Eye movement problem

[Fer39wer47da]

I am very new to this site, but I've read most of the stories, and they left me feeling so much in awe for what all of you are going through. I'm Anne and I live In France. And I was diagnosed in 2011 with PD? But during the course of the treatment, my excellent neurologist thought that I had more of à parkinson plus syndrome, or otherwise à PSP plus, because mine is evolving very slowly.

Apart from falling on average 3-4 times a day, mostly when I need to get started, which result In 'cemented' knees , lots of blues and open wounds , and torn muscles in my right shoulder, I have been lucky and I have 't broken anything, a matter of luck and strong bones, I guess!! I fall forwards, sideways and backwards, but i'm so used to this situation now , That it seems to belong to me .

What worries me more is that I have serious problems with my eyes , eecially the muscles, keeping them open isn't always easy, and especially since I have to wear contactlenses because of another condition called keratocone, It is not easy to get them in in the morning,sometimes they disappear behind my eye and stay there, locked as it were , for 2 Days. Sometimes I can Be Heard screaming at this awful PSP,, but most of the Time i just cry my heart out ,until the moment comes when I can say to myself: that's enough selfpitying, it won't get you anywhere , so stop it. And that is then that for the day.

I wonder whether there is anyone out there with same problems?

[DoreenC]

What a beautiful lady you are. You will need a loving supporting family to help you through and thus site is full of amazing people. Keep reading and posting

[Satt2015]

Hello and welcome Anne, although I'm sorry for the need to welcome you!

A beautiful photo!

I'm hoping you'll get some responses from our dear Psp patients (I'm a carer for my dad)

X

[Satt2015]

Sorry Anne

Just thought of something I believe some Psp patients have Botox for the eyes.....x

[kathleenclark1]

Hi Ann I have Botox injections every three months in my local hospital. They work well in keeping my eyes open. Good luck you sound very positive

[easterncedar]

Hi, Anne. My sweetheart's neurologist recommended botox when he was bothered by his inability to keep his eyes open, but a fall delayed the procedure and after a time it seemed to bother him less, so we didn't go through with it. In researching this I have also come across a procedure in which tiny gold springs are set in the eyelids. I do not know of anyone here who has had this done. Your problem seems to call for the advice of a real specialist, in any case. The actual movement of the eye is usually affected with psp, which is why it is called that, aside from all the problems with eyelids. I'm glad you have a good neurologist. I hope you also have an ophthalmologist who is proactive in your care. All the best, Easterncedar

[Marie_14]

Welcome Anne. Sorry you have had cause to join us though. Think you have got answers re botox which seems to be the answer? Hope so anyway.

Marie x

[shasha]

HELLO ANNE - I TOO HAVE PSP FIRST DX IN FRANCE AS PD IN 2010 ... I ALSO HAVE THE SLOW VARIETY THANK GOODNESS BUT I DONT CRY AS I HAVE A WONDERFUL HUSBAND , FRED WHO KEEPS ME SAFE AND HAPPY ''' # DO STAY IN TOUCH AS I AM SURE THAT WE WILL HAVE A LOT IN COMMON -- WE MOVED BACK TO THE UK FROM FRANCE IN JANUARY OF THIS YEAR AFTER 8 YEARS OF HAPPY LIVING NEAR LIMOGES #]]

LOVE AND HUGS SHARON

[Fer39wer47da in reply to shasha]

dear sasha,

don;t get me wrong , i too have a wondrous husband , but , but thta doesn;tmeni ,m not crying azi hen i ,m cryigo,tils

[Fer39wer47da in reply to Fer39wer47da]

dear sharon,

don't misunderstand me, I too have a wonderful husband who is coping quite well with the inceasngly more difficult situation;. it is just that sometimes I don't want to bother him with my crying bouts, thatv i cry myhe

[Fer39wer47da in reply to Fer39wer47da]

sorry I don-t seem t be able to type properly,but i hope you got the message! i already feel ashamed of myself and i must admit a good cry clears the horizon,

wherabouts are you living in the uk?

OUR 3 sons all live overthere, so we do tend to visit as much as possible,,,

take care, my dear; hugs from anne

[shasha in reply to Fer39wer47da]

HELLO AGAIN ANNE,

WE HAVE MOVED TO WALES AS WE BOTH LOVE THE COUNTRY WHERE DO YOU LIVE ??

DONT WORRY ABOUT THE TYPING - YOU SHOULD SEE MINE BEFORE I CORRECT IT !!

[Donnasue]

Have you checked the University hospitals for their PSP trials?

[Donnasue in reply to Donnasue]

My husband had found it impossible to read as he could not read a straight line without the letters continuing across the pageeeee like that, and the ability to move his eyes from side to side and up and down. After his first few treatments in a U.S clinical study the improvement in his eyes made reading possible again. Please investigate the same clinicals going on in Europe,China, S. Korea and Australia. With either ABBV or Bristol Meyers drug therapy.