|Shopping at Costco prior to Wedding Renewal, 2019|
Up to this point, I’ve avoided attending ALS support group meetings. They have been sort of inconvenient to attend in some sense, but honestly, I have been avoiding meeting other people with ALS. I am curious about how I’m faring relative to others, but seeing people worse off and further along in the disease progression is frankly depressing. On the other hand, seeing PALS (Patients with ALS) that are still easily walking points out to me how far I’ve gone down the disease’s path myself.
About a month ago, the family—Dana, Evan, Meghan, and Chris—signed up for an afternoon information session on ALS held at Cedars Sinai Hospital in Beverly Hills. I told everyone that it was too much for me to travel into the city; I’d be too tired; they could go and let me know what they heard. But as the week wore on, I could see it was important for everyone that I pulled myself together and went along.
Meghan, my daughter in law, works at Cedars Sinai Hospital as an RN in the kidney and liver transplant unit. After her intense 12 hour shifts, she likes to decompress by telling us, in broad terms, about her day—the challenges, the glorious moments when a patient walks after surgery, the medical things she’s still learning, and how she feels about nursing. If I land in a hospital, I’d want Meghan as my nurse! I told her that it bothered me that I was touring her hospital not just for fun, but as part of the ALS experience.
So, Saturday morning I began my 3+hour regimen to get myself ready to go out into the world. The feelings I have about my situation welled up and overflowed. After getting dressed, I sat on my bed, listened to the Spotify tunes that I’d downloaded, and let myself grieve. The tears rolled down. I pitied myself. I let myself wallow in sadness. I knew the day would challenge my strength. How sad that a family outing was to a hospital to listen to people talk about a debilitating, destructive disease. And, I’d be in a room all afternoon with other PALS and would need to confront my vulnerability head on.
Traffic was heavy on the trip from Riverside to Beverly Hills. We saw the brilliant downtown LA skyline as we sat in bumper-to-bumper traffic. As we turned off The 10 freeway we passed through the funky neighborhood near the freeway to the tony environment around Cedars. I was wheeled into a packed auditorium about halfway through the first hour of talks.
A young(er) woman was discussing genetic testing. Because my type of ALS is called sporadic—not familial—I’ve been told there is no need to do any genetic testing. But I sense things are starting to change from this simple explanation of what genetic testing will get you since I was diagnosed nearly four years ago. Scientists have been slowly realizing that ALS must disrupt the biochemical pathways called The Central Dogma.
The Central Dogma, as it is now called by some, is the transfer of biological information from DNA, that codes genes, to RNA, that codes proteins, to proteins, that do the cell’s work. Although I did not inherit faulty DNA from my parents, something—somewhere along the line—goofed up the pathway from DNA to RNA to proteins that make my nerve cells function improperly. These are changes in epigenetics, a term that applies more to how DNA is “turned on” to start the protein building process. In the 1970s when I learned biochemistry, this sort of science wasn’t well developed at all. Now, its all the rage and this is where the big progress will come in finding drugs that slow or stop ALS.
|Dunking into "cold tub" Mariposa, 2019|
I looked around the room with apprehension at first. I didn’t want to stare. It was clear who the PALS were and who were their caregivers. Many PALS came with just one other caregiver; some, like me, had their whole families with them. ALS can strike in two basic but very different ways: it can affect how you walk or it can affect how you talk and swallow. I have the type that affects walking and lower body strength. Others in the room had the “talking” type, which was evident when they asked a question. “Whhaat is the chaannce that theerre will beee a druggg forrr mmme?”
As the afternoon progressed, I forgot about my reticence to come to the symposium. I was in a room with my new “PALS”—and a roster of speakers who were devoting their lives to cure my disease or help me live as decent a life as possible. I got into it.
I learned about palliative care—care by a doctor who is responsible for making sure your life is as good as it can possibly be given the circumstance. I hadn’t been aware that such doctors were part of the ALS medical strategy, but it makes perfect sense. The past two weeks I have been struggling with increasing problems and for the first time, I was overwhelmed trying to get help.
In a week or so, I’ll be fitted with a non-invasive breathing machine to wear at night to keep my blood oxygen levels at reasonable levels. I’ve been lucky to avoid one of these noisy machines with its tight-fitting mask so far. Then, I’ll be wearing a heart monitor for 30 days to see how my heart is adapting to the breathing stresses. I can feel my heart jumping around, so to speak--going fast then slow even when I’m laying in bed. I didn’t expect ALS would affect my heart…At the UCR campus this week, it’s tougher than even in October. My left foot shuffles rather than lifts, which is a problem on carpet and asphalt. Retirement is coming at the right time.
There were a few highlights: I met Kathleen Kelsey, from the Golden West ALS chapter. She will be my new ALS Foundation case manager. We’d talked on the phone the week before, and she will visit our house in Mariposa and help Chris and me out. She’s been making phone calls to find a physical therapist and an occupational therapist that can evaluate me where I am today—not where I was a year ago. I especially enjoyed listening to three high-profile physicians at Cedars and Mass General Hospital that told the lay audience about new drugs and new approaches coming down the pipeline.
Many people are very excited about stem cell research, which could revolutionize ALS treatment. In a nutshell, stem cells—cells that have yet to differentiate and turn into specialized nerve cells—are taken from a PALS, turned into cells that are critical for proper nerve functioning, then surgically implanted back into the patient’s spinal column. It’s a promising treatment, but not ready for “prime time” yet. The treatment works best with younger patients, so I’ll probably be out of luck. A second development—platform clinical trials—in which three to five new drugs can be tested within one study are starting in a few months. This process, which has been used for finding new cancer treatments, will finally be used for ALS studies. Last, and what excites me, is a larger, broader type of study that looks at compounds in PALS’ blood and urine that could prove to be markers for ALS. At present, there are a few of these “biomarkers” but not enough data to understand the disease in its entirety.
Being in the room with other PALS brought home clearly the heterogeneity of this disease. Not only are there two basic ALS types, but probably when all is said and done thirty or forty different manifestations of the disease. It is my opinion that as more PALS are tested for biomarkers, epigenetic profiles, and exposed to more clinical trials, something real is going to happen to finally treat, not just manage, ALS.
Will these new developments be in time for my journey? I seriously doubt it. But I’m intrigued by what’s happening at this point in time (2020) relative to the insights into ALS even as recent as 2016. I’d grumbled the weeks before about the ALS foundations—what good had they done me? They seemed more interested in fundraising than helping out. That feeling changed Saturday meeting my new care manager and listening to the devoted people spending their days doing new, complicated biochemical studies to cure my disease.
I’m jumping online—right now—and donating. You don’t need to pour ice cold water on yourself to help out. And if you haven't seen Evan and Meghan's video, the link is below.