Pee’d off……..

here we are again, another week has flown by! They seem to go so quick these days it’s scary.

Well, what’s been happening this week? Saturday was a good day as it was a friends daughter’s birthday and they were all going swimming. My daughter loves swimming and is taking to it like the proverbial duck to water. We all met up in the foyer prior to going swimming and it is the first time that I have been out about in the chair and met up with friends. What was really nice was that there was no fuss or shocked faces, just the usual meeting responses and normality.  For that I am really grateful to them as the usual look is one of a rabbit in headlights as people feel they need to say something but don’t know what to say. When it was time to go to the viewing gallery it was really sweet that one of the lads just got on with it and gave me a push up the ramp to the lift. After a bit of manoeuvring I finally got to the viewing gallery and was able to just see a bit of the kids pool.

We started taking  our daughter swimming when she was a about six months old and I used to love throwing her around and teaching the basics, unfortunately they did not appear to be any access hoists around the pool that would enable me to get in there with her again, because of the supporting  nature of  the water it would be awesome to be able to get in and effectively walk unaided and feel the liberating freedom of unimpeded movement.

Anyway I digress, so there I am sitting in my chair in the viewing gallery chatting to one of the mums of the other kids, after about half an hour I started to regret having that second cup of tea at breakfast…  andam in a bit of a quandary at this point. I can’t propel myself along using my hands to get to the toilet and even if I could I not able to lift myself out the chair to do the deed. Daughter n mrs are not in direct eyeline so I’m starting to panic, if I can’t get their attention then what do I do? Do I ask the lady I am talking to, who is a complete stranger effectively, if she minds pushing me to the toilet, lifting me up, unzipping the flies and popping the old man out for me!!!. I really don’t think that would be appropriate but I’m getting desperate!!!  I think my distress telepathy reached the Mrs and thankfully she looked up and through my half assed waving and pointing she got the message I needed a wee. Much to my relief, up she pops with a robe she has borrowed and sorts me out. Crisis over and I haven’t had to ask a stranger to handle me in places theyIt really don’t want to. All is well that ends well and they come and get me when swimming is finished. My mate kindly pushes me to the lift,  we go down to the ground floor, the door opens and off he wanders leaving me the in the lift. Only took a few seconds thankfully for him to realise he had forgotten something :-).

You’ll all know how satisfying it is to have a good scratch, this is something that is really annoying and can quite frankly send you mad if you can’t get to scratch it. I’m finding I am unable to get my hands to most places where I have an itch now, especially the head for some reason! I really must find an alternative way of alleviating this frustration is my blood pressure is suffering as a result!.

A bit random that but was very relevant at the time!. As I have said previously, I’ve always loved my cars and driving them how they should be driven. I also tend to watch stuff on TV such as top gear. Below is a copy of an e-mail I sent to top gear back in September 2011:

— Original Message —–
From: xxxxxxx
Sent: Thursday, September 08, 2011 4:12 PM
Subject: Wacky races

Dear sir / madam,
I watched with interest the sterling coverage you did of the injured soldiers and their bid to race in the Paris Dakar rally. This sparked an idea…

I have recently been diagnosed with the terminal illness ‘Motor Neurone Disease’ and subscribe to a forum for sufferers of this awful condition. They’re a bunch of positive people, with a sense of getting the most out of life, and many of us are petrol heads!. Sadly we can now only drive mobility scooters or power wheelchairs and miss the fun of driving.

So what’s the solution?

We want to organise a Wacky races day, consisting of timed course trials, head to heads races / flat out 1/4 sprints etc, but all done in scooters and wheelchairs:-). We would love to collaborate with Top Gear in making this happen. It would I’m sure appeal to the sense of fun of the team, make an interesting and unique feature for the show, provide a great opportunity to raise awareness for this fatal and insidious disease and give a great deal of pleasure for us guys n gals that sadly haven’t got long left to live.

I look forward to hearing your thoughts on this idea,

Kind regards

So, Sunday night comes, eight o’clock, time for top gear. 42 min into the show they do an article where they modify mobility scooters and then proceed to race them against war vets. I have really mixed feelings on this, it is fabulous that it is an article that highlights the use of wheelchairs and scooters and that the lads with artificial limbs etc are able to use them and get the freedom from use, however though I have not had a response back from them it appears that my suggestion above may have been the catalyst for the article, and if so MND was ignored and an opportunity to raise awareness for us was lost. Hopefully I don’t sound selfish when I say I feel a little peeved about this.

I was eating a Thai curry with rice the other day and had managed to eat most of the big bits but was really struggling to get the last few bits with the spoon. After a few minutes of clattering around and getting more pissed off by the second I just dumped the spoon in the bowl in frustration. My daughter just wandered up with a smile on her face, scraped up the food I couldn’t get and just popped it in my mouth, bless her. It’s the first time she’s ever done that and is another great example of how youngsters just take things in their stride and adapt. she makes me so proud of her in the way in which she is handling this. When I went over to Sheffield last week for my ‘energy healing’ she was stood next to me  whilst  the guy was talking, he mentioned MND and she whispered in my ear that what you’ve got daddy. A couple of days later she said that she doesn’t like motor neurons, she has taken on board all she has heard and has some comprehension of what it’s all about, but this is the first time she has spoken specifically about it. Even though she’s not even 5 yet we will not lie to her and just be a bit economical with the truth sometimes, the hardest one was when she asked if daddy was going to get better, thankfully the Mrs replied that the doctors are trying their hardest to find a way to make me better. This was such a great answer I don’t think I would have been able to deal with the question so simply and so well.

Anyway time to go, but just time for my favourite quote from that old romantic Edmund Blackadder:

life without you is like a broken pencil…………pointless

To rub or not to rub, that is the question…

Well, here we are again, another week gone by and boy does time fly!. It’s been a fairly busy week and I have certainly been exposed to some new experiences,  I’ll come to these  shortly.

