I have got to be quick...

Hello, I don’t have much time.

You see, I am under the vicious guard of armed spouses and nurses who are under orders not to allow me to speak. The Christmas and New Year period has seen an unprecedented number of visitors and an extreme amount of fun being had, and that this has resulted in my being a little weary today. Absolutely knackered actually, so much so that I could hardly speak this morning. So actually the spouse and nurse combo is probably justified.

Nevertheless, I just wanted everyone of you who I did see, speak to, or receive a message from over the last week or so absolutely and unequivocally made my New Year. Not one word from my mouth said in conversation with any of you either off or on The Plattitude do I consider in any way wasted. That’s all I wanted you to know, that I love speaking to all of you, so don’t spare the conversation on my part.

Maybe next time we coordinate meetings when the wife and nurse combo are due to be out!

I will send some more thoughts tomorrow when hopefully sanctions to be lifted.

Until then and from my bed,
Much love,

I can’t remember how or when we switched roles. Neil had always been the strong one in our relationship, the decision maker and organiser, and I was happy to trust his judgement. At some point I had to take over and he had to let me. He knew that there would be a whispered confab in the kitchen between myself and the nurses so that I could fill them in with any changes, but they would always keep an eye on me too and ask about Neil’s emotions. I think this post was a nudge of acknowledgement and a hint of rebellion!

Neil made out that we were being strict with him, but in reality, there was no telling Neil how to live the little life he had left. He knew exactly what he wanted to do with it. The visitors he mentions here were summoned to his bedside, from far and wide. He knew that talking was going to exhaust him but he wanted to see people, he didn’t want to hide himself away.

We never knew if Neil had lost abilities due to progression or exhaustion, so when he talks here of being hardly able to speak that morning, we didn’t know if it was simply the morning after, or every morning from then on. I had probably lost count of how many times that question had been asked – and sadly in Neil’s case, it was nearly always the latter. We desperately wanted him to get a good rest in the hope that the next morning there would be no speech problems. Loss of speech was Neil’s line in the sand. – Louise (2013)

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@ tweeted this page. 2013-04-16 21:32:06 +0100
Neil has to be quick before the "vicious guard" come after him... #Plattitude #MND #ALS http://www.iambreathingfilm.com/i_have_got_to_be_quick?recruiter_id=2
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