Today was two steps forward and one step back. But sometimes it was two steps back and one forward. When all is said and done, I may be one step further along the road than I was, but that could be debatable.
What was good? We heard about an inquiry we made to the Macular Degeneration Partnership (we asked if they would publish our website address). They like our website and would like to run a short piece on us. Sweet.
Not so good was I emailed ‘my’ researcher at Wills Eye Hospital. They have been told the stem cell research on dry Macular Degeneration is being held up six months. The Stargardt’s study is on hold even longer. ‘My’ researcher seemed upset because she has a lot of people clamoring to get into the study. Maybe if the corporate folks had to answer to the patients we would have a little more movement.
People going blind here! Figure out your organization stuff later. Give the go ahead to the research now!
The only positive of having the study postponed for another six months is I can now plan a summer vacation. Perhaps a cruise since that way my husband won’t be stuck doing all of the driving. I also looked at one cruise line site and they advertised accommodations for disabilities. I might be ‘forced’ to take a cruise to check out their low vision accommodations. Sometimes this is a tough business.
I have been discharged by my low vision specialist. I am getting my reader, near point and far point glasses. Add to that my CCTV and I should be good for a while.
The low vision specialist is also referring me for mobility training. That is sort of exciting. I would still like to learn how to safely cross the street. The thought of being roadkill is not exciting at all.
So, still just trying to move along this low vision path. I get discouraged. Just the same, accepting the problems and trying to deal with things as they come along seems better than the alternatives. I still believe I can make it until my early 90s – unless I get mowed down trying to cross the street, that is.
I don’t intend to spend the next thirty years doing nothing!
My low vision person invited me to a support group meeting. It is going to be a ‘toy show’. Many of her other patients are rejecting the supports the toys are able to offer. They are standing back and being what in DBT terms is called willful. Sort of a “my way or the highway”, “choose to die on every hill” attitude. My low vision specialist thought seeing someone who has embraced the toys might help. Not sure I can make it. Transportation. But I will try to get there over the summer.
In the meantime, I do believe I have a topic for my next post!