Not all things are black and white.
Not long after I was diagnosed, I spent a lot of time trying to figure out where this disease began in me. When you start doing research, you quickly learn that there are a lot of theories: it can be inherited, associated with Lyme disease, there could be a link to concussions, and other toxins may have triggered it. My doctors didn’t seem overly interested in the fact that I had lost two employees from our ranch to ALS, that I may have lost my grandfather to ALS, or that I had a long history of concussions. Thus began my attempts to find outside-the-box treatments for all the suspected possible causes.
Below are therapies and treatments I’ve tried and continue to use. IN NO WAY AM I SAYING ANY OF THESE TREATMENTS CURED ME OR EVEN HELPED MY CONDITION. ALSO, I AM NOT A DOCTOR SO THIS IS NOT MEDICAL ADVICE. What I am simply trying to do is show that there are other ideas out there, and that something seems to be working for me given how slowly this disease is progressing in my body. At this point, what do I (or you) have to lose?
MAGNET FIELD THERAPY
Early on, I had a strong suspicion that Lyme disease may have triggered my ALS. I grew up in the country, in the woods and fields of Oklahoma and Kansas. As an adult, I owned a horse boarding facility with 57 horses, and I was continually removing ticks from all parts of my body. Though I was never diagnosed or treated for Lyme, I thought there was a strong chance that I had it in me. Lyme tests and conventional treatments have less than a strong track record so I sought my first outside-the-box treatment and found the Erlandson Clinic in Onalaska, Wisconsin. I’ll let you do your own research and make your own determinations about what may be best for you.
ACUPUNCTURE
One treatment I’ve used for many years and for various pains and conditions is acupuncture. Immediately after I learned of my diagnosis, I relayed what was going on to my acupuncturist and she came up with a new game plan to calm my nervous system. Again, I can’t tell you my weekly visits make a difference, but I can’t say they don’t either. For that reason, this is another part of my routine that I will not give up. Here is a link to an article from the National Library of Medicine about acupuncture and ALS.
CRYOTHERAPY
A friend of mine from church told me about cryotherapy after she had learned of my condition. Whole body cryotherapy is often used by athletes to reduce inflammation. There is not a lot of study out there, but, again, what do I have to lose? Here is a link to a forum by the ALS Therapy Development Institute (ALS/TDI) about cryotherapy. They may ask you to sign up for free. I highly recommend it, because, in my opinion, this company is at the forefront of ALS research. I refer to them often.
IONIC FOOT BATH
One recommendation I got from my visit to the Erlandson Clinic was the purchase of an ionic detoxification foot bath system. It claims to help clear toxins from the body so, yet again, I have been giving it a try. It is not cheap but as they say, “you can’t take it with you.” (NOTE: You can find them much cheaper on Amazon.)
OTHER THERAPIES
Dribbling? Back in the day, I used to be a pretty good ball handler. Over the last several years, while coaching basketball, I’d been noticing my left hand was losing coordination. After many months in normal PT and OT, I thought to incorporate dribbling exercises into my routine and have found that I’ve been able to regain a significant amount of that coordination.
Other types of outside-the-box therapies that I use include: weekly infrared sauna treatments, the Harmonic Egg®, and frequent whole body massages. I’m also interested in the use of a hyperbaric oxygen chamber, but I have yet to give this a try. I believe all of these are worth looking into but will leave you to do your own research.
Something I’ve never done before, but am finding very helpful, is napping. Prior to being diagnoses with ALS, I was a work-till-you-drop kind of person. Recently I’ve been working a one-hour nap into my schedule and it’s made a world of difference in my energy levels. Give it a try.
MY TWO GO-TO THERAPIES
Not long ago, I let the staff at my school know of my condition. Since then, they often inquire how I’m doing and my standard answer has become a running joke. I’ve told them that any time I’m feeling the effects of ALS, like cramping or muscle fatigue, I use the same treatment….prayer and coconut oil. While it may sound like a joke, it is exactly what I do – every day, multiple times a day. A quick prayer and massage with coconut oil works every time.
If you’re new to ALS and are just beginning your research, you’re likely learning there is a huge volume of information out there, often contradicting each other. I recommend continuing to learn and trying new things, but only those that make sense to you. The therapies listed above are what I use because they are part of the “something” that is working for me.
Matthew 19:26
