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.