The ALS Diagnosis Part 2

The pier on Carrie Bow Caye, Belize, "my happy place" posted on FB, May 2016

          

After the deflating visit with the neurosurgeon, I did more research on what I might possibly have. I came up with a few potential diagnoses, one of which was ALS. On April 1, when Chris was on a field trip with UC Merced students, I watched the movie “Trans Fatty Lives” about a young man with ALS who filmed his early experiences and made a full length movie about having this disease. I cried as I watched this, alone in Mariposa. No one wants to hear an awful diagnosis like this. I would bring it up with friends, my sister-in-law Judy Hurley, and Chris—no one wanted to accept that this was a possibility.

         We drove to San Francisco the night before my medical appointment, staying overnight with Charles and Lauren, who were concerned friends of long standing. Arriving at 10 am in the doctor’s office, we were ushered in to meet Dr. Richard Cuneo, white-haired, senior doctor with a patient, calm attitude. He examined every inch of my body for the next hour and a half. Around noon time, he asked, “Can I send you to see another few specialists?” Of course, we said.

         The next two teams of doctors inserted 2-3 inch needles into every joint in my legs and arms, then attached electrodes to send pulses of electricity through my body. I lay on the examining table, a small, shriveled, scared person in a flimsy examination gown, inflicted with the pain of needles being pushed into all of my joints. The doctors huddled over their computer screens looking at the results of the tests and nodding their heads. At 4 pm, when the tests were completed, Chris and I returned to Dr. Cuneo’s office overlooking the city of San Francisco.

         “The results are in”, he said slowly.

         “I want to know what I have. Don’t hold back.” I said.

         “I won’t”, he paused. “You have Lou Gehrig’s disease, or ALS.”

The floor dropped out from under me. The room swam. Chris immediately gasped and cried. I knew it—the worst was now known. A life completely different than what I’d known was starting.

         I then entered into another tough period—telling family and friends that I had an incurable disease. We called Evan first from a fast food restaurant on our way back to Mariposa. As a medical professional, he took it calmly, asked a lot of questions, and said he’d be there for us. Dana was working and living on an organic farm in Catheys Valley, a village nearby Mariposa. When she saw our car drive up, she came up from the garden, soil on her feet and knees. We all hugged each in a ring, then told her the news. We all cried. My heart went out to her. My emotions were completely spent. The next day, calls went out to my sister, my brother, then my mother. Chris called his sisters. Steelie and Seth both called and texted. They wanted to know. The word was out.

Marilyn, Dana, Evan, and Meghan's sister Ashley Kneale, after UCSF 3rd visit, July 2016

         We returned to UCSF three days later to meet with the ALS care management team and the attending physician, Dr. Catherine Lomen Hoerth. ALS clinic days are essentially medical speed-dating with physical and occupational therapists, social workers, nurses, and the doctor. A respiratory therapist measures your capacity for breathing. Mine was at 75% of normal breathing for someone my age. It was a whirlwind. Afterwards, we drove to our vacation home in Sea Ranch, which overlooks a rugged part of the California coast. We returned to UC Merced and Mariposa a week later to continue with starting the process of reconciling an active life with one of dependence and decline.

         Finally, I gathered my lab group together and told them the news. One of my best students, who I’d known since my first semester at UC Merced, Bobby Nakamoto, had tears in his eyes. His response was so important to me—you just can’t imagine how it feels to see suffering in other people’s faces. My reaction, then, is to help them feel better. Over time, I’ve gotten pretty good with this.

We went camping in the Tetons and Yellowstone, July 2016

         Evan came out to Mariposa from Washington DC in early June. We filmed several short clips of the Ice Bucket Challenge and posted them on Facebook. The word was now out to my larger community. I took a much-needed breather with family, enjoying Yosemite National Park, and some fun times. I could still walk, move, and use our home fully, but the naiveté of the past 18 months was stripped from our family’s psyche. We were dealing with a major change in our dynamic. This was a silent crisis of major proportions. There is no rational reason why I have got this disease. Why not me?

Mariposa "Sessions" talking to friends and recording: Seth, Bobby, Matt McCarthy, Justin Yeakel, Marilyn, Paul Koch, January 2016

Why me? ALS Diagnosis Part 1

        

Brian Fry and Marilyn, Kiel, Germany, Nov. 2014: 1st Symptom

 After injuring my knee (ACL and MCL ligaments were torn) in 2005 and the subsequent recovery from two rounds of surgery, I became a physical fitness buff, running 5k races several times a year, participating in track meets, and working out with my trainer, Anthony Segun Sokenu, three times a week. When we moved to California, the training stopped, and I found myself spending more time commuting from Mariposa in the foothills down to UC Merced in the Central Valley. We spent our weekends hiking in Yosemite or other natural areas, and I often jogged around our “block” –a 1.25-mile run.

