My name is Grace Marian, and I learned this week for the second time that I most likely have ALS. This information came from an ALS Specialist, Dr. Bali, at Tufts University Medical Center in Boston. The first time I heard those words was on January 20 from my neurologist, Dr. Belden, in Portland, Maine.
I say "most likely" because ALS--Amyotrophic Lateral Sclerosis, also commonly called Lou Gehrig's Disease--is notoriously hard to diagnose. The process of diagnosis, or at least what I have experienced, is that the specialists are mainly ruling out other explanations for why I am progressively losing my ability to walk, get up from a chair, and why I am exhausted after doing what used to be small tasks like taking a shower and getting dressed.
ALS is a disease I will probably die from if something else doesn't get me first. Most people live 3-5 years after diagnosis. There is no cure, and no viable treatment unless you count the medication Riluzole which appears to have no value beyond keeping patients alive for a couple of months longer and enriching the pharmaceutical company. I also just read of a new medication that was approved by the FDA recently, which according to Forbes is extremely expensive--$145,000 per year (four times what it costs in Japan), doesn't extend life, but slows down the symptoms. I don't think I will start a GoFundMe campaign for it soon.
ALS is a disease of the motor neurons--the nerves that function as a conduit between the brain and spinal column and the voluntary muscles. Normally, if you need to walk somewhere, your brain sends a message to your legs and feet to get moving. With ALS, the motor neurons die off and the muscles become flaccid and useless because they aren't getting the message to move.
When I first got symptoms in September-October, 2016, I was living in Botswana, a country in Southern Africa, and volunteering with the Peace Corps to help them reduce HIV transmission. At the end of our 12-week training period, I fell twice in three days while walking on the road between my homestay and the training facility. At first, I made excuses--the roads were rocky, maybe it was the change in diet, or whatever. I was much more focussed on becoming sworn in as a Peace Corps volunteer and going to my new worksite in Serowe.
When I moved to Serowe, the falls continued, and it was clear that they weren't typical falls. In the past, when I tripped, I could usually either catch myself or have time to break the fall. With these falls, I came down hard on rock or hard asphalt. I broke my glasses with one fall, and had black eyes after another. I finally called the Peace Corps Medical Office.They asked me to go to Gaborone, the national capitol, for an evaluation. The trip to Gabs extended to two weeks as the Peace Corps sent me to several specialists, none of whom were able to figure out what was happening. Meanwhile, my walking got worse, and I began to use a cane. My balance was way off, and the fear of falling didn't help either.
One doctor thought that my problem could be related to a side-effect from Malarone, an antimalarial drug I was taking. I stopped the Malarone, and got marginally better for a few days. I lobbied the Peace Corps to clear me to return to service, and they did, but I may have been a victim of wishful or willful thinking, because I stopped improving shortly afterward, and I fell some more, including a face plant on a concrete floor in front of 42 Junior Secondary students.
I returned to Gaborone, and was informed that the Peace Corps was sending me back to the States for a medical evacuation and further evaluation on December 5, 2016.
Although I had been living in Oregon for the past 21 years, I went to Maine where my brother and sister-in-law live in our hometown, Buxton. I assumed that I would find medical care and they would fix me up and I could return to Botswana in 45 days.
I was wrong. The med-evac took longer than I expected, and on January 16, I was medically separated from the Peace Corps. On January 20, I was told by a neurologist that I probably have ALS and would need a second opinion.
Well, I got the second opinion last week, and the verdict is that I probably have ALS, but that the ALS specialist wants me to see a neurosurgeon about some changes in my lower spine. So, we're heading back to Boston next Wednesday to see what's up with that.
It all sounds pretty gloomy, but there are some very positive aspects to this scenario. First, my brother, Allan Hague and sister-in-law, Linda Hague have been extremely kind and generous by opening their home to me and providing assistance when needed. Second, the support and concern of relatives friends in Maine, Oregon, Washington, Botswana, and many other places. As cliched as it looks, I do feel truly blessed. Because of that love and support, I know that my situation will be the best under the circumstances.
