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!
I am so happy to see you are doing so well. Continued best wishes.
Thanks for your story. I wonder: Were you taking other supplements or even medications while on Protandim? Or was it only Protandim? If it was Protandim in addition to other supps or meds, then how can your improvement be attributed to any one thing?
I had been taking the same medications for a long time with my ALS. Baclofen is a non-narcotic muscle relaxer, tolmetin is an NSAID and Prozac for depression. I am now completely off of these prescriptions. The only thing I changed was taking Protandim as of November 2009. I did not change my diet, but after a year I did start working out which I believe has strengthened the muscles I still have. To have the energy both mentally and physically to work out and then the recovery to do it again are all benefits I believe come from Protandim. I completely understand your question/concern and am a strong advocate of changing one thing at a time in order to qualify the results. In my case, there simply wasn’t any other changes. What is your relation to ALS?
It was so nice meeting you in Orlando. What a fabulous product we have in our hands! You are a miracle. Praise God too for helping you find it!
Aven Rountree in Texas
Thank you for sharing your story Steven. I am meeting with someone who was recently diagnosed with ALS and am eager to share your info with him. I am a LV distributor and am hopeful he sees the relationship of reducing oxidative stress in his body and the benefits involved to improve him both mentally and physically.
Hi Nancy,
It is wonderful that you want to help! Have them read over this article and if they have questions just let me know and we can arrange a three way call with them, okay? All the best…
Hello, I stumbled upon your blog and thought you might want to read this.
I recently published my article on newly researched natural medicinal plants and their potential for treatment of ALS, Alzheimer’s and other neurodegenerative diseases. It can be found at:
http://ayahuascatreatment.wordpress.com/2014/09/01/ayahuasca-ethnobotanical-medicine-for-treatment-of-als/
It is the culmination of several years work, having studied ethnobotanical medicine and the field of neurodisease, making connections between the two in the search for something viable for reversal of the progression of these diseases. I have been strongly motivated by the unfortunate passing of a close friend’s mother due to ALS some years ago. Hopefully, you will find it an important topic. It is currently being discussed on several online forums related to the subject matter.
There is already an ongoing pilot project involving several individuals diagnosed with ALS in Sweden and the United States, and the use and evaluation of the relevant medicine. Although yet on an early stage, noticable symptom relief has been reported by users. Results are being documented, and will be published and presented to the Svenska Neuroförbundet (Swedish neurological council) and elsewhere, in order to create incentive for further studies to be conducted.
More information will be released early 2015.
I wish you a great day, and that you share this information, should you find it interesting.
Regards,
Daniel Gustafsson, Sweden
My husband was diagnosed 3 yrs ago with als you storie was really interesting I m interested in the meds. We r willing to try anything for a longer life this diagnoses is so devistating as we all know how much is this med
Thank you
Sue Jones
Hi There, Thank you for your story. Just to be clear, are you taking the NRF1 or NRF2 or both. We read the alsuntangled review of Protandim and figure it’s worth a try. It seems alsuntangled only reviewed nrf2…Thanks in advance for your reply.
Hi Steven how is your ALS now and are you still using Protandim? I have all the symptoms of ALS and going through the rat race now with testing to get the diagnosis. I am ony 39, father of 4 beautiful kids and husband to a great wife. I don’t want this diagnosis, but I have started taking protandim 45 days ago and no improvement in my symptoms. How about you now?