Harsh reality

[Nettie]

I totally agree 🥲 even my best mate struggled to understand me today 🥺 janette x

[GaryM]

Lizzie, I always say that I'd 'happily' live with my disabilities, but just give me my speech back!! To me, speech and language is the essence of being human.......

I agree so much Ellie. I only said this to my wife the other day. Get rid of all the bulbar symptoms and the disease would be much easier to cope with.

[Ellie]

I feel as if I have lost a big part of my personality. I can see I’ll have to find new ways of asserting myself!

Lizzie, I always say that I'd 'happily' live with my disabilities, but just give me my speech back!! To me, speech and language is the essence of being human (and I mean no disrespect to people who, for physical and developmental reasons, find speech and/or language challenging)

It is possible to retain one's personality without physically speaking. It can be hard for sure, and I certainly would not have won so 'easily' without eye tracking, but people don't need to fade into the shadows if using low-tech communication aids.

In fact, it can be an opportunity to redefine yourself, if you so wish 😁 If people's ability to speak starts to decrease, it helps if there is a corresponding increase in their determination...

Good luck, Lizzie.

Love Ellie.

[denise]

Well thanks graham 🤤 I think when you start trying to communicate you've got to be short and sharp. Get their attention. Don't go for long sentences otherwise they get bored. Im a very fast typist but would find it difficult to keep up a conversation . Let's be honest no one has time anymore. I suppose lock down has slowed a lot of things down.
the lady in the wheelchair just sat there. This was the hospital but she didn't do anything to get his attention. Think I would keep a handy walking stick to knock on the counter. How about a bicycle bell? 🤔

[Graham]

I can't imagine who Ellie is referring to, but one name is springing to mind if she is off the forum naughty step.

It gets worse when you can't type quickly and you have to leave many thoughts in the brain, uncommunicated.

[GaryM]

What I hate is when I signal that I can't speak people automatically think I'm deaf and stupid as well. 😠

Totally agree matthew55. I can't seem to get people to understand how frustrating it is not being allowed to contribute to a discussion. Certainly an eye-opener this becoming disabled lark. I loved conversation with friends and now say more to them on WhatsApp than when we meet in person (rare though that is). That ability will probably be taken before very long.

[matthew55]

I will sleep on it 😃x

[Lizzie]

I think losing my ability to speak has been the hardest thing. You lose a big part of your identity. For me, communication was at the core of my profession and “who I am”. Now, with people‘s impatience and pre-conceived attitudes to disability, I feel as if I have lost a big part of my personality. I can see I’ll have to find new ways of asserting myself! Any suggestions??

[Heather R]

Yes since my speech has been going, I really notice a change in attitude from some people. Mind you I have been a bit deaf all my life so am used to being presumed stupid, but if they think you're drunk as well...

[Ellie]

You must be sadly disappointed most days so 🤣🤣

[matthew55]

This is why I check the forum so many times a day. It's the only place that I can have a grown up conversation. 😃x

[Ellie]

... people automatically think I'm deaf and stupid as well.

And, if they deign to actually speak to me, they speak to me as if I were a 3 year old 🤬🤬

(mind you, I soon set them straight 😜)

[matthew55]

What I hate is when I signal that I can't speak people automatically think I'm deaf and stupid as well. 😠

[Barry52]

Yes the lack of clear speech annoys me and the impatience of some people. I have the sound of a claxon on my speech app which usually gets their attention. Another thing that irritates me is when people address someone in a wheelchair and they are standing fully erect. Although I am not a wheelchair user I think it is good manners to sit at the same level.

One may say we have come a long way to recognising disability but I would argue there is much further to go.

Barry

[matthew55]

It's one thing to choose not to speak but quite another not being able. Good luck and bon chance my friend 👍😁