An ALS Diagnosis Sparks Advocacy on Medical Aid in Dying

By Bobbi Jacobsen

Head of HofMN's Action Team on End-of-Life Issues

When you receive a diagnosis of ALS, or amyotrophic lateral sclerosis, your world closes in on you so quickly, you feel like you might suffocate right there in the doctor’s office. For me, it was late on a cold December afternoon in 1996, and I couldn't get out of the Mayo Clinic fast enough. 

When my feet hit the sidewalk, I was gasping for air, fighting back tears. Eventually, I found myself in a liquor store wandering the aisles, searching for something, anything, that might take away the overwhelming fear I was feeling. 

I exited the store still dazed, without a purchase, and headed for my mother's house a couple miles away. She had dropped me off mid morning for what was my third and final day of rigorous tests to determine, once and for all, what was wrong with me. I was instructed to call her to pick me up, but I needed time to process the news I had been given. 

Rewind about 10 years, when I first thought something was haywire in my body. My GP discovered I had an underactive thyroid and wrote me a prescription. Some months later, he sent me to an allergist, who determined I was suffering from environmental allergies and wrote me a prescription.

A few years later, after extensive electromyographies (EMGs), nerve-conduction studies, an MRI, and blood and urine tests to eliminate the possibility of other maladies (infectious diseases like HIV, human T-cell leukemia virus, and West Nile virus, and neurological disorders such as multiple sclerosis, multifocal motor neuropathy, and Kennedy’s disease), a neurologist diagnosed me with myasthenia gravis, and wrote me a prescription. 

Somewhere along the way, I was referred to a psychiatrist because I exhibited symptoms of anxiety and depression (which were later determined to be PBA, or pseudobulbar affect), and he wrote me a prescription, then a different one, then another. All this time, I was under the care of the same GP, who eventually said I should go to the Mayo Clinic. 

At my next appointment with the shrink, I told him I was headed to Rochester to see if we could figure out what the heck was going on. He told me, “Well, we know you don't have ALS, because if you did, you would be dead by now.”

But he was wrong. At the time, there were two clinics in the Twin Cities area that specialized in ALSone under the umbrella of the Muscular Dystrophy Association at the University of Minnesota, the other the ALS Center of Excellence at Hennepin County Medical Center. I attended support groups sponsored by both clinics. They presented an opportunity to not only learn about this rare and weird disease, but also to connect with other PALS (People with ALS).

On New Year's Eve, a year after my diagnosis, I got word that one of the people from the U of M support group had died. I was completely devastated. We all know that this diagnosis is a death sentence, but the reality of it knocked me for a loop. Slowly, one by one, we would lose support group members; another would join and take their spot at the table. 

After a few years, instead of asking, I became the one answering the questions of the newly diagnosed. Often I would inquire what had happened to someone who seemed to be doing so well and was suddenly gone. The response was often: “Someone ‘found’ her.” One year at the annual Walk to Defeat ALS, I overheard a daughter of a PALS I had asked about telling an ALS Chapter staff member, “Sometimes I think the way my mother did it was the best for everyone.” 

That's when I realized that those who were gone "suddenly"had ended their own lives. When the diaphragm muscle ceases to function, a PALS must make the decision whether or not to go on a ventilator; few make this choice. After I read an obituary in our small-town newspaper of a classmate who had died from ALS, I sent a note offering condolences to one of her children. We corresponded by email for some months, and she shared with me how difficult it was to watch her mother basically suffocate to death. 

One PALS I knew chose to live on a vent because he was determined to live as long as possible so his mother would not have to suffer the pain of losing a child, as he had when his son died. He suffered many heart attacks and finally succumbed to one after several attempts to revive him. 

I can't even count the number of PALS who died from pneumonia or respiratory failure. One I’d known for years had a stroke. His way to be done with a certain-death diagnosis was to refuse food and water; it took him three weeks to die and my heart broke again. Then there was the brilliant mechanical engineer who, after a few years in an assisted-living facility, ordered drugs online to end his life. His mother-in-law told me that after the third attempt. he was moved to a more secure facility where “they could keep an eye on him.” 

By this time, I had quit going to support groups. It was hard for me to meet people who I knew for certain were going to die. By the time I was a 10-year survivor, everyone looked to me for answers to save them, and I had none.

Somewhere along this journey, my husband and I talked about moving to Oregon, at the time the only state to offer a legal alternative to the most certain painful death I was facing. I decided I could not leave my kids, especially my grandson, who was just 14 months old when I was diagnosed. Some days, he was my only motivation to get out of bed. 

If there was ever a possibility of Minnesota passing legislation like Oregon’s Death With Dignity Law, which allows terminally ill people to self-administer medication to bring about a peaceful death, I knew I had to get involved. When I got wind that Sen. Chris Eaton, DFL-Brooklyn Center, was planning to introduce such a bill in March 2015, I knew I had to be at the hearing at the Capitol.

There I met Rebecca Thoman and Janet Conn from Compassion & Choices Minnesota, a group that works to improve care and expand options for the end of life. About a month later, C&C offered a screening of “How To Die In Oregon.” I had seen the movie a year before on HBO. I knew how powerful it was and I needed my family to understand why this work was so important to me.  

I began attending monthly meetings of C&C MN to become informed and learn how I could best help. When The League of Women Voters held an information panel on the legislation in Sen. Eaton's district, I rounded up supporters to attend. I attended events in my district with panels of political candidates to ask for their support of the legislation. 

When invited to testify at a Senate committee hearing in April 2016, I did not hesitate. Unfortunately, there was so much protest from people, including religious groups, who viewed the legislation as “assisted suicide” that Sen. Eaton decided to withdraw the bill and rewrite it. Because of the publicity from that hearing, I was featured in the West Central Tribune and interviewed by Rana Kamal for her WUCW Sunday show “Our Issues Twin Cities.”

When Sen. Eaton introduced the revised “End Of Life Option Act” last March, I was honored to present my story to explain why I support this legislation at the Capitol, speaking through a computerized voice on my iPad. Andrew Wig of the Sun Current was there and interviewed me for an article that ran on the front page.

Since the revised legislation was introduced, I agreed to chair the Humanists of Minnesota Action Committee on End-Of-Life Options. I’ve attended a series of online coaching conferences and attended local training sessions sponsored by Compassion & Choices. HofMN members were instrumental in working at their neighborhood festivals and street fairs this summer and staffing the Compassion & Choices booth at the State Fair. Some have joined one of the C&C MN Action groups, organized mostly by state congressional districts. 

As we approach the new legislative session, we will be contacting our senators and representatives to urge them to support SF 1572 and the corresponding House legislation, HF 1885. 

I am seeking a co-chair for the HofMN action committee, as well as well as for the Compassion & Choices Minneapolis Action Team, which includes Minneapolis and Richfield districts. Because of my ALS, I cannot speak and need someone who is willing to step up and be my voice. If you are at all interested in this issue, please contact me. Thank you.

Bobbi can be reached at bjjacob67@gmail.com.

Photo: Bobbi with Sen. Chris Eaton.