The Conference

Nervous anticipation and questions seemed to surround me as we flew towards Salt Lake City. What would this “Healing ALS” conference be like? Would it really be helpful? How would I relate to seeing others with ALS who are further along in their disease process? 

We arrived about 9 pm to a cold drizzle and navigated the public tram the fifteen minute ride to our motel. At one stop a soaking wet, bearded, homeless man stumbled in and fell in a seat. He then started mumbling to himself, tearing up train schedules and throwing them on the floor. Poor man! I wondered what trials he’d had in life.

The next day we awoke to sunshine and a picturesque view of the snow capped mountains from our motel window. After a quick worship and breakfast we walked the fifteen minutes to the Radisson where the convention was being held.  

My name tag had a purple ribbon with “PALS” on the bottom (which I learned is a “Person with ALS”). I wasn’t sure I was ready to admit it and be “labeled” with this disease, after all I’d only known about it for a couple weeks. We learned there was about 250 people registered for the conference. (100 with ALS and 150 caregivers and interested others). 

As we entered the meeting hall we saw some people in wheelchairs, a few on ventilators and others you had to look at the purple ribbon on their name tag to tell if they were a “PAL” or not. My sister, Carol, Kevin, and I found a seat by a man who lost his wife to ALS four years ago and has since started a foundation to help those with ALS.  We talked briefly and then the meeting began.

The next three days were packed full of solid, helpful information by an excellent nutritionist, functional medicine doctors, dentists, lay people and eight “PALS” who have actually reversed some of their symptoms of ALS.  (There were only a couple lectures with questionable content). The most remarkable story was by “Mike” who had been on a ventilator and feeding tube for 3 years before his ALS began to turn around and now he is walking and talking almost normally.  Miraculous!

One of the side benefits of going to the convention was meeting all the wonderful people there and hearing their stories.  It was sobering, but the atmosphere was one of hope.

*One 36 year old farmer (just diagnosed a month ago)was there with his pretty wife and 5 month old baby boy. 

*There was a PAL from Las Vegas, with his wife, son and daughter (in their late 20’s) who were frantically taking notes on everything- trying to gain a ray of hope. 

*A competent 18 year old girl flew from India to learn how to better care for her mom with ALS living there.  

*Another man from Texas flew to Nigeria to accompany his very debilitated brother with ALS back to the convention.

We left the convention with many blessings, phone numbers of new friends, and a “boat load” of information to synthesize down to what the Lord would have ME to do.  There were no “silver bullets” or “miracle cures”, but plenty of information, and encouragements to “never surrender”and always keep a positive mental attitude (PMA). I liked the thought shared that “I may have to accept my diagnosis, but not my prognosis!”.

My siblings and their spouses all came last weekend to help us try and make a plan, order extra tests (GI mapping, DNA study, blood tests) and supplements and discus diet and lifestyle changes, etc...It was so amazing to be all together and we shared plenty of laughs amid a few tears. I am blessed!

It’s still quite overwhelming at this point, but I believe we are started in the right direction. God continues to sustain us and overall I feel great and have had no progression of symptoms. I am SO THANKFUL for my TREMENDOUS support system! Thank you to each of you for all the care and prayers.

I know He will make the path clear as we move forward from here.