Well this wasn’t part of the plan but it is part of the story …

November 5th, 2020, Bill Dixon was officially diagnosed with ALS (Amyotrophic Lateral Sclerosis) aka Lou Gehrig’s Disease. Many of you may know about ALS from the “bucket challenge” fundraiser on social media a few years ago that brought this rare disease into the spotlight.

Currently as far as “mainstream medicine” is concerned, there is no cure and the outlook is grim. Their protocol is to manage the symptoms and the eventual decline. However that’s not to say the medical establishment isn’t trying, with many trials in progress all over the world. We hope to be included in one of these trials but in the meantime, we are not just waiting around hoping to manage decline…. we are currently pursuing all avenues of alternative medicine to heal.

ALS is a disease that doesn’t seem to have one specific origin which makes it that much harder to come up with a cure. It seems to be a combination of things that at some point puts a person over the tipping point. The key then is to root out the individual things that take ones body out of homeostasis and bring it back … heal it. That is our mission.

Brief History –

In about March of 2020, I noticed Bill was having muscle twitching (later became known as fasciculations) in his shoulders and arms. He was unaware of it as it is painless and he didn’t feel it. It was strange and persistent and constant. There were no other symptoms so we waited to see if it would disappear.

After a few months went by and they didn’t subside, Bill knew something just wasn’t right. He was also beginning to have some issues with slurring or difficulty getting words out at times.

In June, we met with a Neurologist in Olympia, WA. The doctor had extensive blood work done, an MRI of his brain and cervical spine, a swallow test, and an EMG (elecyromyography) nerve test. Everything at that time came up normal except we found out the fasciculations were throughout his body. On our follow up in August, the doctor said the symptoms had to progress in order to diagnose anything. No diagnosis good news? Well not really as we didn’t realize with nothing coming of the tests, it just meant it was ruling out other issues and narrowing it down to more and more serious possibilities. This doctor recommended Bill get a second opinion.

In October, he got in to see another Neurologist in Seattle at UW Medicine. The doctor reviewed his past tests, ordered a few more blood tests, and recommended he redo the EMG test that was first done in June. At this time, Bill was just starting to experience some weakness in his left arm and hand and some chewing / swallowing issues along with the ongoing speech issues.

In November on our return visit, the results of one blood test came back positive for antibodies for Inclusion Body Myositis. That is another similar disease that can mimic ALS but is less lethal. At this appointment prior to redoing the EMG, the Neurologist thought that was the diagnosis. However during the EMG he saw changes and abnormalities from the first EMG, and that combined with worsening symptoms of speech and some other ALS related symptoms had led him to diagnose ALS.

WHAT NOW?

This is not the news we were wanting to hear. We were both devastated. When doctors make this type of diagnosis, they don’t know what to say but they’re sorry. Well, most of you know Bill well enough, his work ethic, and his determined personality. It didn’t take long and we were on the search for answers.

That brings us to today. We are currently staying in Phoenix, Arizona with one of our sons and his girlfriend, Jesse and Kirsten. We did some research and found so many more opportunities in the Phoenix area as opposed to the NW. Besides that, it’s sunny and warm here which is very in sync with healing. We immediately made an appointment with the local Mayo Clinic who is currently doing stem cell trials for ALS. We got a 2nd diagnosis from them and were introduced to the ALS Clinic team (neurologist, physical, occupational, speech therapists, nutritionists, etc). We were then also put in touch with the Arizona ALS Chapter. From the ALS Chapter we found out since Bill is a veteran, we should connect with the VA because ALS is a “service connected” disease. We will have to say, that has been such a blessing. The VA has been very responsive and will pay for many of his “traditional” treatments if we choose to use them. They also have an ALS Clinic and a whole team of specialists to help PALS (people with ALS) navigate the illness.

CURRENT PROTOCOL –

What are some of the alternative treatments he’s doing?

Hyperbaric Oxygen Therapy – helps force oxygen into the cells. It can also have a detoxifying affect as oxygen in concentrate can kill off bacteria or toxins. That was a 5 day / week appointment which currently he has tapered off on as he is doing the detox and it seems to be affecting his blood pressure.

Functional Medicine Doctor – several tests to see what could be causing the issue. Again, it’s usually a multitude of things. We have found some elevated heavy metals as well as other pathogens and he is currently on a pretty strict regimen of supplements to rid the body of that. Besides those treatments, Bill already had embarked on a supplement routine to help with any deficiencies.

IR Sauna – I don’t think there are many days when Bill isn’t using the sauna. It is a worthwhile investment for your health. More detoxing happening here.

Neuro Acupuncture – we have a very experienced acupuncturist that comes to our house! She is an RN and has specialized in neuro related disease.

Bill also has a very busy schedule with many specialized groups. Our primary group is healingals.org. What a Godsend! This is the group that gave us hope from the beginning. They work and are part of a community of PALS from around the world who are taking their health in their own hands and working on healing. They explain that a minimum of 50% (probably much more) is not what you do for yourself physically, but mentally. A positive attitude and belief you can heal is key. This has lead us to many inspiring books from doctors who talk about how the body CAN heal, even a disease such as ALS. We meet virtually with the group at least 4 hours a week, spend time doing homework, reading and listening to books, and researching in between meetings. They have a mission to help 200 PALS reverse their disease by 2022. We want to be one of those PALS.

Another group is the local AZ ALS Chapter. They have virtual ALS 101 classes online for those newly diagnosed. The classes inform PALS and their caregivers / families on resources and things they may need to know. Great group of people.

And another group / resource we just got involved with is Team Gleason. That is a foundation that Steve Gleason (former Saints football player and fellow PAL) has put together along with his wife to help other PALS with tools that use technology to help with quality of life. One of those tools is Voice Banking. Bill has started that process however it is difficult at this point. But he will continue to pursue it.

Along with that, there are many other things keeping him busy. Several doctor appointments at either Mayo, VA, or Functional Medicine and ongoing testing. Even with this busy schedule, Bill still does his stretching and strength exercises, spends time meditating (still learning that one), prayer of course, and was walking frequently but because of stability issues, has switched to stationary biking.

WANT TO KNOW MORE?

Hey, if you are interested, there are many books that we have listened to on audible that are amazing. We have learned so much and continue to learn something new every day. One of our favorites is written by an author we have grown to love, Joe Dispenza. The title is You Are the Placebo. He has also written other great titles like Breaking the Habit of Being Yourself and Evolve Your Brain. Radical Remission by Kelly Turner is mainly about a cancer diagnosis but many of the principals for healing are the same. One more I’ll mention is Quantum Healing by Deepak Chopra. All very interesting. This is only a highlight of what we’ve read but we would recommend them for sure.

FINAL NOTE –

There are many silver linings that come out of a diagnosis like this and we will speak to those as we move along this journey. Sometimes we come across obstacles that seem impossible but God gives us strength and wisdom if we ask. Thank you for your thoughts and prayers and we will keep you posted! Sign up for automatic updates if you’d like to know when something new is posted.