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

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36 Comments

  1. janet parry said,

    February 9, 2012 at 3:03 pm

    Just thought I`d say a quick hello and wish you good luck with writing your blog-you write so well and definitely had me giggling along with you at the end – Life with MND must be so difficult and frustrating -This is a good thing you are doing , raising awareness and giving people a real insight into what it is like to suffer with this disease-I will share your blog onto facebook and will pop back often-take care and enjoy your lunch Jan

    • mndestroyer said,

      February 9, 2012 at 3:28 pm

      Thanks Jan, I want to be realistic but not doom n gloom, a giggle goes a long way 🙂

  2. rob Biggs said,

    February 9, 2012 at 3:12 pm

    Good to see you’ve not lost your sense of humour, Children are so very resilient and take things in their stride.

  3. Angela Marshall said,

    February 9, 2012 at 4:23 pm

    I hope you enjoyed your lunch and I look forward to your next blog.
    Take care, love to you all. Ange xxx

  4. Jas Bhavra said,

    February 9, 2012 at 4:49 pm

    I was laughing and crying at the same time, reading your blog, Adie. You have always been so positive about everything, and you are again dealing with this challenge quite philosophically and with your usual sense of humour. We love you for all that. May God watch over you all always, and our blessings for your love and devotion to your close ones. Jas xx

    • mndestroyer said,

      February 9, 2012 at 4:53 pm

      Thank you as always for your kind and supportive words. You’ll have to try the new toilet :-)……….
      Adie xx

  5. Joanne Moore said,

    February 9, 2012 at 5:34 pm

    Have just gone through numerous emotions reading that, but it did leave me giggling. x

    • mndestroyer said,

      February 9, 2012 at 6:23 pm

      Thanks Jo, there’s always something to laugh about :-). Hope you and the family are all ok.
      Adie x

  6. steve evans said,

    February 9, 2012 at 5:46 pm

    I am pleased you are continuing with your blog! I was at your stage in early 2009. I used to collect my triplet boys from school on my offroad wheelchair and they all got a lift back. Three years on and obviously things have changed and I am aware that my blog is lacking the positivity and humour of my earlier posts. But you are right about focusing on what you can do, keep it up as long as you can

    • mndestroyer said,

      February 11, 2012 at 8:34 pm

      Hi Steve, I’ve been following the tough decisions you’re currently facing. I cannot comprehend having to consider such things, and wholy respect the fortitude you are showing in the process. Positivity isn’t just about blending the good and bad and coming out with more than 51% good, being able to share sucj life changing decision in a public environment takes true character and I hope I have a fraction of your strength to face the future with such dignity,

      Stay strong and keep hold of that towel
      Adie

  7. Rachel Barrett (was Shipley) said,

    February 9, 2012 at 6:53 pm

    I have been thinking about you ever since you wrote your first blog and thinking about how we never know what life has in store for us when we are worrying about friends, image etc in our school days. It puts everything into perspective. Similar to the other people reading your recent update the tears started and as I blew my nose I burst out laughing. What an inspiration you are! Keep it up. All the best to you and your family.

    • mndestroyer said,

      February 10, 2012 at 1:50 pm

      Thanks for Your comments, it’s much appreciated. You’re right in that the details of everyday life take on greater significance when they become unavailable to you. Really pleased that it put a smile on your face though.
      x

  8. Marie said,

    February 9, 2012 at 7:07 pm

    Adie – your blog is incredible and a true reflection of you as I recall from our corridor or car park chats. You were eagerly waiting the arrival of your little girl as my first grandson was born and we indulged ourselves sharing the joys those tots brought us – you were justifiably a proud father and husband. Life has a nasty habit of catching us unawares sometimes but as you poignantly say we need to grasp those things which are dearest to us and take everything we can from them. You are clearly surrounded by love and devotion which are the very things which help us deal with the tough parts of our journey – I often think of you and wonder how you’re doing so I’m now up to date with your latest blog which had me crying and laughing in equal measure which I guess is what life is all about. My love to you all, Marie x

    • mndestroyer said,

      February 10, 2012 at 1:56 pm

      thank you for your lovely comments, you always were a pearl in a sea of insanity at work. I hope your health is on the mend and you’re enjoying your fabulous grandkids, I’m sure they make you proud everyday.
      At the end of the day you take heart from the good things that you surround yourself with and make the best you can.
      Take care
      Adie x

  9. Lou Baker said,

    February 9, 2012 at 7:21 pm

    Adie… the description of the reckless handling of your ‘Lamborghini Orange’ scooter 😉 and also the toilet incident, had me smiling!! you have found amazing strength to add incredible humour to your projection of what your daily life entails. The first thing that struck me is the speed at which your disease has progressed… I had no idea!… you are incredibly brave and I admire you for writing this blog, and appreciate more than words can convey the effort and time it took to create. Lou

    • mndestroyer said,

      February 10, 2012 at 2:00 pm

      hope you’re well Lou, pleased our endeavours made you smile, sadly it has marched on quicker than we anticipated but lifes for living and will usually find something to smile about. Thanks for the mascara too, K is well chuffed 🙂

  10. February 9, 2012 at 8:31 pm

    Adie

    Well done, at getting your blog going, it’s very entertaining! Glad you got your clos-o-mat sorted, I had the OT out today, and we talked about toilets and lifting hoists – I asked if the hoists were supplied by the NHS and guess what – no! So for 2 hoists and a clos-o-mat a cool £7k.

