INTRODUCTION AND MY RACE FOR LIFE (updated March 04)
G'day, My name is Steve and one of the purposes of this page is to introduce as many people as possible to MND (Motor Neurone Disease or ALS) because our cause badly needs awareness. Along the way hopefully I'll meet some fellow PALS and do abit of exploring or surfing myself. I already have meet some wonderful people and the second purpose of this page is to use it as an avenue to continue to meet more wonderful people. From Canada, the US, UK, to parts of Europe, South Africa, NZ and throughout Australia I hope we can learn about MND and maybe share a laugh together. Anyway, below is a story I wrote to help awareness so please read it. As I always say "Stay Positive, Stay Well." Cheers.
'MY RACE FOR LIFE' Every couple of months I venture down to Swanbourne to talk to a group of people training to be Carers. My challenge is to tell them about myself and my experiences dealing with Motor Neurone Disease. Hopefully at the end my story will have given them a better understanding of some of the aspects confronted by people with disabilities and this dam disease MND, and have given them some information useful in their future role as carers. I try to keep it simple, I try to be honest and while the story may be sad at times I always try to find the positives and find a little humour. Truth be known these sessions are equally as helpful for me, free therapy if you like. Anyway, like the triathlete before the race, a little nervous, I proceed to tell my story, PART 1. Something like thisÖ
"Hello, my name is Stephen. I hope you can understand my weakened voice otherwise this is going to a pretty boring talk. My story starts twelve years ago remember twelve because itís important. I was your average young man. Married with two sons, one newly born, a mortgage and a job. Worked hard, enjoyed a beer with my friends and pretty much Ďnormalí. I had a twitch in my right arm that wouldnít go away. Just a pinched nerve I thought. After eventually going to see my doctor I was then referred onto a specialist. After many tests and just before Christmas, the specialist entered my hospital room and very coldly advised me I had Motor Neurone Disease and about five years to live! Twelve years ago"!
"To say I was shell-shocked would be an understatement. I went home and tried to enjoy Christmas with my young family. I guess I asked myself the usual questions. Why me? What did I do wrong? Whatís Motor Neurone Disease"?
"I have since discovered some of the cold hard facts about MND. It is a terminal illness with no known cause or cure. MND occurs in all age groups, but primarily in people aged over 50. Over 370 people in Australia a year die from MND, one a day!It is expected to become more common as the number of older Australians increases. Death occurs relatively quickly, usually within three to five years of diagnosis. People with MND become severely disabled and dependent on their carers. Simplified MND is the opposite of Alzheimerís. While their mind wastes away and their bodies remain relatively normal our bodies waste away and our minds remain relatively normal. Although some of my friends jokingly dispute that statement in my case. While that all sounds pretty negative remember Iíve been around twelve years, as have some others, and there is an enormous amount of research going on around the world. We must always have hope"!
"Anyway, because my problems hadnít really started yet it was easy to ignore my predicament. To deny that anything was wrong. So I worked hard, extraordinarily at times. Unfortunately as time passed this became increasily difficult as my muscles wasted away. As my hands, arms and voice became less useful. As my new disabilities started to shape my life and its options. I guess at only thirty-nine Iím unlucky to have this dam disease, but Iím still lucky enough to be walking and Iím still alive after twelve years. Most MND people are completely incapacitated or at best wheelchair bound. Fingers crossed."
"Over those twelve years my life has slowly changed. Iíve retired. My physical capabilities have slowly decreased. From being a fiercely independent person to relying on others for assistance has meant a changing of attitude. Words that come to mind are frustration, anger, burden, guilt and uselessness. As my physical capabilities have to be re-evaluated often so do my emotions."
"Not being able to dress myself properly anymore. Not being able to eat normally. When I get that dam itch on my head, being unable to reach up and scratch it. Having no stamina. And the list goes on. While the disabilities are extremely difficult, having to constantly re-adjust your lifestyle can be an equally hard task. Like you I used to take everyday tasks and happenings for granted. Not any more."
"For example. I canít do up trouser flies and before I would yield to the necessity of wearing daggy elastic waisted pants this stubbornness made going out anywhere interesting. When the old bladder could take no more and nature called, actually she screamed, I would race to the toilets with my darling wife in tow. Just before entering my wife and I would slip into the corner or shadow where she would very discretely reach down and unzip my fly. I would then race inside to complete the business at hand. Yes we did get sprung a few times. The initial embarrassment of being caught the first couple of times soon disappeared to be replaced by a feeling of so what. May be a male thing. I was more worried that my wife would grab the wrong fellow on the way out. Sometimes you have to laugh otherwise I think Iíd go mad."
By this time the effort of telling my story now equates to having completed the first swim leg of a triathlon. Time for a breather as another fellow storyteller gets their chance. I sit back to listen and ready myself for the next part of my story, the next leg, the bike. As I sit there I feel a little envious because as they mention their condition there is instant recognition from our audience whereas unfortunately because MND lacks public awareness I had to explain what MND is. They then explain about the large support mechanisms and Associations in place to assist them. I sit there knowing my little Association, the Motor Neurone Disease Association of Western Australia, who offers many essential services to people like me and without which we couldnít survive, is grossly under funded by the Western Australian Health Department. I want to jump up and say that itís not fair. Say now my Association has had to struggle with scarce resources and mainly voluntary support. How even so they have managed to offer benefits that assist our quality of life and our ability to stay in our homes. I bit my tongue. Time for the bike. Iím asked to tell more.
