No Laughs Here I'm Afraid

I have always tried to tell it like it is on the blog. And this entry won't be any different. Although, other than venting on here I don't constantly bitch about things, I also won't just answer "fine" if someone asks how I'm doing. I will tell them it straight and if they would rather not know, they won't ask again. I was asked this question last night by friends we had over, and despite spending 5 minutes writing my answer, it still only brushed the surface of my current outlook on life. So this blog entry is what I am going to refer anybody who asks in the foreseeable future.

I am sorry that it somewhat destroys the image many of you have of me; coping with MND with stoicism, unbeatable determination and spirit. The fact is at the moment I have simply had enough. Nothing dramatic has changed, not even anything significant enough to affect my Functional Rating Score (FRS), but subtle changes in several areas have had a compounded effect. The FRS is what I and the medical profession use to measure the disease's progression. When diagnosed in 2007 I had a score of 46 out of 48. Last January it was at 28 and this January it is 13. Technically it is possible to be alive with a score of zero but I also know people (one personally) who died with a score in the mid twenties.


The fact that I am writing this while Tracy and the boys are out dog walking with friends exposes the first significant new problem; insufficient strength to use the controller on my outdoor wheelchair, the singularly most important bit of equipment after the eyegaze system. Trying to find a solution such as a lighter controller has proved impossible so far, and looking at replies to emails you would think I had asked to land my wheelchair on Mars. This could well prove to be easier. My enthusiasm for pursuing it further is running out in the knowledge that any solution will cost several grand, take two months to get and will be unsuitable two months later.

Our cruise isn't for another 4 months and I should be looking forward to it but the thought of having to be pushed around by the carer everywhere is simply horrible.

I won't be able to take myself out when the weather improves, a situation which I had suspected in October would happen. Other developments are less obviously significant. Movement in bed has almost completely disappeared. I can no longer drag hands up to rest on my chest, which is the most comfortable position to go to sleep. I woke last night a little short of breath and felt almost completely paralysed, I couldn't even move my head to operate the backrest recline control with my nose.

Being put to bed at 9-30pm, often before even the boys have gone up makes me feel like I am living in an old people's home, or like a naughty boy sent to bed early.  It was my decision to have external carers and I am still of that view, and the disadvantages are outweighed by the benefits for both me and Tracy.

We had friends over last night, we don't see them very often and it was nice to see them but I can't pretend I enjoyed it, I just don't seem to be able to 'make the best of it' anymore and being forced to go to bed two hours before they left actually seemed an easier option. Seeing Daniel giggling with excitement as David ran around with him on his shoulders should have made me happy, but I just felt bitter that it wasn't my shoulders he was on.

If you are reading this David, its my problem, not yours; so don't not do it next time.

But the sum effect of everything is difficult to bear at the moment as I just can't focus on much that's positive. Since starting writing this an hour ago, 50 people in the UK have died. Some will have been sick or old but others will be younger than me and will have got out of bed this morning, expecting to be getting in it again tonight. So I guess I should be grateful that today I am not one of them, and at this precise moment I am, but sometimes these days I am not always so sure. And the thought of in the near future having a ventilation mask, requiring two carers to move me and losing the final ten percent of any muscle strength doesn’t give me much reason to expect anything different.