Hi, yesterday I went to our village annual party. (I live in France). I was kinda dreading it as this time I needed to take my wheelchair and sit in it when talking to people - not just in order to arrive at the hall. I cannot stay standing up for more than about 5 mins and at the bar area there are no chairs. I also wanted to mingle and chat to everyone. So at first I just leant on my chair and then very quickly I had to sit in it.
I was really pleased that everyone treated me normally and chatted to me. Some people were shocked at the speed of my illness and that I already have to use the chair more often, but after a quick chat about that we talked about more normal things.
Had a really good time, ate a nice meal and met new people. Obviously didn't dance and I came home at midnight - the evening goes on until 3-4 am!!
But I feel I've overcome the first hurdle of going out and using chair with people that I know but are not my really good friends.
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wibblywobbly
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Dear Wibblywobbly, Good for you! Way to be positive! Glad you had such a great time! I admire you willingness to overcome your fear and just keep going and doing! ;o)
Yes, I second that emotion. I use a walking frame at the moment and sometimes wonder how new people will react if I go out socially. But I think if you don't make too much of it then they won't either.
I also applaud your willingness to get out and do things as normally as possible. We also live in France and my wife has ataxia and always uses a wheelchair outside the house. We have always found everyone to be friendly and sympathetic to her situation and accommodating the chair. There are however certain practical difficulties. Our local functions are usually packed so access in the hall is restricted - there are only a few places where we can sit so we need to reserve seats early. For us the problem is always the background noise. As I have previously blogged, communication between us is a major difficulty and in a hall full of people almost impossible. Everyone ays it sounds like a poulailler - chicken shed!!
One problem with a group of people and wheel chair that we have found is that the group tends to talk over the wheelchair user. Being aware of this I try to keep my wife involved but it can be difficult. Any ideas to ease this would be welcomed.
Hi thanks for your comments. I was really worried about people talking over me when in the chair - they don't do on purpose but is really a physical issue. Before i went out i thought if that happens then i will speak up loudly and force myself to join in - but you have to be having a good day to do that really. Luckily for me that didn't happen on this occasion, but i'm sure it will in the future. Keep going out with your wife and mixing with others - i'm sure it does us good
I have to get over that barrier too.Good for you.According to others with Ataxia one of the worse things is isolating.It is easy to make excuses for not going out.
I have difficulty in speaking and now have a dreadful intention tremor and am embarrassed when eating out .
But I think we have to make decisions.Although I understand the use it or lose it brigade I have also heard hospital stories.It is a big psycholgical step going into a wheelchaair we have to think that we are safer and our carers can relax more knowing we are safe.
I think we know when it is right to go into a wheelchair.It was a brave decision.
I am weaker all over but safer.I think there are pros and cons.
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It's a disgrace!
Does anyone know of a belt-like apparatus, that provides the necessary force to the base of the back. 
Wheelchair or not, that is the question.
Help!
speed of deline
