Where it all begins

I’m a long way into my journey, but you’ll soon catch up!!

Here is a brief article I wrote not long ago which I hope will give you an idea where I’m starting from and why I chose to document my personal journey. I hope to be able to update regularly but that will be dependent on what happens!!

 

Life with MND.

It’s was 24th of September 2010 and I have been in Sheffield hospital for the last five days. During which I’ve been used as a pincushion for a raft of blood tests, undertaken an MRI from cranium to base of spine, been wired up to ECG’ s, had needles and currents passed through me on EMGs and been x-rayed. As Sheffield Hallamshire is a teaching hospital numerous students and doctors have been prodding, poking and manipulating most parts of my body.

I have always been active and involved in sport all of my life. Playing football for many years, going to the gym, competing in bodybuilding, and doing martial arts have built a healthy knowledge and understanding of my body. I am bullet-proof. Then weakness started in January 2010, predominantly in my hands and as the year went by I noted this weakness progressing and starting show in my legs to the point where I was unable to run any more. I recall remarking that I was feeling old.

Friday comes and it’s time to find out what my diagnosis is. Due to previous cervical spinal issues I had been expecting to undergo surgery in order to correct this. The night before I had researched my symptoms based upon the terminology I have heard during the week and come across Motor Neurone Disease. I had never heard of it before and the ticklist of symptoms is like reviewing myself. I want to know more about the disease so used the Internet to obtain information about what the course is and how other people live with it. I found that some people live with this for many years, most notably Stephen Hawking. However, in 50% of the cases people die within 14 months of diagnosis and the average lifespan being between two and five years. Subconsciously I was preparing myself for the worst.

I am sitting in a sterile ward environment, on a hospital bed with my fiance, just waiting.  The doctor should have been here a couple of hours ago. I tell myself they are just checking everything and not to worry as I’m too young to have MND. I have an amazing three-year-old daughter, a beautiful partner, a career, and the trappings that enable me to have a fulfilling and enjoyable life. We’ll go to Disneyland as a family, I will teach my daughter how to ride a bike without stabilisers, teach her to box, wire a plug, have the agony of meeting the first boyfriend, see her do her exams and drive her first car, grow older as a family and maybe one day have grandchildren.

The consultant arrives and sits down on the edge of the bed. With the curtain pulled around us to afford privacy in the middle of the ward, he sits nervously, finding it hard to keep eye contact or grasp the invisible piece of fluff on the bed his fingers are searching for. The diagnosis is delivered to myself and my future wife, she doesn’t understand what is going on until I asked “how long do you think I’ve got left?”. I am told to expect disability within 18 months and the rest is unknown. I ask a few pointless and banal questions to which there really are no answers. No one knows why, how, when and there is no cure or treatment that is effective. There is no hysteria, crying or shouting, just a surreal calmness.

I gather my things and say “if that’s all, then I’m off to live my life”, we leave the hospital wondering how many of my dreams I will see.

 

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21 Comments

  1. Tena Wells said,

    January 31, 2012 at 12:36 pm

    Dear Adie,

    I remember you as a quiet child around the age of nine, drawing profusely with skill and innate creativity. I remember very little else besides the fact you were nice, and never had a bad word to say about anyone.

    FB is a breeding ground for (especially) old classmates to shove their wonderful, fulfilling lives on their peers when the truth is often given scope to preserve the author for what is otherwise a very ordinary life doing all the mundane things we all must do and making mistakes along the way. Personally, I’d much rather hear the truth!

    I commend you on your honesty and integrity, and also the beautiful family you clearly have – I’ve looked through your wedding photos before, smiling to myself when I see radiant, genuine faces. To hear of your medical condition makes me sad and angry in equal measure, but thank you for such a poignant, dignified and eloquent account. It gave me great pause to reflect on my own life, my own family, and be conscious always to cherish the moments we have together, after all, it’s apparent from your blog, you, like me, are very family orientated, and every moment counts.

    I wish you nothing but the best in life, Adie, and wish you continued good health with the loving support of your family. There’s nothing, I know, but if there should be any small way I could help, I hope you wouldn’t hesitate.

    Very best wishes to you all, Tena Wells (nee Bedford)

    • mndestroyer said,

      January 31, 2012 at 12:59 pm

      Hi Tena,
      Thank you for your very kind and apt words. The empathy and the eloquence with which you write is really touching and humbling to read. I too find myself reminiscing back to old school days, and like yourself remember a few bits, worryingly my most withstanding memory is doing country dancing and hating every minute of it!!. Maybe some school recollections could add some mirth to the blog…

      I hope you are well and that you have a life and family that is everything you dreamed of, it’s something to cherish always.

      Kindest regards
      Adie

  2. Loz Hayes said,

    January 31, 2012 at 12:50 pm

    Very poignant Adie and very unfair. I know you, and i know you won’t give up.

