hi all, it seems an age since my last batch of inane drivel and rumblings. I have finally got things organised so I can access my study where the software is located to enable me to waffle for a while. A lot has been happening in the last month and I will hopefully give you some insight into what has been going on.
Some of you may know that once I got diagnosed I joined the local branch of the MNDA in order to try and help others who are in the same coracle. Last year some friends undertook a mammoth 24 hour kayaking event to raise money for the local branch who do fabulous work across the county. Essentially, 8 lads paddled for 12 hours on an hour on hour off basis, this was a truly magnificent and humbling thing to see and we raised over £4000 for the charity. We even had one person who couldn’t swim and had never been in a boat before!. We had amazing support throughout the whole time and it was topped off with a very emotional moment when they manhandled me into a two-man kayak and I went on the final lap with them. Everybody involved in the event did an amazing job and I will never just thank them enough. Hopefully this year we will endeavour to do something a bit different again………………
I have also had some tremendous support from my previous work colleagues who raised over £750 last year by having a dress down day, raffles, cake bakes and various other bits. This is an event that they are replicating this year and by the looks of it it will be bigger and better still!! The work put in by people to organise and the prizes that people have donated for the raffle has been truly amazing and I just want anybody to thank everybody for everything they’ve done :-).
In my last post I outlined what was happening with my breathing, I have now been using a bipap ventilator at night so that I get more oxygen in and hopefully better sleep. This is done by it producing positive pressure which blows the air down your throat and into your lungs. It takes getting used to having a mask over your face while you sleep, though some would say me in a mask would be a great improvement ;-). I also have what is called a cough assist which effectively blows high-pressure air into your lungs and then sucks it back out again, (as I now have insufficient diaphragm or intercostal strength to cough and get snot and gunk out). the house is slowly filling up with assistive technology and gadgets which make life a lot easier. Another toy that I have been using a lot more of now is my indoor wheelchair, sadly my legs no longer wish to support me for very long or carry me more than a few feet when walking with crutches. I must say, that I am a reasonably proficient driver of the 200+ bhp car but trying to master a 4 mph electric wheelchair is a bleeding nightmare! I have battered and taken chunks out of doorframes and doors, run into things and squashed my toes against the foot plates and run into or over people’s feet! My four-year-old eventually decided enough was enough and has taken to giving me verbal commands to help me manoeuvre where I needed to go to. She loves sitting on my knee and controlling the joystick, she can now manoeuvre us both all the way around the house without hitting anything and most impressively she can reverse the chair and has grasped the concept that you have to steer the opposite way when going backwards, hopefully she can teach the Mrs the same :-).
My daughter wanted to go out the front the other day to play on a bike, so whilst the Mrs cooked the tea we popped out with me in my electric chair. Like a true daughter of mine she wanted a race, we lined up at one end of the path and had a race to the lamppost. She beat me handsdown by a long way. She decided we should have another race, so off we go and this time she went really slowly and let me win. It is hard put into words how proud I am to have such an amazing daughter who can show such complete understanding and compassion in this situation and takes so much pleasure in making others happy. I know that this is something that will make her incredibly special as she gets older and will stand her in good stead as he progresses through life, it will be the perfect balance to the amazing intellect she’s already showing. She has now managed to work out the way of lifting both my legs at the same time and putting the foot plates down on my chair and then putting my feet on the plates so they’re not dragging on the floor. She even saw the Mrs giving my toes a stretch and squeeze and just grabbed my other foot and started doing the same. It is the sweetest thing you can ever hear when she says “I’ll look after you daddy”. I could talk forever about the most wonderful things that my wife and daughter do to make my life as easy and comfortable as possible, and make me smile but it is hard to use voice software with a lump in your throat.
We’ve had a few days out more recently as the weather has got better, and have been making the most of our National trust membership. I must say that I was mightily impressed at Belton house when they said I could go in the house as there were no ramps!. I waited at the bottom of the stairs and the lovely tweedy lady drove a contraption with a single mini tank track attached down the stairs………. I was attached to it whilst in my wheelchair and tilted backwards to 45° and off it went back up the stairs and deposited me safely on the ground floor. Another great example of simple technology that makes a huge difference people. A word to the wise if you ever find yourself in a wheelchair is try to avoid cobblestones at all costs!! as they shake your fillings out and bouncing compresses your spine. We found this when we went to a wedding in the uphill part of town and had to go through Castle Square in a wheelchair.
It amazes me sometimes when you go to places and they say it is disabled / wheelchair friendly, you can tell that they have only done a token gesture and have not actually tested it with a wheelchair otherwise they would realise that they are pretty inaccessible. Surprisingly, some of the most inaccessible are the high-profile restaurants, I won’t name names but suffice to say “I’m not loving it”.
I have so much more to say but will leave this for another day now, however my final bit is a follow-up to the alphabet previously blogged, it was a bit negative and self pitying so I thought I would leave you with a few good things about MND:
I’m no longer in the rat race it of having to get up in the morning and go to work, I retired from work by the age of 38 and don’t have slog it out until 67 or whenever the government deems we can retire.
I’ve also realised I’m inherently lazy and quite like sitting on my arse and watching films.
I have met some amazing people with and without MND, whom I would not normally have met.
As those of you with long-term partners will know, trying to get them to hold your todger after all these years is an uphill battle, I now get mine held and get a good vigourous shake at least three times a day
I now know what it’s like to be a Roman emperor, just sitting there whilst somebody pops the food in your mouth for you.
Either I or the Mrs get into places for free and usually get preferential treatment by not having to queue.
I get to spend more time with my amazing wife and daughter :-).
Hope you’re all well and making the most of your life,