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
To: top.gear@bbc.co.uk
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
Adie

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

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11 Comments

  1. Bobby Barber said,

    February 24, 2012 at 3:18 pm

    Not surprised you’re pissed off – very poor of Top Gear producers if they’ve nabbed your idea without even considering contacting you or highlighting MND as you suggested to them. As ever, though, great post! Great insight into life with MND told with humour. Your daughter sounds like a very special girl and I’m sure you’re rightly very proud of her. Take it easy mate.

    • mndestroyer said,

      February 24, 2012 at 3:30 pm

      cheers mate, it’s a shame but least they did something, would be great if car manufacturers started making scooters as clarkson suggested, could get some quality without being ripped off!!

  2. angela marshall said,

    February 24, 2012 at 3:27 pm

    Hi Adie, in tears reading your news, as I know how passionate you petrol heads are!! I have read this out allowed to my partner and he has suggested you look up ‘gravity games’ as they run events for soapboxes, scateboards etc all with the infrastructure with first aid, recovery, also maybe even assistance to conv ert controlls?? Maybe they would be intrested to work along with you. They run event at cadwell park. Hope this is worth a look. I have also heard this weekend that the motorcyclng road race club Thundersport GB are to run a sidecar festival at the end of the year and they do sidecar taxi rides for charity and they have discussed MND as being this years charity in respect of both Steve + one of the officials father who had MND. My love to you all Ange xxxx

    • mndestroyer said,

      February 24, 2012 at 7:50 pm

      Hi Ang, hope you’re keeping well. Thanks for some great ideas I’ll do some digging n see what I can do. You should hopefully read about any progress I make.
      All the best, Adie n clan xx

  3. steve evans said,

    February 24, 2012 at 3:47 pm

    brilliant couple of posts Adie. So much of what you are experiencing mirrors my life circa 2008-9. Our through floor lift installation, while not as troublesome as yours was also a bit of a shambles. I negociated a 2nd years maintenance worth £500 for my trouble. Is it Ascendit Lifts. Regarding the toilet issue, have you considered condom catheters. You soon forget about the psychological hurdles of using them and it removes any stress about drinking and getting to a toilet! I never used a manual wheelchair, couldn’t bear the thought of having to be pushed. I too had mixed feelings on the top gear feature. Havlng had a brilliant offroad wheelchair I felt the top gear treatment just trivialised the issues. Anyway keep blogging

    • mndestroyer said,

      February 24, 2012 at 7:56 pm

      Cheers Steve, it was a company called Obam who are quite a well known company in this area. Haven’t heard of condom catheters before, I’ll give it a google thanks. We haven’t a vehicle to get the electric chair in yet so manual is our only option, am trying to get some ramps sorted at present. Keep your posts coming too, enjoy reading them too.

  4. Lou Baker said,

    February 24, 2012 at 10:00 pm

    Hi Adie,

    I’ve sat here for a few minutes now, fingers poised, debating what to write. I did the same with your last blog entry, and feel terrible that then, I opted for the easy route.. to say nothing!… That decision has bothered me all week!!
    You verbally paint a very vivid picture of your life coping with MND and yet always manage to add quite a bit of humour! 🙂
    Keep up the good work… and should there be a next time that I can’t think what to write, I will leave you a ‘smiley face’, just so that you know I’m thinking of you all. 🙂

    • mndestroyer said,

      March 14, 2012 at 12:59 pm

      hi lou, please don’t feel that you opted for the easy route, that is not the case. It is very tough to comment on something like this and I am more than happy with :-). Hope you are all well, take care, Adie.

  5. Georgia said,

    February 29, 2012 at 8:34 pm

    Hi Adie

    Love the wacky races idea. Have you thought of approaching Fifth Gear on channel five ?
    Abe ( the car park attendant ) said to give you his best and says he is thinking of you. His wife is very ill at the moment and he has been through a real tough time but he is back at work now and making the best of things.
    Plus Robert Wright retired today – after 40 years !!

    Gx

  6. Tim Priestley said,

    March 13, 2012 at 8:23 pm

    Adie
    I have known you a long time, although we haven’t seen each other for a while. Still recall some of your hard hitting for Southcliffe at the crease! Like everybody else, when I found out about your diagnosis, ‘shocked’ isn’t an appropriate word. I remember you as a strong person, both in body and mind and know that this is a battle that won’t ever defeat you. It may well get the better of your body, but your mind is another matter.Keep going mate and remain positive. Will follow your blog with humble respect.

    • mndestroyer said,

      March 14, 2012 at 12:55 pm

      thanks Tim, that is much appreciated and hope to catch up with you next time we have a jolly 🙂


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