  3. ketytheyeti said,

    January 31, 2012 at 7:40 pm

    hi! i’ve had mnd for 8 years (i’m 35) and also have a blog. blogging can be a really positive process! i look forward to reading more of yours.

    kate x

    • mndestroyer said,

      January 31, 2012 at 7:50 pm

      Hi, nice to hear from you. I’ve followed your DWP battle and was really chuffed to see you get a result, good on ya :-). Look forward to reading further stuff from yourself too.

      All the best
      Adie

  4. Georgia said,

    January 31, 2012 at 9:00 pm

    Blogging is a brilliant idea Adie. Hopefully it will be therapeutic for you and helpful to others.
    Once again your tenacity and emotional strength is inspirational.
    Georgia
    xx

  5. steve evans said,

    January 31, 2012 at 9:46 pm

    I look forward to your regular updates. I have found writing my blog over the last couple of years, quite theraputic. http://steveevans35.blogspot.com/
    You have my very best wishes, regards Steve

    • mndestroyer said,

      February 1, 2012 at 11:13 am

      Cheers Steve, really pleased it helps you, am hoping the same will apply for me. Need to have a read of your when I get 5 mins 🙂

  6. Tena Wells said,

    January 31, 2012 at 11:03 pm

    OMG! Country dancing, the abject horror of it all! “Girls pick a partner” is etched with sweaty palms and palpitations into my psyche! Yes, I remember it well – suddenly (thankyouverymuch!) and I also remember having to partner you at the school summer gala to showcase our ‘dancing ability!’ I am literally squirming here at the flood of embarrassing memories!

    I remember Mrs Ellis very well and the damn chinchillas! I remember the Ilam Hall youth hostel trip and her abandoning class at every opportunity to play rounders on the field – God knows, can’t go off the curriculum plan these days! I remember sitting between Loz Hayes and David White in class and sponsoring Mrs Ellis to stop smoking, to which, I’m reliably informed by Helen Drummond, she didn’t!

    In answer, yes, I am well, thank you. I do have a wonderful husband of 22 years, and four beautiful, happy, healthy kids, I find they define me, tbh. No matter what I do or accomplish, my greatest achievements are my family and will always be the best of me. I’m a roots and wings girl – I believe it is every parents’ right and privilege to watch their children grow up and find their own way in the world.

    I hope, with all my heart, you get that opportunity.

  7. Jas Bhavra said,

    February 1, 2012 at 6:29 pm

    Dear Adie, we, Kiran’s family, have known you for the last 16 years + and know what a wonderful human being you are, caring, kind, loving, and now a loving husband to Kiran and a doting dad. Life never prepares us for the most unexpected scenarios but you have accepted your illness quite philosophically, and we are all so very proud of you, and pray you will deal with each day with courage and strength when new challenges arise. Kiran has always been a rock by your side, and now she is an absolute gem helping you whenever you need any support, we are so proud of her. We can only pray that you both enjoy your life being there for one another for a long time, and cherish every moment. Lots of love always.

    • mndestroyer said,

      February 3, 2012 at 7:55 pm

      Thank you, you always have such kind and positive words for us. We can never let you know how much your support and kindness means to us all.
      Adie x

  8. Tena Wells said,

    February 3, 2012 at 7:33 pm

    “Remember to look up at the stars and not down to your feet. Try to make sense of what you see and wonder about what makes the universe exist. Be curious. And however difficult life may seem, there is always something you can do and succeed at. It matters that you don’t just give up.” — Professor Stephen Hawking on his 70th birthday

    • mndestroyer said,

      February 3, 2012 at 7:46 pm

      If I don’t look at my feet, I trip and fall over, then I look like a tortoise floundering on it’s back. If I’m on my back then I can see the stars, alls well that ends well 🙂

  9. Tena Wells said,

    February 5, 2012 at 8:40 pm

    Yeah well, he’s got the advantage of a wheelchair. Damn his poignant, yet impractical inspirational sensibilities 😉

  10. adam bloom said,

    February 9, 2012 at 3:24 pm

    Truly inspiring foxey – remembering malia and kavos, remember being turfed out that hotel after 2 days!

    • mndestroyer said,

      February 9, 2012 at 3:33 pm

      Cheers Mr B, I find myself reminiscing and always come back to those two hols as the best. I may recall a few stories at a later date. I wonder if we still hold the record for being the fastest group to be chucked out of Club 18-30……..about 18hrs as I recall :-). Great times 🙂

  11. Georgia said,

    April 10, 2012 at 3:48 pm

    If anyone would like to help raise money and awareness in Adie’s name please use the following link –

    http://www.justgiving.com/Give-MND-a-dressing-down

    Gx

  12. jackie said,

    May 1, 2012 at 7:52 pm

    Hi Ade, enjoying your blogs, so much admiration for you, your an inspiration to so many people, sending you lots of love and hope to see you again soon, give my regards to your lovely wife x


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