On MND and how strange the mind is

When only in his mid-40’s Doddie Weir was diagnosed with Motor Neurone Decease. Leaving to one side his dreadful dress sense and despite never having met him, Doddie Weir had always come across to me as a decent man and I felt sorry for the path he was being forced to follow.

Because my mother in law had been diagnosed with and suffered from MND for 2.5 years before dying, I had some understanding of the road he would be forced to travel. For my mother in law, it had been a hard path physically and I think especially for her, emotionally. Throughout the last years and months of her life. she lived with the almost constant fear of choking to death. It caused her great and at times overwhelming anxiety. I would like to say I wouldn’t wish MND on my worst enemy, but ........... Sometimes we all fail.

Not long after my diagnosis, I read an article that Doddie Weir had written for the Daily Telegraph, and the thought crossed my mind “it could be worse, at least I don’t have MND”.

And with that, the uncertainty worm began to burrow.

In a BBC interview, Doddie described what happened following the trapping of his left hand in a door, which led to his own diagnosis. Almost immediately, he said, he noticed a loss of power in his hand, which over the following months got steadily worse, until it had lost a significant amount of its previous power and had started uncontrollably twitching.

That was me.

Ok, mine was my right hand. I hadn't trapped it but, by twisting it, had over extended my wrist and finally, my hand wasn't twitching but shaking (especially under stress) but hey, let us not be pedantic, it was close enough.

I was convinced that I had MND.

It’s a strange thing the mind and it can play horrible games with you. But at the back of mine, still rumbling on, was my shock of the, to me, slightly less than rigorous manner of my diagnosis. Anything that haphazard had to be wrong,

Whilst trying to confirm my self-diagnosis, my research with Dr Google came up with the following stats:

• Parkinson's UK found that 26% of those with Parkinson’s had been misdiagnosed with a different condition before receiving a correct Parkinson's diagnosis,

• A Royal College of Physicians article stated that MND had a diagnostic error rate of 20% ie those with MND, were diagnosed with another condition.

With such a high rate of error in diagnosis, how could the Consultant have been so certain, so soon? With the smooth confidence of the ill-informed amateur, I decided they couldn't.

But what was I to do? I didn't want to have MND. Suddenly Parkinson's seemed just fine. On the day of my diagnosis a Neurological Physiotherapist had said to my wife that with my symptoms, Parkinson's was the best-case scenario. Only now had I started to fully understand the import of that. I needed to speak to my GP or Consultant.

But being a man, I decided to do nothing. Believing as men do that if you ignore your fears they would go away. As a word to the wise, if you try this and are married, don’t tell the wife, her respect for you, already low, will collapse further and you will find yourself on the GP’s doorstep anyway. Probably best to do the adult thing and go to the Doctors of your own free will.

You may even get brownie points.

I didn’t, time passed and I continued to ignore my fears, but fortunately, the medication started to kick in. The one true sign that the diagnosis was correct and I started to relax. I would have laughed at my fears and how silly they were, but I started telling myself that I hadn't really been worried and that I had known all along that I had nothing to worry about. 

And because of the meds, for a short period, I even felt almost normal. Not fully normal, but almost normal. Close enough.

Which is the best I can hope for these days. Not fully normal. But at least it's not MND.

Update - the wife wants me to clarify my comment in the previous post, where I said she didn't attend my consultant's meeting due to work. I am informed that as usual my memory was faulty and that would have been callous and what actually happened was she had a meeting to discuss our Son. 

She's correct about my memory!