PSP Association
5,571 members7,590 posts

What a week

So far this week we have had the dietician to see Brian been to neuro-rehabilitation centre seen the speach and language therapist also had carers start. Not sure who is having the biggest melt down.

Brian has lost more weight and his swollow reflex is poor so it looks like a peg is the next step. Am thinking I would like this roller coaster to stop and let us off. Janexx

14 Replies
oldestnewest

This afternoon I went into the bathroom, locked the door and said out loud, "stop the world I want to get off". I think we have had similar weeks. It's amazing how many people we come into contact with because of PSP and how many people we speak to on the phone. I hope Brian likes the carers and you don't get too many different ones. May next week be less eventful for all of us.

Nanna B

Reply

NannaB the carer's are working out fairly well. Its the same four on a rotation so Brian is getting a bit more relaxed about them. More importantly I am more accepting about it. Was worried that there would be a stream of strange people in and out. We have one girl in the morning at 7:30 and I assist with transfers. Then we have 2 girls at night and they do the lot. So I am still keeping my hand in but its a bit more relaxed for me (I sit and have a glass of wine while they do the work at night).

Yes next week seems to be quieter only one appointment in the diary so far. Janexx

1 like
Reply

Keep smiling girls!!! Next week is bound to be better, it can't get any worse - can it?!!!!

Lots of love

Heady

1 like
Reply

Oh yes, I understand completely!!!!!!!!!!!!!!! I need a little padded cell of my very own.

Jill

Reply

Not sure I can provide the padded cell but sending you lots of love and thinking of you xx

Reply

Just keep watching that light at the end of the tunnel ...

Mo

Reply

jzygirl, Hand in there. It's tough in any stage but not swallowing is the worst. However, you can do this!! You've been successful in dealing with PSP this far and should be proud of yourself for doing so. Remember, friends and family are watching to see how you handle the tough parts. Show them you are a strong woman!! Hugs, Jimbo

1 like
Reply

Keep going Jane - we are with you all the way.You give me such courage to face what I know will inevitably come for my wife .George

Reply

Jane, you and the other carers on this site are exceptional people and you are allowed to "melt down" on occasions - you find me anyone who can cope with this dreadful illness and just take it all in their stride?

Just want you to know I'm thinking of you, I'm pouring you a virtual glass of wine, breaking you off a big chunk of virtual chocolate and giving you a virtual hug xx

Reply

Can I have some, pretty please!!!!!,,!

Lots of love

Heady

Reply

heADY

HWO GOES THE HOLS IN S AFRICA =- OK I HOPE

FOR YOU AND S

LOL JILL

:-)

Reply

Hi Jill, really good thank you! The weather is really hot, great for S! A change of scenery bucks him up no end. Even a boring trip to the supermarket is interesting, therefore gives him a mental boost! The TV here is sport mad, so he can watch an interesting program, instead of the endless circle of Sky news! Plus, a big plus, the wine is great!!! (Hope your table has recovered!!!)

Lots of love

Heady

Reply

heADY

HWO GOES THE HOLS IN S AFRICA =- OK I HOPE

FOR YOU AND S

LOL JILL

:-)

Reply

me too please?

i spilt my glass of(re)wine over a v valuable table las t night and my partner was v annoyed with me to say the least so he got to drink the rest of the bottle whilst i went and watched the soaps in the bedroom and waited for my carer to come to put me to bed1

such is the life of a PSP person....

lol Jill

:=)

Reply

You may also like...