Telling people

thdownie

A couple years ago, had two cornea transplants due to Keratoconus and Fuchs Dystrophy. I have some vision, but it's abnormal. The vision loss was accompanied by hallucinations and a Cognitive decline. I could no longer read or listen to stories. I can listen to shows I watched pre-transplant. I can only read picture books up to an 8 year old level. The past year, I've also had seizures, and after a year of testing, I have dementia, but the type is still in the air. I've been socially withdrawing big time the past year. I have friends in the blind community, but they socialize in large groups and I can't do that any more. It seems I keep trying to rebuild my life but the parameters keep changing. I am 64 and in assisted living, and getting some help from my doctors, speech therapist, OT, and counseling. I'm just really struggling with telling friends. My sister and daughter know everything, but only one friend. I tried telling someone and she said, you sound fine to me. I told her I wouldn't be chatting with her if I was having a bad day of it. I only venture into conversation on a good day. I welcome any comments.

David1946

If they are true friends theybwill understandx ... myb. D3 sorry for the misspelling. My family and are fully supportive and that means a lot knowing I have their support so don't becafrsid to tell them.

Watson1

thdownie you know your situation its best to educate others of how your world is. its hard but those that have their own emotional stability will understand and help you others will unfortunately be lost. but in the long run you will realize you have done the best you can an none of the situation is of your making.direct them to books about blindness, dementia there are so many great stories of journeys like yours. i have alzheimers and try to explain to those surprised eyes ……

Adrienne125

Sorry you are experiencing all this. I am neurodivergent with ADHD, and I have some associates who have told me the same thing. I have Fuch’s disease as well. An ophthalmologist is monitoring it, but I really don’t know much about Fuch’s, My husband was just diagnosed with Alzheimer’s.

Watson1

thdownie its a win some loose some situation but in the long run you will fell better your self by just let ting the trueths about your condition be known. i have alzheimers and am working on an art project to visually explain the alzheimers experience. all of us with varied disabilities must not remain silent in a world increasingly filled with oppression and lack understanding of human conditions……….