Tuesday, 25 November 2008

How Does It Feel?

Imagine having a severe disability, severe enough to require a wheelchair, and yet not be able to tell anyone what it feels like because of another unrelated disability. This is the scenario presented to me by fellow blogger One Sick Mother, whose friends son suffers from both Muscular Dystrophy and Autism. OSM wrote -

Stephen,

The main reason I follow your blog - apart from the quality of the writing - is because a real-life friend of mine has a 13yo son with Autism and MD (I don't know which type). His name is *****

Recently, my friend complained that there is little information out there that she could find on MD (lots of stuff on Autism). Yes she can find the medical information and the all the impartial technical stuff. But how does MD *feel*? She doesn't know that and ***** cannot really tell her. He can talk, but like many Auties, he cannot express his feelings properly. She doesn't know if he is hurting or just tired.

So I was wondering if you would be able to point us to some ... inside information on MD, which may help prepare C to prepare *****?

It's just a thought. Thanks in advance for any help you can offer.

One Sick Mother


I replied -
Hi OSM

I hope you are feeling better. (see I read your blog too).

Eek! Autism and MD. That's a combination I've never come across before. The British Muscular Dystrophy Campaign site is pretty good. I'm pressing for a blog section so people can share their personal experience.

Would you mind if I address the questions you raise on my blog? Can I quote your message or would you rather I not mention your friend directly?

Remember that MD is an umbrella term for a huge range of conditions. My experience may be completely different to *****'s.

Let me know what you think.

Look after yourself,

Stephen

OSM replied -

Thanks for the prompt reply.

I am feeling a good deal better thanks. Funny how a cold can knock the stuffing out of a person who performs their own chiropractic adjustments. I suppose it is all relative.

I know Autism and MD is quite a combination. Actually it was because of the Autism that they found the MD pretty early. They were going to one of these cure-Autism-or-go-broke-trying-with-the-cunning-use-of-quackery doctors when blood tests showed some abnormalities.

Considering all they deal with, they are doing well. They just got *****'s first wheelchair, which I know was a blow for them. I will point her to that site. Like many Americans she does not tend to look outside the States much for stuff.

Yes I understand that there is a vast range under the term MD. Kind of like Autism or PDD, I expect, which covers everything from Rainman to Einstein. I will be seeing C in a week or so and I can ask more specific questions then about types and subtypes etc.

I don't mind you addressing the question directly, I think it is relevant to a lot more than just this case, just please don't mention ****'s name.

Thanks again,

OSM

I share this exchange of emails by way of explanation for the next post wherein I will discuss what it feels like to have MD.

On another issue altogether...

Polly was walking the boys to school the other day and Sam was moaning, “Why do we have to walk?” Polly gave her stock reply. “We're saving the Polar Bears' houses from melting.” Matty, whose class last week had had a visit from a meteorologist joined in to explain. “Cars create gasses that cause climate change and that's melting the snow around the North Pole where Polar Bears live.” Polly was pleased that he had taken the lesson on board. “The world would be so much better without cars,” Matty continued. Then added thoughtfully, “or greenhouses”.