MND support, fundraising, and the power of voice banking (Full Transcript)

[00:00:00] Speaker 1: So, the group that you saw today are the group of people that I regularly meet on a monthly basis. And they are the people in the local area of motor neurone disease. And so it is called the Motor Neurone Disease Southampton and Winchester Support Group. And there are groups like that all over the country. The purpose of that group is to provide an outlet for a few hours of one day. Basically just to try and put a smile on people's faces. Which, in our situation, is difficult. Very difficult. Jill's husband isn't here today because he's got a tooth operation. He's having a tooth extraction. Which he wasn't looking forward to. So we brought Jill up here today.

[00:00:51] Speaker 2: Hi, I'm Jill. I have Bourbon-7-D. This group is amazing. Good friends.

[00:01:01] Speaker 1: I was diagnosed with motor neurone disease in April of 2024. I find it valuable because I can go around and I feel as though I can talk to people who've got the disease. But it doesn't alter the fact that you've been diagnosed with a disease that has no cure, no operation. And the medical profession really don't know an awful lot about it, if they're really honest. They've no clue as to why I have it. The motor neurone disease can progress in different ways through your body. It doesn't affect anyone in any set process. So the lady we were talking about earlier has got the bull bar version. And there's nothing to say that I'm going to get it at all. But I might. But what can I do? What can I give back? What can I do for somebody else? From my point of view, I just had to take the optimistic route and go forward. Do the best I can for as long as I've got. And contentedness. That I'm doing something positive and somebody else is going to hopefully benefit from it. So the whole fundraising exercise is to basically pile money into the coffers of the M&D Association. Because it's a charity. And they're just constantly raising money to pour money into medical research. But it's a long process to go from where we are now to something that could solve motor neurone disease. And this is why the effort's needed today. For a little helps. So the money I'm raising at the moment isn't going to solve my problem. But it might solve the problem of people in 5 to 10 years time. And we're a long way away from that. It's going to take a lot of money to do it. But that's what's needed. And so my view is really that I've just got to carry on banging the drum. When this concept was even mentioned to me about 6 to 9 months ago. I thought, this phrase, banking my voice. What's that? And then it was explained to me. And then I saw people using those machines. And I thought, well, you know, people are advising me to do it. I'll go and do it. And I just think it just brings, probably bring a smile to some people's faces. When they can hear me speak when I'm not here. Or speak when I can't speak.

[00:03:40] Speaker 3: Alright, so this is page 1. So this is your banked voice talking.

[00:03:47] Speaker 1: We're going on a bear hunt. We're going to catch a big one. What a beautiful day. We're not scared.

[00:04:01] Speaker 2: Amazing. That is you.

[00:04:04] Speaker 1: It is just quite weird actually, just listening to myself. When I haven't spoken those words. It's just, can this be true? It's just spectacular. Because it is so powerful. And so meaningful. And I think resonates with anyone in this situation. Whereby the loss of a voice is really taking away. Taking away a tremendous amount of that person. But then to be able to continue to communicate. It's just gold dust, isn't it?