Friday 27 April 2012
My Eyegaze Video
This is a video I made with fellow MND sufferer Liam and his friend Bernard. It will hopefully feature on the MNDA's website soon. I have to admit feeling rather hypocritical regarding its optimist comment (having been publicly very critical of the MNDA for their awareness campaigns being focused on optimism, instead of the hideous nature of this disease) but I guess it's a price I am willing to pay in return for publicising what is achievable when only your eyes work. To counter the hypocracy, I am still badgering the MNDA to make a TV ad which will tell it straight with a realistic narrative and no mention of the word optimism!
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20 comments:
What you are achieving with eye gaze is really impressive and truly inspirational. I've followed your blog for a while and hope you keep it going. Thanks.
Steve, This is a fab video, I think you're allowed to do whatever it takes to get the publicity you deserve. Keep badgering!
wow. Steve, fantastic video, very moving ... very impressive and yup very important and that is not said glibly.MND have to take this and HAVE to do something good with it.
HI Steve, this certainly comes across as full of praise for the 'eye-gaze' machine. Of course this machine should be praised but while there is an optimistic tone, I think a lot can be read into the unlying message. I agree that if you, when you, make the TV ad, that you tell it straight. Could I suggest that if you make another video that when you say the names of the disease that they are also written, to clairfy?
Good luck with that campaign and I hope this is watched by many. What is MMD's resistance?
Wow! What an inspirational message. Thank you, Steve, so much for sharing this. I appreciate that, when adversity strikes, most of us 'cope', but I am overwhelmed by how positive you are. Your boys have a most wonderful dad.
Amazing! Well done to all 3 of you. I'm sure you've already considered it but how about making a TV ad and rather than trying to get expensive airtime go for a more viral approach? xxx
Thank you for doing that and I completely understand how you feel about the "optimistic" need in the video. Having a neurological disorder myself I know important it is to be absolutely realistic. The disappointment that comes with wanting to believe in things that then do not happen is devastating. It;s a hard lesson to learn. Finding ways to live with such debilitation is the only thing we have. The "Eye -Gaze" no doubt has been a welcome aid to your life and it is a remarkable machine. However, that said the realities of your daily struggles is the real truth that needs to get out there to help research to push for a cure. I'm thinking of you and your family.
You are an inspiration to all. I will show this at my school to make more people aware of this terrible disease. Thank you for sharing.
Maggie x
Nice to meet you :) looking forward to reading from you !
Wow, such an amazing video. Although it is certainly optimistic, it also shows the limitations and difficulties of everyday life for you. Your gorgeous smile is so bittersweet as it gives a glimpse of Steven before MND. Very brave of you to make this video. I hope that it is used effectively and perhaps as a starting point for some more "hard-hitting" messages from teh MNDA. Tracy and the boys must be so proud of you. Christine
Gosh Steve that's so poignant. Your facial expressions are still incredibly meaningful on film. People with MND will feel inspired by you which is invaluable. Publicity regarding the hideous nature of the disease is a separate issue. I'm in awe of your resilience. Laura
OMG. Forget wannabe singers - this should be on you-tube getting thousands of hits. You're a technical genious so upload it and get the hits world wide! (Still handsome!!!) Daniela
An amazing video - an inspiration to all. I feel lost for words. I hope you continue making videos and keep pushing the MNDA to show them.
Thank you for sharing a great video... I will share your video also.. :-) Wishing you all the best..
Steve,
Impressive, moving and educational video. I hope it gets the attention and makes the impact it deserves.
OH! Nice!,,
Hate to say it Steve ... But that's a very optimistic film! Well to be more specific, maybe I should say hopeful! Thanks for all the work and effort, it helps enormously.
Roch
Great video,given me some wonderful ideas. Bill
Steve, thanks for making this video. You mention thinking that it was too optimist ... and perhaps for folks with no exposure to MND/ALS it'll come off that way. But to me - other than being glad for the miracle of eye-gaze technology - it isn't especially optimistic. It effectively conveys what your life has become through the onslaught of this disease. I don't even want to show it to my PALS yet ... he's still able to get around without aid, albeit much slower and painstakingly. He can use his iPad for text-to-speech now that it's getting harder to make himself understood. But he tends to be discouraged when he sees where his life is inevitably heading. So I'll save this for him for another day.
Thanks again.
Ms. Kat from PLM
What a motivational video. Yes it does deserve more exposure, I agree. Thank you for all your hard work, it keeps me motivated.
Ross
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