I’m Feeling Bjorn Again This Christmas... Mmmm!

Hi everybody,

We had a wonderful Christmas Day, so as I can not go to the pub for the traditional Boxing Day pint I thought I would tell you about it.

It began late Christmas Eve when the last articulated lorry arrived with his delivery of yet more toys for the young master of the house. Louise and her mum were in a frenzy of wrapping, as were my brother and his girlfriend as they tried to wrap the un-wrappable object. I sat with my mum looking on from the lofty heights of my chair and remembering how much I used to hate wrapping presents, and thinking that this time I would not mind spending hours on the floor getting sore knees, Sellotape ripping the hair from my arms, and losing the rag with Louise because I think they are already perfectly pretty enough without the extra bow. Anyway, I have decided I quite like present wrapping now. But a word of advice to anyone in my position, for crying out loud don’t try to give them any kind of advice or direction.


Christmas morning, unusually for me, started early. Louise and mum woke me up with a cup of tea and biscuits and, having consumed said beverage, I was hoisted into the lounge and for the first time in a long time was lowered onto cushions on the floor. When Oscar had finished his breakfast, I was able to look him in the eye as he walked towards his mountain of toys and see the look of bewilderment followed by delight. I then was able to stay on the floor with my wife and son for just over an hour, revelling in the fact that Oscar could crawl over and over my legs as opposed to my having to view events from my chair. I cannot explain to you how precious that 60 minutes was, but I am sure you can imagine.

Christmas dinner was also a little unorthodox. Because of the rather large size of my chair, we were unable to fit around the table, so it was dinners on knees. I don’t think anybody minded because the aperitif, soup, main course and dessert were delicious. Thanks to Johnnie and Rosie for their efforts in the kitchen. Thanks also to my mum for being the provider of the booze.

Oscar had exhausted himself by evening and went out like a light. This led the way to some evening fun and frolics. We decided to watch a film, and halfway through I swear I was nearly dragging myself out the front door by my eyelids. Oh what I would not have given for an ejector seat in my chair. Mama Mia! Not another Christmas movie like Die Hard – Noooo!!

Seriously though, I personally have had a wonderful Christmas, and this little problem of mine just doesn’t seem so big when you are surrounded by people who love you.

I hope you enjoy the rest of your Christmas.

We send all our love to all of you,
Neil, Louise and Oscar

Neil had a very vivid vision of what he wanted for Christmas morning. He wanted to be hoisted down to the floor so that he could be at eye level with Oscar when he opened his presents. I was very nervous about it and even tried to refuse Neil his wish, I was too worried that it would kill him.

I was used to dealing with choking episodes in a sitting position but had concerns that I may not be able to get his body leaning forward if his legs were stretched out in front of him. When he was lying in his bed I just needed to press a button to get him sitting up properly. My dad and I went through every possible scenario of what could go wrong. We had to figure out what to sit him on and how to get him down to the floor. Neil’s time was now spent either in his profiling air bed, specially designed to relieve pressure, or his chair which could recline as well as tilt-in-space and was cushioned with the latest water cell technology. We didn't have anything pressure relieving like this to put on the floor, we only had the cushions from the sofa and we worried that they would slip underneath him. It would only take seconds for him to slip and hit his head, he couldn’t put arms out to stop a fall, the whole idea made me very nervous.

DSCF1777__320.jpgIn the end, I think we taped the sofa cushions together onto our non-slip bath mat and suctioned it to the wooden to the floor. We positioned his chair, with the brakes firmly on, so that his back could lean on the footrest and have proper cushioning. It took three of us a few attempts to maneuver him into an acceptable position. The further the hoist went to the floor, the more he became in a lying down position so we had to push against the weight of his body with his legs and lower the hoist at the same time so that the point of contact was not the base of his spine.  Eventually, he got his wish.

We kept Oscar from going into the living room until Neil was in place; it had been important to Neil that he saw Oscar’s face light up at the sight of his presents. If only Oscar had been a little older and showed the uncontrollable excitement of a five or six year old on Christmas morning, he would have ripped every present open in that precious hour. He did, however, do exactly as Neil had envisaged and crawled over Neil’s legs as he played with his new toys.

Neil couldn’t manage more than an hour before the pain became too much and he needed to be back in his chair, but that one hour at eye level with Oscar was very special for him. – Louise (2013)

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@ tweeted this page. 2013-04-08 00:12:00 +0100
Maneuvering Neil onto the floor for Christmas. Told from his perspective and Louise's. #Plattitude #MND #ALS http://www.iambreathingfilm.com/i_m_feeling_bjorn_again_this_christmas?recruiter_id=2
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