What is my connection to ALS?
As most of you know, I have been a bedside nurse in the neuroscience units at Massachusetts General Hospital for the past eight years. Through my time at the bedside I have cared for countless patients which include those diagnosed with ALS (amyotrophic lateral sclerosis). I have met each of these patients diagnosed with ALS at different points in their journey and have been touched by each of them.
The patients with ALS I have cared for have been admitted to the hospital for a variety of reasons. Unfortunately, by the time they need medical attention at the level I provide, they have progressed into their disease process and have lost some part of what makes them, “them” – whether that be their voice, their ability to move or their ability to breathe without a machine.
In all my years caring for those with ALS, two points have become evident. One, ALS patients and their families have the most incredible strength. They are at a disadvantage but continue to live every day with incredible grace. The second thing that strikes me in caring for those with ALS is the incredible synchrony between patients and their caregivers, it’s unlike any other relationship I’ve seen. The strength of their caregivers, ability to advocate and patience is unreal.
Despite the incredible advances in the medical field of ALS, there is no cure. I have participated in many multidisciplinary meetings with ALS patients and their caregivers in which difficult decisions have been made regarding end of life care. Participating in such meetings are emotionally difficult and it is during those times I wish more than anything that a cure for ALS would be created so these conversations would not have to be held again.
Why am I running the Boston Marathon?
Running has become a passion of mine and running the Boston Marathon has been a dream. Though 26.2 miles seems daunting, it is nothing compared to the battle each ALS patient and their families go through on a daily basis. It is such an incredible honor to be chosen as a member of the Team Challenge ALS this year and I’m looking forward to fundraising for such an incredible organization.
This year The ALS Association Massachusetts Chapter is proud to be celebrating its 9th year participating in the John Hancock Marathon Non-Profit Program. We are so grateful for the opportunity to take part in this prestigious event and help continue to raise awareness of ALS!
ALS is a neurodegenerative disease that affects the nerve cells in the brain and spinal cord which eventually leads to muscle paralysis. The disease is always fatal. There is no cure and people with ALS live an average of 2-5 years after diagnosis.
Our vision is to create a world without ALS. Our mission is to discover treatments and a cure for ALS, and to serve, advocate for, and empower people affected by ALS to live their lives to the fullest. Our core values are COMPASSION, INTEGRITY, URGENCY.
The ALS Association is the largest funder of non-government sponsored research in the country. Our care services programs help patients and family members by providing supports groups, equipment loans, assistive technology, insurance and benefits counseling, and much more. We also advocate at the federal level for funding and laws to benefit ALS patients.
The money raised by the runners of Team Challenge ALS will be used to support all of these programs and hopefully lead us closer to creating a world without ALS!