Please read the story of a close friend of mine.
This is why it is so important to fight for this disease and be a part of the battle. I am honored to fight for ALS and also bring awareness to this ugly disease!
On February 12th, 2008 my father and I sat with my mother inside an exam room of the Neurology wing of Beth Israel Deaconess Medical Center in Boston. The kindest physician, Dr. Seward Rutkove, who just happened to be the Chief of the Division of Neuromuscular Disease, spoke to us. I sat behind my mother. I already had tears running down my face before he began to speak. I knew what he was going to say.
ALS, or Amytrophic Lateral Sclerosis, is a diagnosis of exclusion. Other more benign or even pretty devastating diagnoses are ruled out before you are given this one. My mother, a young, vibrant and active 63 year old on the day of her diagnosis, had gone through the mirage of tests prior to this day. Her disease was most evident in her right hand. She was having difficulty cutting fabric…she was an avid quilter and seamstress and had lost visible muscle tone in that hand. She had had a couple falls in the weeks/months/year prior. The fall could always be ‘blamed’ on something else… poor fitting sandals on an uneven surface, or how her sneaker caught on a rug. These events were later proof of ‘foot drop’, another common sign her body wasn’t getting its signals from brain to muscle the way it used to.
That day changed our family’s lives forever. Our family was told what ALS meant, and what it would mean for the coming weeks and months and maybe years. We were told my mother’s new life expectancy was 2-5 years. She didn’t even take more than a multivitamin daily! She was so healthy. She played tennis, walked, quilted, cooked. She watched her grandchildren and cherished her time with them. She never sat still… Until ALS made her.
On that day she was told she had a devastating disease without a cure. This disease would rob her of her life. This disease would take functional pieces of her body away, bit by bit, as her motor neurons died. Her arms would eventually hang by her side. Her head would hang without assistance or a neck brace. She would have a feeding tube placed in her stomach to help her receive her medications and necessary daily calories and could no longer safely swallow. She would have a suction machine next to her at all times to help manage her oral secretions/saliva when she could no longer swallow it on her own. She would be wheel chair bound. She would sit and watch and listen to everyone and everything happening around her. One of the most wicked elements of this horrible diagnosis is that my mother’s brain remained 100% intact. Her body failed around her functioning brain and loving heart.
For her last four and a half or so years, my father became her primary caretaker. He took the exhausting role very seriously, testing the bond and vow of ‘in sickness and in health’ to the limit. They made the most mundane and personal and sometimes humiliating tasks silly and somehow managed to laugh through so much of it. Even when my mother’s mouth couldn’t smile anymore, her bright brown eyes would. He took meticulous care of my mom. It would often bring tears to my eyes and still does to this day. My parent continued to ‘do’ as much as they could, as long as they could. Some things (coming to my house and spending the night to be here for Christmas morning with her grandchildren) became more and more of a production, but they persevered because they knew the time would come when they couldn’t do much anymore. And being a part of these things was what my mom wanted. So we made it happen.
My mother lived 1,772 days from her day of diagnosis. Yes, it was within the expected prognosis. It was considered a ‘long time’ for an ALS patient. She was able to breathe on her own until the day she died, only using a bipap breathing machine at night in the last few months, just to aid in her breathing and take away some of the ‘hunger’ for air.
She had spoken (early on in the disease) that when the time came, she wanted to move her bed out of their first floor bedroom and into the sunroom. That was her favorite room in the house. A wonderful group of Hospice caretakers and nurses were heavily involved by the time that day came. We moved her hospital bed out there and covered her with her early Christmas present, a large warm fleece photo blanket of her four grandchildren. Her eyes were closed and never reopened.
She passed away that very next day, peacefully on Tuesday, December 18th 2012. She waited for me to leave that morning for an appointment, and for my dad to walk out of the room for just one moment. She went on her own, on her own terms, in her sunroom, just as she planned.
I held a great deal of anger during her illness. I felt anger over this ugly disease that has now become a very unwelcome member of our family. I felt angry that it took my vibrant mother from me, and her loving husband and the rest of my family far too soon. I still feel robbed of the relationship I wanted my now teenage children to have with their grandmother. They were her everything. They only had her in their lives until they were 6&8 years old. She left us far too soon.
I hope and pray that a cure will be found soon, before ALS takes someone else’s mother, father, sibling, daughter or son. And I hope you never have to experience this disease.
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!