Dan Maloney versus Amyotrophic Lateral Sclerosis

What is ALS?

    Amyotrophic Lateral Sclerosis (ALS) is a rapidly progressive neuromuscular disease. It attacks the motor neurons that transmit electrical impulses from the brain to the voluntary muscles in the body. When these muscles fail to receive messages, they lose strength, atrophy and die.

    ALS can hit anyone at any time regardless of age, sex, or ethnic origin. The average life expectancy after diagnosis is 3 to 5 years. ALS does not affect the mind or senses. In 90% of cases, it strikes people with no family history of the disease.

     I first noticed a problem with the strength in my legs, particularly the left leg, in August of 1998. I had attended my Aunt’s funeral and while genuflecting upon entering the Church, I found it difficult to get up. I had to hold on to the pew and pull with all of my strength. Next I noticed I was tripping more frequently and just assuming I was clumsy, I didn’t do anything about it.

    In January 1999, during my annual physical check-up, I mentioned this to my Doctor. He referred me to a local neurologist for tests. I didn’t appear to be getting to the root of the problem with him so sought out a second opinion. Thanks to my son in law, Dr. Derek Lowe, who is a practicing physician in White Rock, B.C., I was able to get in to see Dr. A Prout, a Neurologist in Vancouver, B.C. My first visit to him was in May of 1999 and within forty-five minutes he was able to diagnose the symptoms as ALS, more commonly know as Lou Gehrig’s disease.

    I knew exactly what that meant, as I was familiar with the Sue Rodriguez case and more recently had lost a dear neighbour, Peggy James, who lived across the hall from me in the Condominium where I lived. Here I am, 57 years old and I know there is no cure and it is a fatal disease. I was okay with the verdict until I had to break the news to my sister, Rose, who had accompanied me to Vancouver. I guess reality hit me on the elevator as I tried to explain to her what this terrible disease is all about. It took me a few minutes to clear the tears from my eyes.

    We returned home to Victoria, B.C. the same day. Again, I broke down as my wife had decided she needed some space and had moved out. There I was alone with a broken marriage and a terminal disease that I had to face. Thanks to a very understanding employer, Island Farms Dairy, and a most gracious Sales Manager, Keith Bryan, I took a couple days off work, to come to terms with what my future would be like.

    The next step was to start notifying my three daughters, my two sisters, a brother and their families. From them I gained strength. I knew they would be hurt if I was anything but honest with them.

    Thank God, I had the insight to check out the local ALS Support Group. From that moment on, life got better. That one phone call helped me to realize life is still good. Trish Braun of the Society came over to visit and explain the Assistance and Support that was and is available to me.

    My next challenge was, how was I going to break the news to my good neighbour and friend, Stan James, that I had fallen to the same disease that took his precious wife from him only a couple of years previous. I knew he attended the Support Group meetings and didn’t want him to find out by seeing me there. So being the coward that I am, I phoned him rather than knock on his door to break the news. I could hear the sadness in his voice and visualise the tears in his eyes.

    In June of 1999, I visited Dr. Andrew Eisen of the Vancouver General Hospital. He confirmed what Dr. Prout had diagnosed a month earlier. Dr. Eisen is the final authority for this disease. His efforts and that of his Staff are boundless on our behalf. Now there is no doubt. I do have ALS.

    It was about that time I decided I was going to live with ALS rather than die with ALS. I had to be as strong for my family as they were for me. I could dwell on “Why me Lord” or count the many blessings I had in my life to this point. I had three wonderful daughters, two sisters, a brother, and three sons in law and seven grandchildren at that time to be grateful for. I had many friends with whom I had worked and who truly cared for me.

    In July of 2000 I was sent to the G. F. Strong Centre in Vancouver to be assessed by their ALS Team. This included a Physical Therapist, Occupational Therapist, Social Worker, Speech-Language Pathologist, a Clinical Nutritionist and a Respiratory Therapist. This Team encourages regular contact with my Doctor and Therapists. They are always available for consultation. I realized, once again, how fortunate those of us with ALS are, to have such expert people willing to assist at any time.

    In May of 2000, although I wasn’t ready mentally, physically I knew the time had come to end my 38-year career in the Dairy Industry. I was tripping more often and relying on my cohorts at work to carry more of my work - load. After a discussion with our very sympathetic Human Resource Manager, Bill Squires, it became obvious I just couldn’t continue working without the risk of causing irreparable harm to myself.  Again with tears in my eyes I sat down with Keith Bryan, my leader, friend and Sales Manager, to discuss my departure. Next, I had to face my close, loyal friend, Ken Jones, to tell him he no longer had to cover for me.  I had recognized my limitations and it was time he had a full able bodied man to help him with his duties. Finally, fighting back the tears, I approached David McMillan, our C.E.O., and friend, thanking him for his generous support and advice over the past twelve months while I was adjusting to an unknown future.

    With my marriage over, my career behind me, my daughters came forward with offers of a home with them. I had always promised my self I would never move in with any of them. It just wouldn’t be fair to them, while raising their own families.

    I learned you never say never because they convinced me they’d worry less if I weren’t on my own. So here I am living in Salmo, B.C. with my daughter, Colleen, son and law, Ray, and three of my eight grandchildren. I’m very up front with my family as to how ALS is affecting me. I know there would be nothing worse than hiding the truth from them.  We deal with my set backs on a daily basis. In October of 2000, I returned to the ALS Team at the G. F. Strong Centre for further follow up assessments and again in August of 2001.

