Jamie Heywood, his brother Stephen, Born Slippy by Underworld and me....

Firstly I must point out that Jamie and his family are not knowingly related to me!

I met Jamie when we were both speaking at an event. We got chatting about stuff and started to swap experiences. I told him about my obsession with music and how I use it everyday for various reasons... and I was introducing this conference full of top level Pharma types to the joy that is Born Slippy by Underworld (big up to Underworld for getting the Olympic opening ceremony gig) Jamie went pale, and told me the same track was his brother Stephen's athem and it was top of his ipod playlist. Then came the story, and how Patients Like Me was born. PLM btw is another awesome site. Stephen got ALS, a really crap thing to have, no treatment no cure generally those diagnosed get 3 years..... the body is slowly stripped of every function, so I am to believe. Stephen Heywood was struck down in his prime. His brothers Jamie and Ben supported him and PLM was one of the good things to come out of it all. Stephen's profile is on PLM and you can see it on the system they use, a body icon and green/amber/red as parts of you slide. Users of the site use this tool to chart where they are, to make comparisons and to communicate especially to healthcare teams. It also provides fantastic data. On the day Stephen died his icon body was red from top to toe as he relied on full life support. However Jamie told me, Stephen kept another record, and that was about happiness, emotion, fulfillment, then he turned to me and said 'what colour do you think that was on the day he died' before I answered, he said 'green' .... If Stephen Heywood who lost his life to an illness more horrific than I can imagine can stay mentally 'green' then you bet, you bet I can, I will, and I sure as hell am going to help anyone who needs it to stay green too.

Staying green in your head is for me the single biggest 'treatment' you can have. Switch onto the power of positive thinking, motivation, spirit, joy, happiness. If you don't have a lot of that then I would really urge you, no god I implore you go get some..... what switches you on what lights you up what flicks your switch ...... stay green ...... like Stephen.

My sincere thanks to Jamie for his support and friendship

[Jupeter]

H-H, thanks for this. No matter how dark we feel on occasions, there are some very inspiring stories to bring us back into the light. There is always someone who is worse off than we are, and goes about life as though they haven't a care in the world.

[Joealt]

Word.

[Gansbru]

I don’t know if you saw my mention last night, but I was informed last night a friend of mine for over 20 years and remarkable photographer. I went with him to hear the results of the testing almost 20 years ago, as he was frightened. His worst fears came true, but he turned it around, taught photography to students, and we both thought that through our twisted humour and positive mental attitude we were going to beat his ALS, even as he drifted slowly in the arms of our friends and his family. He left us the day after we last spoke. For Darryl I’m still going to keep green.

He knew of how, like you, I was told to move on shortly after my dx @ 40, and it was his Skype chats that kept me going at the beginning, and we continued this whenever we couldn’t travel. I think my other friends were afraid to tell me of how bad things really were for him. With us humour would be from start to finish. Even voicemails were not sacrosanct.

I didn’t sleep well last night, but that is no surprise. My sleep regulator runs from can’t kip to full-on narcolepsy. Do you know what he used to do when I fell into it during a conversation? Bent over, dropped trow and sent me a pic from his computer of his backside, saying ‘this is my kiss to you, pillock!’.

I’m going to try my best to keep green going. He told me that I should hold onto hope and he was confident that someday love would come my way because I was too clever for my own good and clever is an attraction far more than my model looks.

Keep green, and I agree that I have been on many sites that just don’t cut the mustard like this one. Thanks to all for a new approach for the new year! G