House keeping stuff:
1. I have looked into on-line shopping and coles does do it, which everyone probably knows. What you may not know is that they will not deliver unless you spend $50 or more. This is a big amount for one person, so I may have to do this once a month and just buy fresh ingredients when I need them and in small amounts.
2. I rang the Glen Iris council regarding the emergency button. They have sent in a referral and someone will contact me to make an assessment and hopefully this will happen soon.
On the 6th of June, the FD foundation is holding its annual event and is honoring seven people affected by the condition. All seven of us will be sitting on a panel and we each have to answer two questions. The first question will be answered by everyone:
What is the hardest thing about FD and how did you deal with it?
Now, looking at the question, I realize they are asking how did I deal with it. This implies that I have already dealt with the issue. More so, it’s been dealt with and is no longer an issue. Then again, maybe I’m reading too much into it.
The hardest thing I have faced is the deterioration of my walking. As far as I can remember I have always had problems with my walking – my sense of balance has always been off. Also, the messages from my brain to my legs haven’t been working as well as they used to.
When I was in school I was never able to do the 1.6k run. I always worried about going on school camps because I knew there would be activities I couldn’t participate in. Later on in my mid-teens my walking started to deteriorate even more and so I had to use friends arms for support when going out. In my early twenties, I don’t know how I did it, but I would walk to the tram stop and tram to uni. I did cheat sometimes and I got a lift to the tram stop. When I reached the campus I would have to walk in stages to get to my classes and I would sit down on benches or hold onto polls to rest.
In my mid-twenties I went to Israel with my parents and this is when we had the talk. I was unable to walk anywhere on my own, I would often fall and I would avoid going places because I was too nervous about what could happen. Mum and Dad had noticed all this and we finally discussed the fact that I have a disability and it’s something I can’t ignore any more.
In 2008 I finally went to see a physio and she recommended that I use a walking frame. As of today, I have been using a walking frame for just about two years.
So yes, I did deal with the issue, but it is time to review the walking frame because the breaks aren’t working and it’s hard for me to walk on even surfaces. I need a new frame before I go to New York so I will be as prepared as I can be.
This is my answer for the first question. It’s a straight forward answer and I have not included my emotional response to all this. I will say that it has been very hard for me and when I first got the frame I cried a fair bit. Two years on I am better but I still have my moments.
The second question is:
How has your family helped you?
This question will be answered in another post.