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Building a support system

Many people with macular degeneration lack support from family or friends. If you live alone please share how you manage to cope with difficult issues like transportation when you can no longer drive.

  1. I live with my husband who is helpful. However, people as a whole do not understand how difficult it is to sometimes function in the outside world. This problem includes instutions that should know better and are mandated by law to provide services to the disabled. Last year I had surgery and notified the hospital ahead of time that I was low vision. The paperwork was in a 10 font, and when I asked for a larger font. they had no readable paper work. My doctor and Medical office never provides a readable font for my after visit summary. My church provides some information that I can read, but often not. I have become politely vocal about my needs.. Hopefully, as more of us become vocal about our needs things will become better for the low vision and blind. Mary

    1. thank you for sharing your thoughts and experiences on the subject of support. It is fortunate you have a supportive husband. I run into the issues you mentioned about forms at medical facilities being too small to read. When I tell them I can’t read it I have had them offer to get someone to read it to me. If possible I request the forms ahead of time. It’s difficult but I can get them filled out using a magnifier. My church has large print literature but even that text is too small for me to read. I can’t use the hymnals but thankfully I know most songs by heart. I am glad you are speaking out about your needs. I agree each of us must advocate for our needs to bring change. Our disability is invisible so I understand why others don’t always recognize our need for help. I find most people willing to help when I ask. Warmly, Sharon Moore patient leader

  2. I'm 70yrs old. Still work full-time in a skilled facility as a cna. have been getting the shot. In my rt eye only. And it was responding good...until this past weekend. I. Gave the problem a couple days to see. If it would correct itself . But the Casper belly with gray like drippings were still there. And people's faces on TV looked like they had a stroke. The dr had me come in and found that the eye did a backstroke on us
    I was given an emergency injection and have to go every 2 weeks now for the shot with alternating medications. I was diagnosed this past July with wmd
    . It saddens me this has happen after doing so well
    The dr is encouraging tho

    1. so sorry to read about the changes in your eye. It’s good you went in right away and started treating it. It must have been a bit frightening when the distortion started. I hope the injections bring improvement in your vision. Years ago I worked as a CNA in a nursing home. It is a hard job but can be very rewarding. Are you able to continue working with this change in vision? Keep us posted on your progress. Warmly, Sharon Moore patient leader

  3. I live alone. I discovered last year that driving home after getting drops was extremely dangerous on the freeway. I couldn't see clearly with the dark lenses they gave me or without them. I kept switching from sunglasses to no sunglasses as I was straining to see the highway lines (which in San Antonio are barely there) and cursing the receptionist who told me I'd be 'just fine'. (Not really. LOL.) San Antonio has a complicated freeway system and heavy traffic. So this year, I've decided to spend the extra money and get a Lyft. As it is, I canceled my appt. because, using the grid, I see no difference from a year ago so will wait until next year. I am so tired of going to doctors! My copay is $40 and that, for me, is a lot.

    1. the clinic I go to will only give injections if you have a driver. I can barely find my car let alone drive after dilation. I am sorry you don’t have the support you need. Checking your eyes with the Amsler grid is good but it doesn’t take the place of a checkup. I understand how hard it can be to pay for the medical care you need. Do you have dry macular degeneration? Warmly, Sharon Moore patient leader

  4. Hi Sharon, I actually don't know which I have. Last year was the first time I went to an eye specialist b/c my optometrist noticed some macular degeneration. Neither said dry or wet and, not knowing anything about MD, I didn't know enough to ask. The ophthalmologist said I was in the beginning stage and it might advance but it might not. I will reschedule in a few months, once I have resolved my other issues...hip pain (walking with a cane now) and toenail infection. There is always something! Thank goodness for Medicare 😀

    1. it seems likely it is dry since the doctor said it was in the early stages. Wet AMD is always classified as advanced. In that case most doctors would start injections. I understand about prioritization with health issues. I hope you get your other health issues resolved soon. I thought you might benefit from reading about lifestyle changes that may slow the progression. https://maculardegeneration.net/lifestyle-changes
      Warm wishes, Sharon Moore patient leader

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