    I’m too much of a chicken to go to Louis school on my Tramper or wheelchair, mind you it’s too cold at the moment!

    All the best mate

    John

    • mndestroyer said,

      February 10, 2012 at 2:05 pm

      Cheers John, I’m sure you’ll find the same when you do your blog that helps put things into perspective and everything isn’t as crap as it can appear sometimes. I agree it shockingly expensive for these essentials, I don’t have a hoist and still have to rely upon K to lift me off the dam thing. Get your tramp around and go to school it will be fine, he’ll love it and maybe they could do a show and tell to help them learn more about the situation.
      Take care mate, Adie

  11. Georgia said,

    February 9, 2012 at 9:10 pm

    ” her compassion, understanding and perception of ones needs is
    phenomenal ” Just like her Dad then : )

    Been looking forward to your next blog addition. Seems strange in some ways but it’s such a good way to keep in touch plus it’s informative and well written.

    Bye for now
    Gxx

    • mndestroyer said,

      February 10, 2012 at 2:07 pm

      thanks G, I’m planning on doing these weekly if I can find things waffle about. Hope you’re well and will have to catch you soon.
      Adie x

      • georgia said,

        February 11, 2012 at 5:58 pm

        Hi Adie

        I would really like to catch up more. I emailed you a few weeks ago but maybe you are now using the same email address. Let me know if you are free one Friday afternoon and I will come round for a good natter.

        Gxx

  12. Tena Wells said,

    February 9, 2012 at 9:24 pm

    Mmm, pimp my scooter? I’m sure there’s a TV programme in there somewhere! I’d watch it.

  13. Bobby Barber said,

    February 10, 2012 at 10:07 am

    Really thought-provoking and insightful Adie, mixed with a great sense of humour, which it’s great to see you have maintained. Keep it up mate – look forward to reading your next post!

    • mndestroyer said,

      February 10, 2012 at 2:11 pm

      ‘maintained’?, I think my sense of humour deserted me for the 13 years I was at the work!. It’s nice that I’m able to put a smile on people faces by just relaying events that have happened, you must feel the same with your blog which is a cracking read.
      Take care mate

      • georgia said,

        February 11, 2012 at 6:05 pm

        It’s not just a “smile” You are allowing people to know how you are without them feeling bad about asking. Plus like anyone brave enough to write blogs like this – you are educating people. Adie you are making a difference and that is the best thing ever.

        Gxx

      • mndestroyer said,

        February 11, 2012 at 9:11 pm

        you are right G, many people (I myself included) do not know where to start asking about something like this as it is so foreign and personal. If one person learns something of the situation that they were too uncomfortable asking about then I have succeeded.

        I’ll e-mail you shortly,
        Adie x

  14. February 10, 2012 at 5:34 pm

    Admiration, admiration and well bloody done! Throughout the period of time I have known you I have considered you to be committed. If you weren’t delivering 100% in the gym then it wasn’t good enough and that is a good thing but even better when the family around you can do it too. My admiration goes to you all. Shane & Tina

    • mndestroyer said,

      February 11, 2012 at 8:59 pm

      Hi Shane, when we trained I never said how I proud I was to do so. I may have taught you a few techniques but that pales into insignificance compared to what I learned about never giving up, doing everything up to and beyond what others have said is your limit and never accepting the limitations placed by others. You have taken part in life with a fabulous family and overcome adversity that many cannot comprehend, The feeling I had watching them having to carry you out of the boat is something that will stay with me forever, I’m sure you never shared how much The event really affected you, I can imagine that is much greater than you told us, that is true strength in your accomplishment in helping others.

  15. Jim Anderson said,

    February 10, 2012 at 7:16 pm

    Very entertaining read Adie! Also inspiring, which you have always been since this started. Keep up the posts and I look forward to the next one. Take care, Jim.

    • mndestroyer said,

      February 11, 2012 at 9:03 pm

      thanks Jim in one my future blogs I have to talk about the upcoming poker session… Hopefully I will have won a few quid and woz will have done some suicidal all ins!

  16. February 11, 2012 at 7:10 pm

    Adie

    We have not met but I know your gorgeous wife, beautiful on the inside too. First met Kiran a few years ago through a pampered chef party. I have thought of her often over the years as I am still using the dish she persuaded me to purchase. It has been a good investment. Imagine my surprise when we met again in December when she interviewed me for my current temp post. I have enjoyed the time I have spent with her over the past few weeks. She has such a generous spirit.
    I wish you all some happy times especially with your little princess.

    • mndestroyer said,

      February 11, 2012 at 9:06 pm

      thanks Gillian for your kind words, she is such an amazing person who is so selfless I’m truly proud to be married to her and have such amazing daughter. Pleased you like the dish and hope you got the job:-)

  17. Fiona welch said,

    April 5, 2012 at 6:04 pm

    Hi Adie

    It’s nice to know you’ve still got a sense of humour………………..especially the toilet “humour” bit.

    Fiona


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