Thanks to BYU1972 and Campal for your posts and sorry for delay in replying. Yes Coventry is in the UK right in the middle not an especially pretty place but handy for travelling to other places. the botox was meant to set the muscles in place but didnt work also the shelved contacs may work for some who had more eyeball movement but not for me. You ask if my life has been good and I assure you it has been I am 57 and I think the main factor in this has been my husband we have been married for 32 years in May and love each other more each year . As far as working I have worked as a childminder in my own home and also helped my husband who is self employed as a bookkeeper but he has always been the breadwinner which has been a real blessing. In Britain I qualify for a low rate of allowance which was because a year ago I was registered partially sighted due to the lack of peripheral vision. Regarding pain and discomfort I can only say I have not suffered pain too much since my lids dropped as I dont get as much dry eye , I am aware this may be worse once I have the sling op so will have to use drops all the time, the reason I am having it now is because they have dropped a bit more and also they were trying all the alternatives first. I also get a lot of double vision due to the eyeball problem which to be honest does get me down as I would like to read more but find I cant for very long ,closing one eye helps.
I do hope things improve for you both and that you have good people around you , I am sure you will have as you are caring people who will attract others who care.
\i am still waiting for my actual op date but will let you know how it goes.
The following 2 users give hugs of support to: bullfinch BYU1972 (02-19-2013), Campal (02-19-2013)
The Following 2 Users Say Thank You to bullfinch For This Useful Post: BYU1972 (02-19-2013), Campal (02-19-2013)
bullfinch -> Thank you for responding! I thought you were a lot older, sorry I'm glad you feel like you've had a good life so far, what are your concerns about the next twenty years, how do you think they will be? Good? Bad?
I have some more questions, and it would be nice if you would answer (if you want to!). How old were you when you were diagnosed with CPEO? Do you have double vision all the time, or does it come and go? Can you drive? Are your eyeballs completely fixed, or do you have some movement? For how long can you read, if you close one eye? Can you watch tv without problem? Sorry for all the questions, but I really want to know... So please tell me! Thanks and blessings to you!
The Following User Says Thank You to Campal For This Useful Post: BYU1972 (02-20-2013)
I am optimistic about the future , hopefully the sling operation will make a big difference but having read some of the posts I now realise there could be some complications but as itis my only option I want to have it done. To answer your questions campal, I was diagnosed about 15 years ago, for the previous 15 or so I was seeing an eye specialist regularly for droopy eyelids and limited eye movement but he didnt say ,,cpeo until he sent me for further tests to a neurologist who had a thigh muscle biopsy done under local anasthetic , it wasnt very pleasant but not too bad. After that I had yearly checks for muscle problems which showed facial limits, my smile is not as broad as it once was but not too bad, and also my grip is not what it should be but again not too limiting. I dont drive this is due to having to turn my head rather than quickly glance was a risk I nor my driving instructor felt was worth taking, I think this is down to each individual to decide. I dont have double vision all the time and my specialist said normally the brain compensates for the lack of eye movement, I am struggling now as I have been looking at the screen for too long, sorry but I will have to leave it for now, take care
Bullfinch... your story/symptoms so similar to mine. Here in Tampa, Florida, my neuro. told me he doesn't do muscle biopsys. one Neuo opthmo wouldnt' even see b/c i DON"T have much double vision. I hate driving b/c my eyeballs don't move right or left. PPL don't understand how much I hate driving. On a bright sunny day, i wear two pairs of sunglassses. I am also bothered by the computer so am having a hard time finding a sit down job b/c i have chronic heel pain. Anyway... thx for your comment... I can really relate and love your positive attitude. I dont drive at night b/c with all the glare of the lights and all plus no movement w. eyeballs... that is just too difficult and scary.
Last edited by BYU1972; 02-21-2013 at 07:04 AM.
Reason: add one sentencce
The Following User Says Thank You to BYU1972 For This Useful Post: bullfinch (02-27-2013)