Amyotrophic Lateral Sclerosis, or ALS, is unquestionably the cruelest of illnesses. It’s a progressive neuromuscular disease that ultimately disables the victims’ muscular functions but leaves their minds intact. People stricken with ALS are acutely aware of their suffering, but can do nothing about it. It’s akin to being a prisoner in one’s own body.
I know all too well about the savagery of ALS. My own uncle, who was truly my father figure, mentor and role model growing up, died from the terrible disease. Helping my family care for the relative was a life changing experience; it inspired me to abandon my career as a Wall Street trader and found CareLinx, a company focused on providing affordable home care for the elderly and the infirm. I wanted to help other families avoid the caregiving difficulties and challenges my family faced.
Tending to a loved one stricken with ALS forever alters a person in ways I can’t articulate. Family caregivers of ALS victims are fraught with depression and guilt, as their burdens become seemingly insurmountable. It all becomes one very bad dream.
One of the most rewarding times after starting CareLinx was when a client who suffered from ALS called me to personally thank me, saying the last year of his life wouldn’t have been possible without the team at CareLinx. I honestly broke down in tears on the phone and thanked him since he knew my motivations behind CareLinx were inspired by my uncle. My team and I were even invited and attended his memorial service and his picture remains up on our office wall as a reminder of what we are really doing at CareLinx.
Janice Kennedy, a former columnist with the Ottawa Citizen, last week published an article in her former newspaper about her sister Sheila Tynan’s battle with ALS. The touching article, “Losing my sister: ALS takes everything but love and memories,” captures the pain and suffering that ALS causes the disease’s victims and families that care for them. The article will definitely resonate with anyone that has cared for an ALS patient or is close to someone who has.
I can’t do justice summarizing or paraphrasing Kennedy’s article, but I can’t recommend it highly enough. It can be found here.
Kudos to Janice Kennedy for publicly sharing her experience and to the Ottawa Citizen’s willingness to devote considerable space to recount it.