I was diagnosed with MND in September 2008. Life expectancy is 3-5 years but half succumb to the disease within 14 months of being diagnosed. The disease slowly destroys muscles needed to walk, talk and eventually breathe. I'm still breathing.
Saturday 9 June 2012
Update
Colleen,may nurse from day hospice has been visiting me in IPU. She is so down to earth and a great support. Also from day hospice there is a standing machine. My theory was that if I could stand up maybe the forces of gravity could work and I would get a really good stretch. So I get strapped in and gently lifted to a half standing position( if you are a physio, especially Lesley and Kate don't read the next bit) I can't stand up fully because I have allowed the tendons at the back of my legs to shorten. I do like to lay in bed with my knees bent. Anyway it was a good effort and I have a couple of photos to prove that I'm still standing. My mum and dad was there to see this great achievement. I had great fun and hard work, it was worth it.
Penny my carer is coming to visit me on Sunday, so that is something to look forward to. Ellie will come in too. Let's hope she has been to the toilet before she comes in, we had a little accident the other day.
Dee sent me a joke book on farts, the little character off the EDF advert and a lovely card. Cheers Dee a great tonic.
I now have my own stash of freeze pops, ice lollies and ice cream tubs in the the bistro opposite my room. Now I will have to do some collateral damage to that over the weekend.
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