    Today, December of 2001, I'm doing okay. Sure, my legs don’t work and I’m confined to a wheelchair, my shoulders and arms have become very weak, I can no longer drive, but at this point I can still do most things for myself. I do, however, have a Homecare Worker come in three times a week to assist me with showering and range of motion exercises.

    I correspond with dozens of PALS (People with ALS); belong to a local Support Group headed by a wonderful lady, Bette-Lou Askew, who lost her husband to ALS. She is a wealth of knowledge and help to those of us in the Western Kootenay region living with the disease. Those of us with ALS are so fortunate, especially in B.C., for the immense support available to us in the way of equipment and assistance. The Victoria and Vancouver Support Groups are filled with caring, helpful volunteers, devoted to making life good for us.

    There is little government support for this terrible disease. We rely on donations from the Public. B.C. consistently leads all of Canada in raising funds for research. There are as many deaths from ALS annually as there are from Aids, yet little financial help from the Government.

    The equipment costs for each patient are on average $137,000.  This does not include the enormous cost of drugs, vitamins etc. The renovations in my bathroom are complete, making it wheelchair accessible, at a cost of over Thirteen Thousand Dollars. 

    I take every opportunity I can to spread the word of this devastating disease, as only when the public and indeed the government becomes aware of the impact it has on not only those of us who live with ALS but also on our families and loved ones, will the funds come forward to find the cure!!!

    Every day is good and I know the Good Lord will give my family and I the courage, faith, and strength, to face the future challenges… whatever they may be. 

Dan Maloney

P.S. - The following was published in the B.C. Business magazine and will bring you up to date on Dan as of October, 2003.

“I’m sorry, there’s nothing more we can do”

Four years ago, when Dan Maloney began to stumble once in a while, he put it down to clumsiness. It wasn’t until five months later while undergoing his annual physical that he thought to mention the occasional weakness in his legs. When a Victoria neurologist couldn’t pinpoint the problem, Maloney went to Vancouver for a second opinion. There he was told he had ALS, Amyotrophic Lateral Sclerosis. Unlike most Canadians, the 57-year-old salesman with Victoria’s Island Farms Dairy knew only too well what that meant. He had watched as one of his neighbors struggled valiantly with the devastating neurological disorder.

As it progresses ALS slowly takes away a patient’s ability to walk, then his ability to talk and, eventually, his ability to breathe, cruelly leaving the mind and senses intact. It’s a sort of living death. It’s also incurable and its cause remains a mystery. While 400 British Columbians are known to be living with ALS, the true number is thought to be closer to 1,000 as it is commonly misdiagnosed. In Canada ALS now claims more lives than AIDS and its incidence is expected to double in the next 10 years. While world-renowned astrophysicist Steven Hawking has survived it for 30 years, for the majority the average life expectancy after diagnosis is anywhere from three to five years.

As often happens in life, Maloney’s health crisis was accompanied by another huge blow – the abrupt end of his marriage. He spent the next few days crying, talking to his three adult daughters and grieving the loss of his wife and his health. “Of course I felt depressed and lost and I guess I could have sat at home and wondered ‘Why me?’ Instead, I counted my blessings. I had love and support from co-workers, friends and family and had a lot to live for. Somehow I had the sense to contact the local ALS support group and from that moment, life started to look a whole lot better.”

A year after his diagnosis, Maloney reluctantly quit work, which was a tough call for someone who had been part of the Island Farms organization for 38 years. “I was tripping more often, relying on my co-workers to carry more of my workload and was at risk of causing myself irreparable harm. I knew I couldn’t go on.” With his marriage and career behind him, Maloney went to live with his daughter Colleen and her family in the small B.C. community of Salmo.

“When I left work, my biggest surprise was discovering that I had really great benefits; obviously my company knew what I might need better than I ever did. You never think this will happen to you but I’d recommend that everyone look carefully at their benefit package and know their coverage. Life can change in a split second and things like extended medical and insurance suddenly become really important.”

This is especially true for people with ALS. From diagnosis to death, an average ALS patient requires $137,000 worth of equipment (including such things as walkers, wheelchairs, page turners and breathing devices) and 10 times that much in nursing and home support. Maloney has already used RSP savings to convert his daughter’s bathroom and buy a van with a special wheelchair lift. He expects to tap his nest egg further as the disease progresses and he needs additional medications and vitamins, massage therapy, personal care and more adaptive equipment – things that aren’t covered or require some financial contribution by the patient.

A year ago when he began losing strength in his hands and arms, Maloney moved back to Victoria and into the brand new Mount St. Mary Hospital, a 200-bed facility for people needing full-time care. He reconnected with old friends and colleagues and supports fellow ALS patients around the world using a voice-activation system to operate his computer. Despite his considerable physical limitations, Maloney is committed to helping the ALS Society put a human face on a devastating and poorly understood condition.

According to Island Farms CEO David McMillan, Maloney has deeply touched the lives of those who worked beside him for so many years: “We still keep in touch with Dan; he will always be a part of our family. He’s taught us a great deal about strength and courage and the ability to overcome difficult challenges. Dan truly is inspirational, and we all feel very lucky to know him.”

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