I've had a cane for over a year now but haven't been brave enough to use it. My vision is further deteriorating and I decided it was time to accept the cane. I have an amazing mobility instructor from Guide Dogs who has been helping me learn how to get around using the cane.
A big issue for me is not feeling like I'm in control stemming from the fact I can't see what's in front of me and what's coming toward me. I know I'm a control freak so not being able to see where I am or what's coming up terrifies me and cause me anxiety. I've also realised than to cross roads I simply hope for the best which is not something I'd advise!
Working with somebody is so beneficial, it is giving me the confidence to explore and feel comfortable using the cane. I've learnt how to cross a street, safe places to cross and to trust my ears more. I've also learnt how to use the cane for stairs which hopefully will prevent some of the bruises I have from constantly stacking it! Going up stairs isn't to hard but down is definitely a challenge with the cane and more practice is needed.
In my last session I walked down a main road near my house. I felt as though everybody was watching, of course I couldn't see them, but you get the feeling that people are staring. I was also thinking that someone who knows me could see me and I felt uneasy at the thought. Not so much that I'm embarrassed of my condition but I'm still getting my head around it. It's definitely a foreign feeling that's hard to describe unless you have experienced it. In a way the moment was like me coming out and saying 'hey I'm vision impaired'. I also made a comment about the impression I'd make, walking down the street in high heels with my Louis Vuitton handbag.. Definitely a sight to see!
I highly recommend talking to your local vision impairment organisation and getting involved in a mobility program. Guide Dogs NSW/ACT has been the most positive experience I've had on this journey. And most importantly, don't be afraid to accept help!
Thanks Chrissy - you're doing the Stargardts community a huge favour by blogging. My son Ethan (10) has Stargardts, and we've recently noticed deterioration - scary! Back to table with more assessments. Stay well xx
ReplyDeleteChrissy just thought I would post some information I have found and it could help. There is a company that is called Advanced cell Technology they are conducting the only human embryonic stem cell (hesc) based trials in the Us and europe. Interim Results from the us trials indicate a very good safety record and visual acuity for a majority of the patients over baseline measurements. I just wanted to post and let everyone know about this small company and the test they are doing.
ReplyDeleteTHE ROYAL COLLEGE OF OPHTHALMOLOGISTS’
ReplyDeletePRESS STATEMENT
ACT Trial Approval
Stargardt disease is a form of macular degeneration that causes disabling loss of sight in
young people and is currently untreatable. There is real potential that people with blinding
disorders of the retina including Stargardt disease and age-related macular degeneration
might benefit in the future from transplantation of retinal cells. The ability to generate retinal
cells from stem cells in the laboratory has been a significant advance and the opportunity to
help translate such technology into new treatments for patients is hugely exciting. Testing the
safety of retinal cell transplantation in this clinical trial will be an important step towards
achieving this aim
21st September 2011
Well this is an old blog and I don't know if its too active but i just wanted to share some of my experiences. I have had Stargardt since i was 7. I'm currently 24. I have currently 20/240 vision in both eyes. But just last year i bought my first house. The year before that I opened my own clothing design company, and yes i draw the designs.
ReplyDeleteI can't drive and i should use a cane or service dog but i don't, should. But i can get around by watching and listening to traffic flow.
It is a hard condition to deal with. Especially when doctors say they can't cure it yet.
But there is nothing we can't do and i've made that the motto for my life.
Awesome! I like your starting words to keep the visitor stay and read your full blog post. Anyhow the overall post is really informative and contains tons of knowledgeable factors. Thank u so much for sharing this post.I wanna share some information about certified pharmaceutical company for you.Please visit:
ReplyDeletecertified pharmaceutical company
Hospitals within the reach of all are a reality today. There was a time when around were only few hospitals in India located only in the major cities and patients with chronic diseases required to travel far distances to get cured.
ReplyDelete