I would like everyone to take a few minutes to link to the South Pole 2008 expedition being undertaken by Doug Oppenheim and Jeremy Rogers. Today is the day they leave.
Throughout all of the pain of the last few months, one of the most upsetting things is knowing that there still a lack of awareness and understanding of MND and exactly how destructive it is, not only for the sufferer, but all those around them.
It’s the disease that most health professionals say they’d least like to get. It’s the most cruel and undignified end.
It has been explained to us that part of the problem in funding research for MND is that it’s not financially enticing to the drugs companies as life expectancy is, on average, just two to five years from onset and it is in every case fatal. So, to me, it literally feels like someone is putting a price on my husband and son’s lives.
Doug and Jeremy asked us to write a short case study for them to help in their fundraising efforts for the Sheffield Institute of Translational Neuroscience (SITraN), and we were only too happy to share our story. It actually felt like we could do something to contribute to finding a cure and alleviate some of the frustration. The Sheffield Institute will be the world’s first standalone institute dedicated to MND, so it is very important to us to help get it off the ground.
I know some of you out there are looking for a serious way to contribute and I know you have the imagination, skills and contacts to raise more than a ‘charity tray-bake’ amount, so lets see it! I won’t go on about the specifics, you can see them all at www.southpole2008.org [no longer online – Ed.]
Wishing Doug and Jeremy a whole bunch of luck,
Louise, Neil and Oscar
We were really pleased to be asked to get involved in promoting this expedition. At last it felt like we could be involved in something tangible that could potentially raise a lot of money and awareness.
Neil asked me to write the case study for Doug and Jeremy’s information booklet. It needed to be done at a time when Neil was unable to type and he was suffering from constant headaches due to his oxygen saturation levels dropping. He was too tired to concentrate on dictating what he wanted to say. It was before we had the ventilator.
Rather than turn down the opportunity to help promote the expedition, Neil told me roughly what he wanted to say then sent me down the hall to the computer to write it. He was not, however, too exhausted to be a harsh critic of my writing skills, squeezed into the few minutes I had between cooking, cleaning, washing, feeding, lifting and toileting the pair of them. I was sent down the hall for re-writes at least four times! Again, Neil’s determination was one of his finest qualities.