Linda and I have to all, but immediate family, project our life as being relatively normal, despite my ALS. We thought this important to our families’ mental health and quality of life and until recently was maintainable.

Prior to a few months ago, my struggles had been in small degree changes in strength of my hands, arms, shoulders, swallowing muscles and ability to speak. For so long, the variations in my strength impacted, for the most part, only moderately what I could do. My hope since diagnosis has been to continue to do all functions I’ve always done, albeit slower, as we searched for a remedy.

Over the last few months my symptoms have progressed to the awkward stage. Of all the upper body function challenges, losing my ability to speak clearly has been the most life changing. Even though my thoughts are complete, getting all the words out intelligible has become daunting. Speaking has become a process and a labor.  All thoughts to be spoken go through a quick, in mind, editing down to a manageable word count.  My mind goes through the process of determining the maximum word count for the moment, as speaking strength changes throughout the day, while simultaneously searching for words that consolidate narrative, and have the fewest syllables. All this in hope I’ll be understood.  My guess is that I’m at 70% success. The mental gymnastics are tiring and frequently I feel awkward in fluid conversations. The effect is diminished comfort in social situations. The literature on ALS warns that social withdrawal is common. I’m now able to understand why. I’m thinking I’ll take this time to become a better listener.

After speech, fatigue is the next big drag. I’ve always had energy to burn. If I was a young boy today I’d be tagged as ADHD. Back in my day it was called hyperactive which my Mom’s doctor prescribed me running around the back yard to cure.  No happy pills for kids back then. Nowadays I get eight hours sleep an hour or two nap and any activity over a couple hours can slow me down pretty good. It's pretty much the same affect as my Dad’s 75 years of living are having on him.

Beyond less talking and reduced doing, it’s the small things that make ALS a persistent pain in the posterior. A good example is that I’m on my third adjustment for turning the key over to start my car. At times, I’ve had to ask someone to turn my car on for me. The puzzled looks as I drive off are precious. I have similar scenarios for pumping gas, cutting food, getting dressed, making coffee… it goes on and on.

Until my symptoms change designation from chronic to cured, my functionality will become more and more a team effort.

In May of this year we switched from the alternative treatment plan of the previous two years. I think I’ve explained in an earlier post that this previous protocol required me taking a boat load of various pills and a couple of extracts several times a day. All designed to boost the immune system, remove toxins or fight chronic lymes disease. The decision to move to another plan is steeped in the notion; one long held by Linda, that a nearly indestructible chronic lymes disease (CLD) is the bases for some neurological disorders and possibly mine. So this new plan will more directly target the elusive and believed chameleon like cause of CLD.

The “Cowden Protocol”, recommended by our Charleston alternative doctors, has roughly eleven thousand people who have or are using it with a reasonable rate of success. Yet, Doc Cowden was clear that ALS was by far the least successful under the program. This underscored what we realized early on, that killing ALS is an underdog endeavor. An endeavor with a David and Goliath like need for something jaw dropping to happen. With little hesitation we jump in for the recommended six month program.

Receipt of the first box of stuff gave me pause. We received a box with twelve one fluid ounce bottles of various herbal supplements and extracts and a couple of bottles of herbal pills. Along with two pages of instructions and twenty four pages of, at first glance, was thought to be a simple dispensing chart.  I thought, Hum? And then it hit me, Doc Cowden’s some kind of mad scientist. On closer inspection the pages read like a matrix, each box on the page laying out the potion to be mixed and the moments each day they are to be taken. I’m to this day unsure if Doc Cowden is mad or genius, but he or someone with him is clearly PhD level smart to figure out the potions formula and sequencing of their use. I must admit that from the back of my mind I occasionally recall the old saying; if you can’t dazzle them with brilliance then baffle them with BS. One hundred and sixty days into the program we are slightly more baffled then dazzled as my ALS persists. But the protocols fine print was forthright and clear that some folks might require up to four rounds before success. So with the faith of an Apostle that ALS can be overcome; we press on.