White Cane Assessment

Charlotte has had an evaluation for a white cane. I set it up because I want her to have access to all the tools that she might need but I think I was also hoping that the verdict would be: "She's fine, she doesn't need a cane." 

Not so, she does qualify.

We took her to an area with a grassy bank, a step and a pathway; very uneven terrain and quite a steep slope. She tried out a little cane - which was actually too large for her - and she got the hang of it quite quickly. She seemed very pleased to have a new piece of equipment and she also completely understood how it could help her navigate the ground.

The instructor is going to get back in contact and arrange some times for training in the streets around  our house.

I really worry about this step for us. It feels so huge. It is such a visible marker of blindness. People don't see the person, they only see the cane. I want them to know Charlotte first, not her equipment. It is a tool that I want her to have if she needs it, but I really hope that she won't need to use it.

Will this make her less physically adventurous? What about riding a bike, or going for a run? How do you those things as a cane-user? She jumped down the front steps this morning, will she suddenly stop doing that because she wants to feel the surface all the time?

But... it was clear, from the moment she had it in her hand, how much it would help her on uneven and unfamiliar ground. She was so confident with it. When she handed the cane back to the instructor she immediately reached for her hand as a replacement. I was struck by the difference.

I think I need a bit of an attitude adjustment. This is not a marker of blindness, this is a tool which will give her greater independence.

Movie Review

Verdict: who knows?

Charlotte's first trip to the cinema was not a great success. I admit, I had high hopes. After reading a few adult Achromat comments about how they loved the movies, I was expecting that she would be enthralled by the size of the screen and the darkness of the surrounding room.

I let her choose the row we sat in. We had row B. Actually, I lie: she wanted to move forward one more row but I drew the line at the second row. I think she wanted the front row because she thought someone might sit in front of her.

She tried looking at the screen with dark glasses on and off, and eventually went for off. She often chooses to wear them at home when she is watching TV. She seemed to see fine but she was completely bored less than half way through. She had one particular character that she liked so she pointed her out to me every time she came on screen.

I guess she just didn't like the movie.

Press Clippings

More Achromatopsia in the news today. I am in danger of turning this blog into a clipping service!

Local newspaper article about two sisters living with Achromatopsia. This previous article about one of them is better written and is, to my mind, more interesting.

This week, the BBC featured research into retinal ganglion cells: Drug lets blind eyes see light. It does not refer to Achromatopsia but includes a magnificent picture of the retina.

Gene Therapy in The Economist

I always find it exciting when I see an article on gene therapy in The Economist.

Yes, they like to report on new technology early, but they are also not going to risk their reputation on reporting unpromising studies or research.

The article, Gene Therapy: Ingenious, fixing a body's broken genes is becoming possible, published this week, is a general gene therapy article but the first two success cases mentioned are both related to blindness. They don't reference any Achromatopsia gene therapy, but report positive results for choroideremia and Leber’s congenital amaurosis. Additionally, both studies appear to have the same delivery mechanism as would be used for Achromatopsia, although the article is not specific on method used in the first case. (I also like the picture accompanying the article: clever and cute.)

I always feel a surge of optimism when I read these types of articles, I start to believe that there is hope that Charlotte will be a recipient of treatment. I don't know when, or how what difference it might make but I like to know that there are people out there working on this stuff and there is money being found to pay for it. All of my previous hesitation around such a new technology still applies but it is nice to have a little boost once in a while.