My Dad and PSP

[Faiza]

My dad was diagnosed in March 2009 with PSP at the age of 70. Prior to this, he had experienced a number of falls and had a number of car accidents through lapses in judgment (I just thought he was a bad driver). It was relief to finally get a diagnosis, but it has been quite an adjustment. Dad's quite a proud man, so it was difficult to get him to agree to use a zimmer frame. You can imagine the arguments we had when it finally came to getting a carer to help him wash himself. Even now, he's always asking how his hair is looking! He is wheelchair bound and has to wear pads. It's awful seeing my dad the way he is now. Strangely, he's smiling a lot now than he did before he was diagnosed. I've always had a pretty good relationship with my dad (typical daddy's girl) so we're always laughing and joking about things. His speech is progressively getting worse. Although he loves his floor lift...as do my niece and nephew (in their eyes, it's a fantastic toy)

Mum's found things quite difficult. English isn't her first language and she wasn't very confident at speaking it. Initially, she struggled to grasp he had PSP. Now, she's conversing well with his consultants. I still go to translate as there's still things she doesn't understand.

Dad's having botox soon as he's experiencing eye spasms. He's a bit apprehensive, but I told him all the celebs are doing it! He's now excited about getting it done!

I'm glad this site has been set up so that we can share our experiences - great idea!

[ray-wiffen-1958]

hi faiza

glad your comeing to terms with psp i was diagnosed with

cbd at the age of 49 which was 4 years ago bu i came to terms

with it quite quick the question i would like to ask you is your dads

eyr spasms what are they like because the last week or so my left

eye keeps twitching all the time i just wonded if it was the same as your

dads eyes my gp says its an infection but im not sure take care.

[Faiza]

Hi Ray,

Thanks for your comment. We were also told initially that dad's eye twitches was the result of an infection. But it slowly got worse. The main problem is with his left eye which twitches and waters a lot, leaving residue on the sides which gets crusty. He also rubs his eye a lot but never says that he finds it uncomfortable. He's the type of person who even in pain, would say it's not hurting! It wasn't until the district nurse came to visit who said that it was eye spasms and now his consultant has referred him to a clinic to get Botox. That's not until next month though.

I would push your gp for a referral to get your eye looked at. I know my dad finds it very uncomfortable as he struggles to focus properly on things when the twitches happen. He ends up covering the twitching eye with his hand.

Hope you manage to get your gp to sort it out.

Faiza

[Faiza]

Ps because we didn't push the issue with his eye, we left it months!

[ray-wiffen-1958]

hi faiza

thanks for your comment it does sound the same as mine

when my left eye twitches and gos out of focus i have to see

the neurologist on the 18 july so i might ask him thanks and

i hope every thing goes well for you all.

[PAT0]

my ex husband has been diagnosed with PSP since January last year but the neurologist thinks he had probably had it for about 3 years. One of the first things we noticed was that he often sat with his eyes closed. His eyes are his main problem at the moment, one eye is nearly always closed and the other either closed or weeps. It is very sad as tv is his main pastime, I am going to mention botox when he sees the neurologist in a few weeks

PatO

[hmfsli in reply to PAT0]

Mum often sits with her eyes closed too. It's a not uncommon symptom. She sometimes rubs her eyes & they get crusty too.

[jillannf6]

hi pato

my eyes are closed quite a lot fo the time and i do not blink any more

drops can help but i cannot wear my contact lenses any more

jill