First of all, I would like to thank everybody for their support when I published my first bit of my blog. It was a tough decision to finally get started, I’d been thinking about it quite a long time and the positive comments have helped justify my progressing with it.
I suppose I had best get the messy bit out of the way first and update on whereabouts I am physically. I can still (though rather haphazardly and slowly) walk from my rise/ recline chair to the French doors using crutches in order to have a fag, eventually I get it lit and can just swing my arm up to have a drag, woo hoo. I might start to get pissed off if I couldn’t have a fag!! In order to help me eat I have got this contraption with pulleys and cams which enables me to lift my arm up to mouth height, unfortunately that is in the lounge and I can’t use it for smoking as I refuse to smoke in the house because of my daughter. As you can imagine when you arms and hands are knackered you start looking at this sort of equipment and ponder what else can this help me do………………. answers on a postcard please ;-).
I have not been robbed of being able to chew drink or swallow thankfully and my speech so far is unaffected. I have this software that converts speech to text and this is what I’m using for the first time to write this, without it it would have been Christmas before I finish this, lol. I apologise if my grammar is a bit crap but I’m sure it will get better as I use this more. The longest Part of the operation was trying to get the bloody headset onto my ear and get it to stay there!, I wish I had bigger ears it would probably help.
Anyway, enough of that. As anyone who knows of MND you just look at the positives of what you can still do so am not going to bleat and mourn the things I’m now unable to do. The one thing that I will admit to hating though is not being able to do is pick my daughter up and give her a hug. Bless her, she just climbs all over me and gives me a big squeeze. When I’m floundering like a tortoise on its back, she grabs my hand and tries to pull me back up which is the sweetest and saddest thing to see. For someone who isn’t even five yet her compassion, understanding and perception of one needs is phenomenal. In the morning she wanders into the bedroom and puts my tablet in my mouth and brings a drink of water without us ever having asked her to do so, she has just watched and understood what is going on and wants to help daddy. I cannot put into words how much my wife and daughter keep me going on a daily basis, they didn’t ask for this and they have taken it in their stride so unbelievably well. Anyone who has ever dealt with something like this will understand when I say it is harder on those around them than it is for yourself, this for me is finite however for them it is not.
Those who know me will know how much I love my cars, unfortunately I’ve had to get rid of them now and only have the purple monster left in the garage. The Beamer went at Christmas and that was a tough day and the end of the chapter, I do however have a mobility scooter in Lamborghini orange and a matching pair of indoor and outdoor wheelchairs! I always wanted to go to teach my daughter to drive when she got older however as this is not going to happen now then the next best thing is for her to drive the scooter with me. She loves going on it and thinks it’s great when I pick her up from school on it. She has become quite adept at driving it and thankfully it only goes 8 mph as once when we were driving it we veered off and ran it into a fence and rolled it, thankfully the wife was 100 m behind us and released us from the being trapped underneath it!!. Like the brave girl she is she just climb back on with me and we carried on. Every time I take her to the park on it the other kids think it is a go-kart and want to have a go. It is probably the coolest scooter ever seen and thankfully is nothing like the granny shoppers that are so prevalent, I just need to find a way of making it go faster as I would love to be the first person to get snapped by a speed camera on a mobility scooter!!
I’m kind of waffling but there is so much that has happened since I got diagnosed I could go on for ages. My last bit for today is a bit of toilet humour, literally. I have been waiting for the last four months to have an all singing and dancing toilet installed in order to recover a semblance of dignity in the area. So finally it got installed a couple of days ago and the literature states it is a nice warm rinsing wash and warm air dryer……….. where I live however we have very high water pressure and the water chamber had not heated up, so I will leave it to your imagination as to how far my eyes bulged out of my head the first time I used it. I’m not a selfish person and wanted to share the wonders of my new ‘clos o mat’ and persuaded my wife to give it a go I did however neglect to give her the full details…………. the look on her face was priceless and had me giggling for ages.
Due to my ineptitude this has taken nearly 2 hours to complete and I’m getting hungry, I would love to read any feedback or comments you may have and will hopefully have a further instalment shortly.
Take care all