , first his ankle is playing him up . I came back down and sorted that , he asked the time and I told him . Went back upstairs to bed Pom getting in shouted to ask time again , he has got a thing about time but find or read clock .so I am shouting downstairs the window was open I felt like the knocker upper . it went quieter , then I heard him again and asked if he was ok and he ask me who did I think would win the election !!!!!!! That was now 5.30 . I gave in got up and brought a pillow down with me and fropped in to a chair until 7

do you have choking episodes , At one time job was having them for about two hours when he first got into bed . That seems to have eased since stopping the patch he wore

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YE SI DO HAVE CHOKING EPISODES AS WELL BUT JTNO WITH EATING B4 BREAKFAST WHEN I AM SITTIGN A TMY COMPUTER IS A FAVAORUIT ETIME BTU WHEN I AHD A BAD COUGH (I COULDNT COUGH ANYTHIGN UP) MUY CHOKIGN WAS A LOT WORSE AND WOUDL THEN GO INTO A BAD COUGHING FIT AFTERWARDS AGAIN B4 MY BREAKFAST - I TAK EA PILL FO R ACID REFLUX JAND HAVE TO WAIT 30 MINS. MIN. B4 I HAVE ANHTHIGN TO EAT SO FM GETTING UP AT 6A,,M OR 7A,,,M I TEND TO CHECK EMAILS ETC

THANKS FOR YOUR CONCERN

THSI SITE IS GREAT@!

LOL JILL

:-)

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it's a minefield isn't it

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of course during the day wpespecially when his head is dropped , it is most of the day . I have great difficulty hear and understanding him . he can throw his voice in the early hours of morning

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hi cabbagecottage

\i have just lost a pos t and haven't the energy to repost.it

sorryt

lol JIll

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hi cabbsgecottage

I'm off on my travels today 4 a week and just wanted top say thanks for helping me

i love this site and would not be without it at all

the social worker signed me off as well and i have been in touch with 2 more since to increase e my hours of care

oi ave a tel no to contact them but a reassessment is needed every time i ge tin touch again

the hospice has been excellent at sorting things out for me inc the CHC which i ha ve now got

will eh in touch on my return]

lol jILL

:-)

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Hi Jill, have a good week away!

Lots of love

Heady

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