         In November of 2014, I was in Kiel, Germany, attending an isotope conference for anthropologists. I was walking to the meeting from my hotel with Noreen Tuross and her postdoc Linda Reynard. I was dressed in a sharp black dress, purple woolen jacket, and low-heeled purple boots, when suddenly my ankle buckled. I landed hard on the ground. Noreen and Linda helped me up, and we went on our way. The walkway was made of cobblestones, and I blamed the boots and the cobblestones on my fall. Weirdly, I fell two more times before reaching the conference, then flanked arm in arm with Noreen and Linda.

         I walked home in stocking feet and gave away the purple boots. My ankle felt weak after the falls, but beyond that I seemed fine. In December, our family took a trip to Thailand for an adventurous vacation. I had a difficult time climbing into some of the boats that took us snorkeling. On a hike that turned out to be much longer than Chris and I anticipated, my legs almost completely failed me. I ended up doing a crab walk to get down some of the steeper hills. Back in California, I was walking slower than normal. Chris chalked it up to my “getting old”. I was trying as hard as possible to keep active. In the University gym, when I went to lift weights, I was unable to lift the 40 pound bench pressing bar—a student had to lift it off me. I had previously been able to bench press 110 pounds, so this was a nasty surprise.

Marilyn at the local prison- filtering charcoal, Ethiopia, June 2015

         In summer of 2015, I took two international field trips to very remote places. In May and June, I took my first trip to Africa, deep in remote northern Ethiopia with colleague and friend Valery Terwilliger. I brought my personal luggage and one large action packer of scientific collecting gear. I had difficulty lifting the action packer, so needed to rely on others to help with my baggage. In Ethiopia, we went to the field every morning around 7 am until 5 or 6 in the evening. It was customary to hire local men to do the hard digging. So mostly, I sat on the ground in ravines surrounded by sheep and goats, labeling and bagging soil samples. I managed fine, but it required concentration to make sure my ankle didn’t buckle. Valery was concerned about my seemingly limited physical abilities and took great care to see that my trip was safe.

         In August, Chris and I joined some of the old AMASE team—Steelie, Liane Benning, Ivar Mitkandl—for a final journey back to Ebbedahlen, where we had been in 2004 and 2005 investigating a rock outcrop containing blueberry like formations similar to those found on Mars. This time, we’d be backpacking in, setting up camp with polar bear trip wires around us, and hiking about 2 km to the field area each morning. While in Longyearbyen, I slipped on some fine gravel and fell—nothing too bad, but again, a fall is a fall. I felt my age, then 63, and people helped me in and out of boats and with my pack. However, after carrying the pack only 200 meters, I was unable to go any further. Chris took most of the heavier items from my pack in his pack; Steelie lifted the pack onto his front, while continuing to hold his on his back. We continued the 2 km to our campsite.

Hiking in Svalbard, Marilyn with green jacket around waist, August 2015

         I was using hiking sticks when walking, but had been a bit unstable when crossing boulder-strewn Arctic creeks. Liane and her student, Stephie, grabbed my arms and helped me across the difficult areas. One morning, at a particularly steep hill with loose gravel, my ankle buckled again. Ivar and Chris caught me and pulled me to safety. I blamed my boots—again—for not being sturdy enough to keep my ankle supported. I spent the day sitting on the outcrop, cataloging samples, but took it easy. I made it in and out of the field area for the five days we were there, but struggled on the walk back to the shoreline where we were to be picked up by Zodiac boats in the morning. It was a special trip for me--now even more special knowing that I can’t go back there again.

         In September (2015), I met with Dr. Reddy, my family doctor in Merced, and asked to have physical therapy for the ankle. He thought, then asked, “How do you know it’s just your ankle?” and ordered X-rays of my foot, ankle, and lower spine. I continued to fall—while lawn mowing, getting in an elevator, trying to walk over a short step, hiking on a trail. By December, it was difficult to walk and carry a small daypack with a computer inside. An MRI revealed that I had spinal stenosis—narrowing of the spine, which was possibly pressing on and affecting the nerves in my legs. This diagnosis was troubling, but there was the possibility of a surgical procedure that might cure it.

Marilyn, Svalbard, 2015

         At the end of February 2016, I managed to get an appointment at UC San Francisco to see a neurosurgeon. Armed with complete MRI scans of my spine, Chris and I hoped for good news. The doctor watched me walk across the small office; he looked at the scans. Slumped in a small chair in the corner of the room he said, “It’s a red herring.” I was flabbergasted! What did he mean by a red herring? “I think this is something else” and left it at that. We left UCSF feeling confused and alone.

         I continued to ask my doctor to help me—help me!--not just refer me to others. He was stymied. In May, I was attending a UC Merced building committee meeting limping in with my cane, laboring to get into a seat. At the end of the meeting the Provost Tom Peterson came over to me, “I see you struggling. Would it help if we could get the Chancellor involved? She could call UCSF on your behalf.” I was relieved and readily said, “I welcome any help I can get!” That evening, I wrote to Chancellor Dorothy Leland about my symptoms and challenges. Within 24 hours, I received a call from UCSF asking if I could come in the following Monday or Tuesday. I chose Tuesday.

I climbed all the way up to the top of SF Giants stadium--exhausted, May 2016