Tuesday, 28 September 2010

"I can't imagine what it is like..... "

There are times when I wish other people could "experience" MND for a day. It isn't out of any sadistic tendencies but just to give people an insight of what's involved. I appreciate that many of the illness' effects are blatently apparent but there are so many sub-issues too numerous to list that would become apparent if you lived MND for a day or two.

I have sometimes, during the many thinking hours available to me, considered ways to recreate an MND environment for someone. Unfortunately most are impractical or wouldn't really mimic the real thing. For example, wearing a hat weighing 10kg to cause your head to flop around under any lateral forces. Tieing 15 kg weights to your forearm to create the necessary difficulty when trying to scratch your nose. Obviously plonking oneself in a wheelchair would emulate much of what I have to contend with, as long as you weren't tempted to nip out occasionally Little Britain style, but most people don't have wheelchairs to hand so again this isn't going to work.

Stuffing scrunched up paper in your mouth would probably give you a similar challenge in terms of communication skills but you could probably only tolerate that for a few minutes. So my MND Experience Kit has not got very far and certainly isn't ready to go on Dragon's Den yet.

However, not being one to give up on something, I thought of a way for somebody to experience one and probably the singularly most infuriating facet of this disease, but it will only work for those of you with young children.

Apart from not being able to participate physically with the boys, having severly limited communication with them has become one of the worst aspects of having MND. Obviously in terms of their day to day care, Tracy has to do the vast majority of it. But there are still occasions when Tracy isn't around and I need to intervene in something they should be doing, but aren't, or vice versa. Also, as I have discussed in previous posts, you don't normally have more than an hour passing without some argument erupting. But more importantly than these negative communications, it is the inability to interject in other conversations with them. If I know they are returning from an activity I can prepare some comments about whether they enjoyed it etc. But I can't respond to their answer because they will be kicking a football in the garden by the time I am typing my second word.

All those little snippets of information during the day that kids pick up through afirmation or correction of what they say is largely absent. Jake in particular, through the course of a day can authoritively announce 100 "facts", the vast majority of which he makes up. The other day when we were in the car Jake authoritively announced that Ferrari and Lamborghini were in fact the same car made by the same company but just had different badges. Now I know that it wouldn't be the end of the world if he goes through life not knowing that Ferrari are owned by Fiat and that Audi own Lamborghini, but any self respecting bloke should do and it is my job to ensure he does!

Now obviously I could try and remember all the things I want to say, type them all out later before sitting them down for a daily lecture but by then I will instead be frantically spelling out "guinea pigs can't swim" as they dangle them over the pond.

So to go back to the original point of this post and for the benefit of the many people who have said that they can't imagine what it is like, here is something you can try that will give you some insight.

When your children are around try this. Designate a two hour period where you only communicate by writing notes to them. You must write in capital letters to achieve a similar writing speed. You can nod or shake your head for yes and no responses, but no pointing at things for assistance and no reverting to speaking when things get a little chaotic. Obviously no physical intervention and for maximum effect try it around bathtime or mealtime. I don't really expect anyone to try this but if you do let me know how you get on!


Nursie said...

What!!, guinea pigs can't swim!
Oh shit now I know why mine don't like bathtime.
Take care mate,

P.S. You are still not forgiven about the paint job comment!!

Carl said...

Hi Steve
Have been reading your blog over last few weeks (sorry should have left some comments before) - think this a great idea. As you say above, we can never really appreciate how difficult it must be to cope with this disease, but this does give some real insight into the kind of challenges you must face. Your strength and determination in dealing with these is inspiring.
I may try your suggestion above on Lauren and Samuel.