The good news is I am getting to grips with the  toilet and managing not to enema myself every time I use it :-). The Arctic geyser has thankfully decided to relocate to more temperate climes, still not subtropical, however it’s a vast improvement. Any visitors are welcome to try it just for the experience.

Thankfully, this week hasn’t seen any significant physical decline and am pleased to report that I have not fallen flat on my face at all :-). We have received a raising cushion in the event that I go for a Burton. It is basically an air cushion with sections that you put underneath you and it is attached to a mini pump that blows it up and lifts you off the ground. Hopefully, once we work out how to use it properly it will allow me to sit on the sofa again and snuggle down with Mrs to watch a film in the evening knowing that I’ll be able to get up again. I really do miss being able to do that, so fingers crossed this would be a great help.

The most helpful change that we have made so far is the installation of a through floor lift. By September last year getting up stairs was virtually impossible and a stair lift was never going to be an option as  it would have to be custom-built to curve around the stairs and also as the abdominal and core muscles decline I wouldn’t have the strength to stop myself falling off it. this is the most life changing bit of kit that we have and is an absolute godsend. Unfortunately, the installation by the so-called ‘professionals’ left a lot to be desired!. It was supposed to be a couple of days for fitting and the builder who came to strengthen the joists and build the frame was an absolute star, sadly everything else didn’t quite go as planned… They had to move some pipes under the floorboards in order to strengthen the joists, so I’m sitting there in my chair watching TV and there is shout from upstairs swiftly followed by the smell of gas! The plumber had cut through the damn gas pipe which was live, so they turned off the gas and everything was okay… The electrician had to put in the cabling for the lift and had been told quite clearly he must tell me when he was going to turn off the power as I have a gravity fed filter on my koi pondand I needed to isolated before powering down and turning off my pump. So what happens?, He turned it off without telling me. The next thing that I hear is water gushing out of my filter and starting to flood the garden, the pond is about 15,000 L so rapid action is required to say the least. I eventually managed to sort out and stop the flood, sadly not a word of apology from the sparky for his actions. So at this point I have no gas water or electricity, but not to worry you the electric will be back onin 20 mins so all is fine, just in time for lunch. Four hours later, still no electricity as he’s trapped the wires somewhere and causing the RCD to trip out every time he tries to put the power back on. So, come teatime we finally have all utilities back on. Yippee. About eight o’clock I hear this rhythmical tapping on the ceiling so go to investigate and there is water pouring through the ceiling and down the walls. the plumber eventually comes back After we track him down, he checked the tank in the loft and it’s gushing water have as the ball cock is stuck downand the overflow is not connected. The ceiling, walls, carpets and floorboards are soaked and it needed a dehumidifier running for three days to dry out the house. So eventually a few days later than planned the lift gets installed and I’m a happy bunny as I can now get upstairs easily to put my daughter to bed. I have to thank the local branch of MNDA for covering the installation costs and the persons who donated the lift when they sadly were no longer able to use it. Had it not been for these two kind and generous actions it would have been nigh on £10,000 to have had this installation done.

So, back to new experiences. Through my training I have always believed that where the mind goes the body will follow, it is only the limitations of the mind that prevents you achieving success or gains. I have also had a suggested to me to consider homoeopathic /alternative treatments, so when a situation arose where I was offered some “energy healing” I thought I might as well give it a go. I duly attended a session on Monday which was scheduled to last for an hour and a half, it was to be some deep relaxation, energy manipulation and acupressure. The session kicked off with the relaxation, with my eyes closed I am sitting there in my wheelchair imagining that I am walking down the beach and feelling the sand between my toes, unfortunately the physical aspects that I am no longer able to do are difficult to imagine with fond memories so I’m not getting relaxed that much. The next bit, for which I had my eyes open, involved handwaving and swooshing around my body and my head. This is something that is completely foreign to me and whilst I am open-minded enough to give anything a try and fully respect the process people truly believe in however I still cannot comprehend how a hands off approach can have an effect on the bodies well-being. The third aspect was the pressing of various parts of my head and face, this was actually really quite relaxing and I’m sure this coupled with the hypnotic Chinese music sent me to sleep towards the end of the session. It may sound that I am a complete cynic, but I actually had the best night sleep I’ve had in ages that night and I’m going back again for some more. I also was introduced to reflexology yesterday, something which  I found to be both  interesting due to the direct interaction with your body, meridian lines and chi, and relaxing due to the massage of the hands fingers and forearms which are quite stiff usually due to muscle wasting and shortening. I have to say that I am pleased that I have given both of these ago and hope that they are cumulative in their use.

I have had a great suggestion that there should be a pimp my scooter program, I can just imagine Westwood going to town and installing amps and subs along with some big fat 22 inch chrome rims on my scoots. The subject of modifying scooters came up a while ago with some fellow MND people and progressed to what else we could do. I thought that a wacky races day where we all get our scooters and wheelchairs and do a variety of races, obstacle courses or just flat-out quarter-mile sprints would be fun and an opportunity to raise some money and awareness. I even e-mailed top gear to see whether or not it would be something that we could do with them as it would make an interesting feature for the show and also provide some profile for this little-known disease. Unfortunately I haven’t anything back from, but you never know I may try and organise something when the weather gets better :-).

On a final note, my daughter has started swimming lessons and I wasn’t going to miss this for the world. I was on the viewing balcony and she was just going down to get ready for swimming, I said goodbye and love you to which she replied I love you to the moon and back. It was such a sweet thing that it brought a lump to my throat, how can just a few little words melt you so much.

Take care all

If you’re happy and you know it clap your hands……

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