A letter regarding my Duchenne Muscular Dystrophy Diagnosis, which failed to find any mutations in my gene sequence.
An old friend recently pointed out to me a rather cool camera called the GoPro Hero 3, I have been wanting something to take better and more stable videos now I’m going out (I was getting complaints about people getting seasick watching my phone ones), so this seemed ideal.
We took three of our dogs, Mya, Kara and Peppa for a nice little walk down the road and a country footpath
A few days ago I was on Twitter (nothing new there) and noticed a Tweet to me with no avatar, I looked and saw it said this Nesta Roberts @NestaRoberts @Daniel___BSc http://www.facebook.com/nesta.roberts.5 You’ve inspired me! Please check it out!! http://www.facebook.com/pages/Nesta-Roberts-Aesthetic-Nurse-Practitioner/276450962460971?ref=hl Now me being me saw that it said I was inspiring, had no avatar[…]
Well I’ve been busy building up my stamina in the new wheelchair, I’m getting there, each outing is slightly less stressful and I’m going further each time too, the next big step will be using my van, it has been a long time since I’ve been in a vehicle and lack of control triggers my[…]
I haven’t been totally slacking off though, my great friend Kylie, from Not Even a Bag od Sugar, convinced me to write a couple of open and honest articles about myself and Duchenne for her blog. I really am glad I did, I have had such amazing feedback and feel the articles may actually help[…]
As usual I have been slacking with posts, the main news though is I have my wheelchair at last, not thanks to wheelchair services but to charities and lots of very kind people donating. Here are a couple of news articles about it – Echo News Article : Success for man who is able to leave[…]
As you probably know I am trying to raise money for a new wheelchair, the NHS are still being stubborn so my neighbours have offered to set up a fundraising event, it has got much larger than I expected and they are doing an excellent job. I decided I’d tweet some of my followers from[…]
As you all know I am trying to raise money for a new wheelchair, the NHS are still being stubborn so my neighbours have offered to set up a fundraising event, it has got much larger than I expected and they are doing an excellent job. I decided I’d tweet some of my followers from[…]
After a lot of wrangling my advocate from the Muscular Dystrophy Campaign managed to get Gloucestershire Wheelchair Services to consider giving me a wheelchair voucher, this was turned down originally as my “needs may change within five years”, this was based purely the Occupational Therapist’s and Rehab Engineer’s opinions, they have no medical training and[…]