Watching the TV at breakfast I saw some of the presenters doing the Ice Bucket Challenge. That was brilliant, but they seemed reticent about mentioning it was for MND, even saying it was for cancer at one point. No, sharing this craze was started in the US by a baseball player called Pete Frates, who was diagnosed with MND aged 27. He decided to use the idea to help raise money for ALS/MND. Because of the anomaly with the names, ALS in the US and MND here, the connection wasn`t initially made and it was high jacked by other charities. MND gets little enough funding, so it did irk me a little that they weren`t pushing that it was for MND more. Still Ruth Langsford was challenged and she did it live on `This Morning`so that was great too. The thing that really cheered me though was seeing so much positive stuff on social media, so many challenges happening, the word was spreading, it brought tears of joy to my eyes. Over $15 million has been raised already in the US in just over a month , which is amazing. Long may this continue, It`s about time this awful disease was heard and understood and got the funding it deserves.
On a more practical point, Chris`s new wheelchair arrived today. Now I saw the physio measure him, but this wheelchair is huge, Chris could fit in there twice !! I think they just brought the first one they could lay there hands on. Guess I`ll have to give them a ring tomorrow. Oh the joys of MND.
Here are some facts about MND.
There are four main types.( All are terminal )
Amyotrophic lateral sclerosis (ALS) affecting the upper and lower body.( Chris has this)
Progressive bulbar palsy (PBP), mainly affecting speech and swallow.
Progressive muscular atrophy (PMS) which is much rarer and slower I think.
Primary lateral sclerosis (PLS), mainly only affecting the lower limbs.
(I believe all progress to the same end result.)
Info from the MND association web site.
