Lucky 13!

It’s been 13 years as of February 15th when I received my first diagnosis of ALS diagnosis. Confirmation was March 15th.  Who would have thought I would still be here?  Not many, for sure but I give Him all the glory!

Since my last post with Doc Marvin, we have had hundreds of inquiries regarding my ALS journey and Nrf2 that I believe has helped my progression.  Unfortunately, the recording Jennifer and I did with him can no longer be accessed.  I thought this might be the right time to summarize my experience up to and with the initiation of this Nrf2 activating supplement.

As you know from our “About” page, I was diagnosed in 2001 and told to get my affairs in order as I only had 2-5 years to live.  We were devastated but eventually decided to engage deeply in the ALS community including the ALS Association (ALSA) and the Muscular Dystrophy Association (MDA).  After a few appearances at local MDA events, we were nominated to the national Jerry Lewis MDA Labor Day Telethon in 2002.  Jerry Lewis was suffering with pulmonary fibrosis and was on a regimen of high dose Prednisone inflating his body to twice it’s normal size.  He only got out of his desk chair twice that year: once for his National Goodwill Ambassador, Mattie Stepanek and second for Jennifer and myself.  For some reason, Jerry befriended us and appointed himself our positive mental mentor.  After writing down our phone number live on stage he proceeded to call us every week for the next year or so to make sure we were in the right frame of mind.  God bless you, Jerry.

In 2003, Jerry influenced Parade Magazine to put our family on the cover which you can find on the right side of this post.  When you get that kind of publicity, people find you!  We fielded hundreds of calls from people genuinely trying to help us and for that we are eternally grateful.  There were so many ideas with every pill, juice and berry along with magnets and special mud in Mexico.  It was overwhelming and they all had one thing in common: testimonials.  Now I think testimonials are good, but I am a mathematics major and I needed to have the science that backed them up.  Frankly, the science just wasn’t there and the different approaches would have been cost prohibitive to try them all!

Fast forward to 2009 when a friend introduced a Nrf2 activator.  We reminded him of the details mentioned above as he met the same skepticism as all the other possibilities.  In defense, he directs us to an ABC Primetime Investigative report done in 2005.  Along with the report, he set up a meeting with the formulator of this Nrf2 activator, where we were able to spend almost two hours drilling him on why he thought it could benefit ALS and many other conditions.  The difference was the science behind it all.  I’m not going to pretend I understood everything, but after careful consideration and science review we implemented this little yellow pill in November of 2009.

Now I have been diagnosed four times by four different neurologists.  I also have had a slow progression, but that doesn’t mean I am symptom free.  During this time, my progression dealt me chronic fatigue, lack of energy and endurance, fasciculations, muscle spasms and depression.  I had not lost use of anything in particular, but I did have muscle wasting in my shoulders and upper legs specifically.  I would use a wheelchair and/or AFO’s for malls and airports and be the first to find a chair at a gathering where people tend to stand for hours!

I didn’t notice any ALS related benefit with Nrf2 activation for over a year.  I continued to take it because the science is so compelling that it reduces oxidative stress, inflammation and fibrosis that I felt strongly it was going to benefit me regardless of changes in my ALS.  Then I started having some better days and they came frequently enough to where I had the initiative to work out.  Now that hadn’t happened in a very long time, since before ALS!  The thing that blew me away was the fact that I recovered after that first workout like I think most people my age would and it encouraged me to continue on a regular basis.

Months later I had my annual doctors visits with my primary care physician and my physiatrist.  They both informed me that they saw no progression in the last year and in fact they saw improvement in some areas.  I was quite intrigued with the last statement as I felt confirmation the workouts were beneficial.  Then Jennifer and I heard, “I know your son is a teenager now, but I think you’re going to be around to see him get married and have kids.”  Whew!  We had given up on that dream in 2001 when I was simply hoping Chris would actually have an active memory of me instead of just staring at a picture.  The fact that both of these doctors recognized and validated what Jennifer and I had seen over the last year was liberating.

I had an electric wheelchair, two manual wheelchairs and a walker taking up room in my garage as an indicator of what my life was to be and after those doctors visits we took a leap into our next life.  It was a life that had a future to it.  So we returned the equipment and I started driving again after almost 11 years.  I have completely eliminated my antidepressant and ALS medications but still take one 20mg baclofen (I used to take six!) at night, just in case, to eliminate any muscle stiffness at night that might make it difficult to fall asleep or wake me up.

Now let me be perfectly clear.  Since this Nrf2 activator is a supplement and not a drug it is not meant to treat, cure, mitigate or prevent any diseases.  This is simply my experience as I have done nothing different over the course of my progression.  No special diet, frequency therapy, etc.  I AM NOT CURED.  Mentally, I think I can do anything, but physically I still have fine motor skill issues and my body fatigues when I do too much.  Fasciculations, stiffness and muscle cramps can still appear but are greatly reduced.  My quality of life is simply better.  I believe that Nrf2 activation has allowed my body and mind to workout and recover and I don’t know who wouldn’t benefit from that if they have the ability.

We have been asked quite frequently about my journey and wanted to write it down so more people could access it if they wanted to.  If you have questions about what you’ve read please select the “Contact Form” tab above.  We simply want to give information about a tool that has been helpful for us both physically and financially.  What you do with this information is totally up to you!