Lori Ruhlman's Story
The day my husband Tom was diagnosed with ALS, he called our daughter in Boston to share the news.
She answered her cell phone while on a train, brand new in the city, looking for an apartment before starting a new job and a master’s program.
“Hi Jessica, I have ALS,” he said matter-of-factly, as though telling her he had a cold.
She got off at the next stop, found a bench and sobbed.
His rather abrupt delivery of this news – and his inability to understand why she would be upset to learn her father had a fatal disease that would rob him of his ability to walk, talk and breathe – was just one example we would return to over the months and years, as we tried to understand what was taking this beautiful husband and father away from us, inch by inch.
It wasn’t just his physical symptoms that had taken us to a neurologist. In addition to fasciculations and exhaustion, he had subtle changes in behavior and personality. This man I had loved since we were teenagers had become, at times, a bit of a stranger.
After unexpectedly losing his longtime job as a business executive, he bought a franchise, but lacked the momentum that he’d had all of his life. He missed appointments and made inappropriate remarks to customers.
The renowned ALS neurologist who made the ALS diagnosis told Tom he was on the “slow track” and might run his business for several more years. Yet I could see that Tom wasn’t just losing the strength in his hands, or the lung function he’d had as a lifelong athlete. He was losing empathy and executive function. His doctor seemed disinterested in anything but Tom’s physical decline. I felt isolated and alone: what was wrong and who could help us?
Eventually, I learned that some people with ALS also have Frontotemporal Dementia (ALS-FTD) which causes atrophy in the parts of the brain that are responsible for who we are. By the time we knew this, it was too late to say goodbye. The man who would have understood the diagnosis, planned with me, discussed this with me, and cried with me was already gone.
He lived for seven years after the initial ALS diagnosis, declining slowly, daily, in both body and mind. As his hands failed to let him toss together the creative meals he was known for cooking, his mind forgot the simple steps needed to cook a bowl of oatmeal.
Even as he lost most of his language, Tom never lost his cheerful spirit. He continued to adore our kids, and to love me as the center of his universe.
When I’d hug him before leaving him at home with a caregiver, we would always say “I love you.” Then he would tell me, “I miss you.” And I would tell him with all my heart: “I miss you more.”
Oh how I missed him.
I have learned this: There are no good versions of ALS. It is cruel.
It takes some quickly; it tortures others slowly.
Whether it begins with difficulty walking, or talking, or breathing, it is relentless and scary.
Loss through ALS-FTD is also lonely. It is missing someone who is sitting right next to you.
It is hopeful that in the years since Tom died, more is understood about how these diseases are related. I am grateful that the ALS Association is supporting caregivers who face the many different and unexpected losses that come with the disease. Research, knowledge and support will help shorten that horrible period of “unknowing” – giving families facing ALS-FTD a chance to plan, and a chance to say goodbye.
With continued funding and research, the biggest hope is that someday there will be no need for the untimely goodbye at all.