"I often referred to normal. Probably wrongly so, but what I wouldnít give to be normal again. To be able to do what I want when I want to do it. To be able to go up the park and kick the football with my boys. To be able to reclaim some of that independence and self-worth. I have spoken about me, but what about my family. People usually are generous with their sympathy for me, which is not what I crave, but what about the impact on my wife and boys? I shutter to think about the extraordinary pressures added to the already difficult growing times of two young boys. And my ever supportive and darling wife. Sheís had to become my valet, driver and counselor. I think itís sometimes tougher for her."
"But, this disease isnít all bad. It has made me a better person, but not that I was a rouge before. It has enabled me to meet some incredible people. People faced with adversity yet joined by a determination to face that adversity. Some of those people have become my friends."
"I remain positive, forever positive. Determined to fight this disease. I have every reason to succeed. A wife and boys I love dearly. Although I accept my life is under threat I wonít give in. I want to watch my boys grow up and share some more laughs with my best mate, my wife."
Off the bike and ready for the run. Another quick breather. Time for the run. Time for questions.
"Do you have problems with your voice?" "Yes, sometimes people are unable to understand me and assume Iím drunk. And Iím not always. Only joking. It makes me angry, but thatís the way some people are. I move on. There are more important worries".
"What can you do to help yourself?" "I try to remain as active as possible in both body and mind. Itís important to be positive, as I believe a negative mind can be your worst enemy. I try to address issues before they become problems. For example physiotherapy for a sore shoulder before it becomes a painful shoulder. I tell my wife red wine and loving is the answer. She wonít believe me. I try to keep living."
"Thanks for listening."
Across the finish line. Did I win? Who cares, I finished. The reward is another audience has a better understanding of MND and some of the feelings associated with it. Some of the credentials they will need to care for someone with a severe condition Iike Motor Neurone Disease. I say good-bye and my host thanks me for my efforts and says that was good. I hope so. I leave feeling like that triatlete who has just finished their race. Satisfied, a little pumped up and glad itís over.
NOTE: IT HAS NOW BEEN 16 YEARS, some things have changed, but I have not the time to write about it, I've been busy writing a book called "MND Scrapbook", which is described in the story below. The story 'A manual from the heart of the matter' was written by Madeleine Glews for a disability publication and perhaps best describes my eighteen months of toil...anyway, email me at firstname.lastname@example.org if you so desire.
The International Alliance of ALS/MND Associations : Together we can make a difference, the world over.....
Over 5 Club: Giving Hope, always.....
Motor Neurone Disease Association of Australia: A place for people living with MND.....
ALS Ride for Life - Strike out Lou Gehrig's Disease : A great place to start for people with MND/ALS
ALS March of Faces: Another great MND/ALS site.
Australian Footbal Leaque: Aussie Rules Football.
NBA Basketball : Love that game.
English Premier Leaque Soccer: Love that game too.
World Rally Championship : These guys can really drive.
####### IT'S HERE...FOOTY TIPPING COMPETITION - www.etipping.com.au/MNDtipping ...JOIN UP,COM'ON, HAVE SOME FUN & WIN PRIZES
*If you live in Australia each state has an Association where services and events are available to help people living with MND. Get in touch! These Associations are a great starting point. Join the fight Phone 1800 80 6632*
ABOUT MY "MND Scrapbook"...Taken from The Disability Update.
'A manual from the heart of the matter'
"I vividly remember my diagnosis and the following years. The new world the diagnosis opens before you is one you never expected and one you are totally unprepared for..."
These words form the introduction to his 240-page MND Scrapbook: A Resource and Guide for People Living with Motor Neurone Disease and neatly sum up Stephen Brown's motivation for undertaking the project. This hefty resource book is at once a practical reference guide, and an intensely personal account of confronting and dealing with the reality of a degenerative disease. In it, Stephen Brown charts a journey through the myriad issues that eventuate in the life of someone with Motor Neurone Disease (MND), covering every aspect of the experience, from coping with incontinence to facing death.
MND is a terminal degenerative disease of the nervous system with no known cause or cure, most frequently diagnosed in people over 50 years of age. As the disease gradually demolishes the neuro-muscular system, people with MND face a continual loss of function, starting with voluntary muscles and eventually progressing to increased paralysis and inability to communicate.
Created with sponsorship and support from the Tzu-Chi Foundation, the Rotary Club of Hollywood, the MND Association of WA, and family and friends, the MND Scrapbook is a natural extension of the advocacy role Stephen has taken on from very early on in the course of his illness, to other people who are diagnosed, to their families and friends, and to the carer workforce. Until his verbal communication began to decline a year ago, he was a regular speaker to trainee carers at Care Challenge and Austral Training. In the majority of cases of MND, death occurs within five years, but Stephen Brown is still alive more than 15 years after first being diagnosed. Having now lost the ability to speak, he will not be delivering any more oral presentations on his disease. But the MND Scrapbook remains a hugely articulate and helpful ambassador from the heart of the experience of living with increasing disability. Copies of the book have been purchased by State library services in Perth, Brisbane, Adelaide, Melbourne and Sydney and are available to members of MND Associations Australia-wide.
Stephen, who is still communicating through email, points out that the Scrapbook is equally relevant to people with other neurological conditions. "The more people I can make aware of the book," he writes, "the more chance there is of the book getting out there and helping people". ___________
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