I have Motor Neuron Disease a rare disorder called Kennedy's disease blog on destination smart by teynhambees

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I have motor neuron disease a rare disorder called kennedy's disease

January 27, 2012 9:55 PM | Posted By: teynhambees
3 Comments | 111 Views
Related Categories: Life has changed!

I have a lovely fortwo silver smart with brabus pack...been on some lovely journeys including the smart festival last year with our other smart forfour brabus..

But life has a funny way of turning upside down and taking you on another journey. The 20th of January 2012 will always remain with me as a roller coaster ride without a ticket but experiencing every ride!

My wife and i drove her fourtour to Kent & Canterbury and parked her up not returning to her for quite a few hours.

I underwent every test and then some with a diagnosis of a rare disorder called Kennedy's disease a type of MND (Motor Neuron Disease), it only affects 1 in 40,000 people worldwide, so like our Smart cars I am unique!

I have been told i don't do things by half! I only hope that i can continue to drive my lovely Smarty everywhere but worry that i one day will be wheelchair bound and start to use the strength in my arms and as i have no power steering my little smart will be hard to steer! grrr....no power steering!

I'm already trying to figure out how to fit a wheelchair in to get me to work but hopefully that's a long way off!

I hope that someone at Smart will have some of those answers!

Keep following my progress with me and my little Silver Smarty and wave at us if you see me on the A2 to London from Faversham everyday to work!

Scott

http://www.mndassociation.org/

http://www.kennedysdisease.org/

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Bankrupt By Diesel Prices at 10:03 AM February 25, 2012

I hope that you are doing well & that you can find out for certain what is affecting you even if it's just for the sake of knowing & knowing how to make life easier for yourself. Good luck, keep your chin up. Perhaps it might pay you to write to Smart GB in Milton Keynes, see what they have to suggest, I'm sure they won't want to lose a valuable customer

teynhambees at 4:57 PM February 19, 2012

Update - I've had a visit from the local MND Team nurse last week and waiting for an O/T and Physio visit. Im already finding that the shopping wears me out and I spend hours in pain from the walk. Still waiting for my genetic blood test results which wont be back until the end of March. My consultant is confident it's kennedys but the blood test is the only conclusive test. We've had an offer to help raise funds from a local p/t trainer to hold a boot camp in whitstable, Kent. My just giving page as reached £177.50 in aid of MNDA and the story has been covered by the local press (thank you to the Kent messenger group). Perhaps all those smart car owners would like to join us at Seasalter beach on 14/15 April 2012. @ old geese thank you for advice but certainly had no response from Smart to the post I thought that they would monitor the site maybe not? http://www.justgiving.com/Scott-Sinden

Bankrupt By Diesel Prices at 12:15 PM February 19, 2012

I am sorry to read about your condition, I hope that it doesn't affect you too much, I wish you well. Having received such good service from Smart so far, I would be far from surprised that if you didn't get in contact with Smart UK, they would probably look into ways of helping you out along those lines, or possibly be able to offer you some advice, also ask your NHS advisory service, they also may be able to help. Good luck, take care

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