SHEFFIELD VISIT

I have already written a short note on Facebook re my visit to see Prof Shaw yesterday. Sorry blog readers, today you are second! Basically I did all the usual pulls,stretches,breathing into tubes,blood taking,weight!, and talked with the prof. She had all the results of the extensive tests from my stay in May. ..and it's sort of positive news.basically the muscle strength in my legs has deteriorated. But I know that, that's why I use the wheelchair more and more ,otherwize I would simply just fall. BUT there has been little weakening of the rest of my muscles, ie from the weakness already in my shoulders and arms. She also said that Riluzole seems to work best(prolongs life) ,when weakness is limited to one main area,in my case legs. She also said that I should think of having had MND, at least from May last year as that was when I started limping. So I guess I am now over one year in! She did say that I must not be deceived, there is no cure, and there will be inevitable further deterioration. A salutary thought. Having finished the tests for me I was able to give blood for DNA research, and complete another info sheet re family history of MND.... None. I am in a lifestyle study having completed the activity study questionnaire. There is so much being done by Prof Shaw and the doctors into researching MND...thus I have decided to have shared care between Sheffield and Halifax. In no way will I put dr Mahmoud down, Halifax, he is wonderful and it is he who suggested prof shaw... So there is no conflict. The v difficult bit of the day, was waiting for transport, which didn't arrive till gone six. I got home at eight.... So have done little today! Can you blame me? Tomorrow is a green day, the day I get my green car! Hope the paperwork is now complete! I'll believe it when I actually drive it! I was told I would get car in a week to ten days, that was mid May... You see why I'm sceptical So HUG ME,IVE GOT MND