I really believe that misinformation and misunderstanding is par for the course no matter what a persons condition, MS is no different really. I suspect it stems from the expectation of normal abilities and those standards 'automatically' applied despite knowing or any understanding that an individual has a condition that make 'normal' an impractical if not an impossible goal to even aim for.
Normal expectations are applied regardless of will or effort by an individual because normal is what they know and understand without thought or education. I've had too many conversations to count on the unreasonable expectation of 'normal' behaviour or abilities, placed on children who have a dx condition, that makes these often highly educated individuals expectations, understanding, beliefs and comments, down right idiotic!
There would be few people i've ever met that are out side neuro typical norms, that hasn't faced the ignorance of normal expectations and their dx'd condition seen as an excuse for their inability to do something, and not as the valid explanation of why they can't do that something.
Personally i've always been a fighter of sorts, tell me I can't do xxx and i'll be rolling up my sleeves and proving you wrong lol "you can't your female......you can't your too young.....you can't you'll fall over.....you can't your etc etc etc" lol its been my life work to brake down boundaries and not fit into type boxes and i'll keep doing it until i fall off my perch :D
Cheers..........JJ
ps there is something to that saying where theres a will theres a way, cause with out the will there just is no way!
I agree that the winner's comments were unfortunate. I do not think that people with these types of debilitating diseases can do what ever they want to do. I do think that they can do whatever they can do.
I have my limits, but I am as active as I can be. I really believe that we can help ourselves by eating properly and getting as much exercise as we are physically capable of.
Kyle
Well he did great tonight! And I liked that he talked a bit about what the disease is, and about his symptoms. He told his dance partner, if his legs go numb like they once did for three months, "we're doomed if that happens" with a chuckle. He talked about the stigma of disability with MS. He said that he is now physically able to do DWTS but it may not always be that way, so he doesn't want to miss the opportunity.
I actually thought he spoke perfectly on the topic. Not Pollyanna, not maudlin, but factual and realistic. Nicely done.
Here in Canada, our Amazing Race finale was last night, and the duo that won was a father and son; dad has early onset Parkinson's. He was pretty impressive in some of the challenges. His tremors were quite visible at times, but he completed everything and never complained. However when he won, I think it was a real disservice to other patients when he said people with Parkinson's can do whatever they want, if they get off their a$$es. Really not helpful to those who truly cannot do half of what he is still able to do. I expect at least some who doubt the degree of disability in their afflicted family members, friends or employees, will have had those doubts reinforced by such comments. Unfortunate.
Yes, but I fear that we will all be lumped into a group with expectations that if we all just tried harder we, too, could Dance with the Stars, climb Mt. Everest, or swim the English Channel. We rarely see MS portrayed realistically.
I truly get tired of being told that I look great when I fell like crap.
Q
Jack has not shied away from being a face for MS and this is a great chance to provide more information. I hope the producers will do this in a positive manner rather than using sensationalism to portray MS.
And I hope he lasts several weeks to gather as much interest as possible.
Hi Kyle, I saw that too and have to admit to be interested enough to watch an episode or two when the show starts.
His MS is bound to be mentioned frequently so that will hopefully raise some awareness as well.