Doddie Weir

[Barry52]

Good morning friends.

I thought I would share this news story and video broadcast by the BBC. The video is an hour long but I found it inspirational how Doddie tackles life with MND in the same way he tackled players on the rugby pitch.

We should also be grateful that his charity has raised £4m for MND research and support for patients.
https://www.bbc.co.uk/news/uk-scotla...tland-50561575

I hope the sun is shining where you are as it is here.

Love,
Barry

[ccinjersey]

Hi Barry

That's a powerful article. You can tell the man is an athlete by the way he speaks, he has that winning, fighting attitude. I hope it carries him through for many years to come.

The cure will come, it has too.

CCxox

[Terry]

Hi Barry,

Thanks for that, I never knew that he had Mnd. What a fabulous amount to raise and it is nice that he has spoken out.

Love Terry

[Gillette]

Hi Barry

Thanks for posting that. It is wonderful that he is raising money for and, just as importantly, awareness of MND and that the BBC have been following him.

[nunhead_man]

Good afternoon all

Yes he is being a great supporter for motor neurone disease research - some of his money is going through the MND Association for that purpose

There was some chat on MND Warriors (Facebook) about Dodi's physiotherapist suggesting he was able to get Dodi to build up his muscles, including the ones that were affected by MND - and of course there were others there pooh-poohing it.

Is anybody else noticed this?

[Terry]

Hi Andy;

He must have a slow type of Mnd, perhaps like me. I think that I did manage to build up some muscles but they have been gradually going over the last seven years.

I must say that whilst exercise is generally good, trying to do to much by pushing yourself is probably bad for you.

Many of us never get much chance to even try to do much because of the rapid onslaught, etc.

Love Terry

[Onein300]

Good afternoon all

Yes he is being a great supporter for motor neurone disease research - some of his money is going through the MND Association for that purpose

There was some chat on MND Warriors (Facebook) about Dodi's physiotherapist suggesting he was able to get Dodi to build up his muscles, including the ones that were affected by MND - and of course there were others there pooh-poohing it.

Is anybody else noticed this?

Yes it is a great programme. It was a chiropractor and not a physio, and yes I think it was a bit odd.

Can you rebuild muscle? Typically not, in average als where lower motor neurones are disappearing at the same time as upper motor neurones.

But everyone is different and upper and lower motor neurones degenerate at different rates in different people.

As neurones degenerate we believe that new connections can build from local surviving neurones. This is called collateral sprouting. Eventually they will run out and it can’t occur. But I have no doubt you need to keep moving and if you exercise as much as you can, it helps. Can it reverse? I don’t believe so in a typical case.

The consensus now is that exercise helps maintain us well as you possibly can. The old advice about not exercising is now way out of date. There have been exercise trials and the rate of progression decline has shown to be reduced.

Anything Doddie has rebuilt is almost certainly from his exercise regime and not a chiropractor in my view.

[Kayleigh]

Thank you for sharing the very interesting article with us Barry.

Your post reminded me of a newspaper article I read in the Scotsman, concerning an experimental drug that Doddie paid privately for in the USA - which, in his case, might have contributed to his slower than predicted rate of progression?

http://https://www.google.co.uk/amp/s/www.scotsman.com/news-2-15012/doddie-weir-slams-nhs-after-being-denied-access-to-mnd-drug-1-4679776/amp

The NHS wouldn't fund the treatment because 'benefits did not outweigh the risks' but I don't suppose Doddie agrees with that decision, especially in light of his current capabilities.

I don't know if clinical trials of Masitinib for ALS patients have been completed - and so there might not yet be conclusive evidence about how effective it is at slowing progression of ALS?

Love
Kayleigh

[Barry52]

I know that exercise is impossible for some pwmnd but I believe like Terry and Lee (aka onein300) that if you are able to perform any form of exercise, within your limits, it is valuable.

Kayleigh, the masitinib treatment Doddie sought in America is due to start phase 3 in March next year. Results from phase 2 are encouraging. We all progress at different rates and Doddie had/has an active lifestyle.

I would like to know more about the wet room pod he installed as I know many people on this forum have issues with space in their home and this looks like an ideal solution. It could easily be installed in a garage where nobody stores a car these days.

Barry

[jaffabeach]

Yes it is a great programme. It was a chiropractor and not a physio, and yes I think it was a bit odd.

Can you rebuild muscle? Typically not, in average als where lower motor neurones are disappearing at the same time as upper motor neurones.

But everyone is different and upper and lower motor neurones degenerate at different rates in different people.

As neurones degenerate we believe that new connections can build from local surviving neurones. This is called collateral sprouting. Eventually they will run out and it can’t occur. But I have no doubt you need to keep moving and if you exercise as much as you can, it helps. Can it reverse? I don’t believe so in a typical case.

The consensus now is that exercise helps maintain us well as you possibly can. The old advice about not exercising is now way out of date. There have been exercise trials and the rate of progression decline has shown to be reduced.

Anything Doddie has rebuilt is almost certainly from his exercise regime and not a chiropractor in my view.

thnaks for posting

[nunhead_man]

Hi

As neurones degenerate we believe that new connections can build from local surviving neurones. This is called collateral sprouting. Eventually they will run out and it can’t occur. But I have no doubt you need to keep moving and if you exercise as much as you can, it helps. Can it reverse? I don’t believe so in a typical case.

The consensus now is that exercise helps maintain us well as you possibly can. The old advice about not exercising is now way out of date. There have been exercise trials and the rate of progression decline has shown to be reduced

Thank you for that and for introducing me to the term "collateral sprouting"!

Do you have any references to the exercise trials that reduce the rate of progression?

[Barry52]

Hi all,

For those who missed the interview with Doddie, Rob and Stephen today here’s the link.
https://youtu.be/SnZQms-KAGI

Barry

[Hayls]

Thanks Barry