Ladies and gentlemen, thank you very much for inviting me to come to this meeting to be a witness.
My name is Melanie York. I am 56 years old and I am living and dying with ALS. Prior to my diagnosis in September 2008, I was fully active and passionately engaged in life. I was an award-winning television producer at YTV. Always full of adventure, I was an avid traveller who loved to scuba dive, hike, and motorcycle, and on my quieter days, paint, read, and cook.
All of that joy in life is now gone. My arms and legs do not function. I have become totally dependent on others for my care and the simplest of needs. I cannot feed myself or hug my family, and I am so vulnerable that I cannot be left alone. ALS constantly challenges me to be courageous in the face of this devastating disease. At night I pray that I will wake up the next morning without further loss of function. I live daily with exhaustion, depression, and raging frustration. While my body is being stolen from me, my mind, spirit, and heart have to watch. Perhaps that is why ALS is akin to being buried alive.
Adding to the physical and emotional hardships of this illness are huge financial burdens. In 2009 I spent close to $60,000 from my savings on costs directly related to ALS, which included electric chair lifts, full-time care, alternative treatments, and home modifications. ALS moves at locomotive speed, and subsequently, six months later, I am now forced to move again, into a home that can satisfy all my long-term needs, necessitating my partner and I to incur hundreds of thousands of dollars of debt. All ALS patients face incredible financial challenges, giving rise to the phrase “ALS is the bankruptcy disease”.
I am kept alive by a caring team of people, including family, friends, salaried caregivers, and my partner, who has reduced his workload to care for me. Though I visit a Toronto ALS clinic and have only limited access to a multidisciplinary team, it is my caregivers who support and care for me 24/7.
Education for support people is sorely lacking, and burnout is inevitable. I believe that the role of the caregiver needs to be fully acknowledged and redefined when dealing with chronic illness. To that point, I suggest that the federal government expand its policy on compassionate care to better reflect the needs of those who are chronically ill and those who care for them. The current policy of six weeks off in a six-month period is totally inadequate. We need to be more flexible and responsive to the realities of caring for those we love, allowing for partial weeks over a longer period of time rather than just blocks of weeks. Another viable suggestion could be a period of 26 weeks, accessed over a 52-week period.
There is no question that the training and mobilization of caregivers is essential—absolutely essential—to those living with ALS and other neurological diseases.
I have joined the board of ALS Canada because I have always had a strong voice. Now is the time for me to use that voice, as ALS will take that soon too. The clock is ticking very fast. A cure for ALS depends on research, and research depends on money.
Thank you very much.