Healing MS: A Story of Hope for a Primary Progressive MS Diagnosis

A primary progressive MS diagnosis can often feel like a hopeless journey towards lifelong debilitating symptoms. But is that true? Maybe not. Here is Don’s story about his journey towards healing MS and drastically improving his MS symptoms.

This is Part 2 of our Managing MS series. The other posts in this series include:

Part 1 – Managing Multiple Sclerosis: 9 Symptoms that Led to a MS Diagnosis

Disclaimer: I am not a doctor or medical professional. This site is for informational purposes only and does not provide medical advice.

---

December 15^th, 1791. Yea, you read that date right. We’re going WAY back!

All the way back to the day the Bill of Rights became part of the Constitution of the United States of America. Because! It’s important to know a bit of history, especially when it plays so well into the theme of this story I’m going to share with you about Don (he’s the one with primary progressive MS).

As for the The Bill of Rights: it’s the list of rights, for the people, in relation to the US government, which protect from government overreach. More importantly for this post, it is a series of amendments to the Constitution.

Amendment: The act of changing for the better.

Constitution ratifiers believed a list of citizen rights was needed. It wasn’t included in the original, signed Constitution though. Thus, they amended the Constitution. They made it better, and they started with 10!

Now, onto how this pertains to Don.

You remember Don (if not, make sure you read the first post I wrote about what symptoms led to his diagnosis). Because I took so long to write this update, he has gracefully matured to the age of 51, as of the date of this post.

And boy does he look good! Healthier, yes? More youthful, perhaps? Dare I say, better than ever?

Can a person really improve a condition like primary progressive MS, though? Some say it is the most severe and crippling of the forms of multiple sclerosis.

Well, according to Don’s specialist: he has no new lesions, nor growth of his existing lesions, and his coordination metrics are in the normal range. And that doesn’t mean normal for those with MS, that means normal for ANY AVERAGE HEALTHY PERSON. Don is… normal.

But why isn’t his MS pushing him closer to a wheel chair? How can he be physically stronger than he EVER has been? And, be free of nearly every symptom he ever had?

Let us explore the amendments Don has made to his life (which is where we left off in the last post about him). One might say, let’s explore Don’s MS Bill of Rights. (There it is, I brought it full circle for ya 😉).

Healing MS: The 10 Amendments to Don’s Life (So He Can Thrive with MS)

Are as follows:

1. Pharmaceuticals
2. Diet
3. Supplements
4. Exercise
5. Mindset
6. Incremental Changes
7. Reduced Stress
8. Self-Advocacy
9. Creating an open mind
10. Health Coaching

Before we detail-out the amendments, I want to preface: these aren’t in a particular order, nor were all of them super impactful, but Don kept an open mind, and always moved forward.

Enough with the chit chat. Let’s do this thing!

Amendment 1: Pharmaceutical Change

Like most of us diagnosed with an autoimmune disease (depending on your diagnosis), Don’s first amendment to his life was the usage of a pharmaceutical. He began with Copaxone®, but didn’t see any improvement. His symptoms continued to worsen.

Fortunately for him, the FDA approved Ocrevus in March of 2017. Ocrevus®  is the only MS drug on the market that is specific to primary progressive MS (at the time of writing this article). Once he and his doctor agreed on the use, he began receiving Ocrevus infusions beginning February of 2019.

Since this time, Don’s disease progression has entirely halted. If I were a rep for Roche/Genentech, the creators of Ocrevus, I would end this post here.

But… I’m not.

Pharmaceuticals can absolutely have a place in the healing process, but they do not necessarily heal the body. They can buy it time, however. In the case of Ocrevus, the drug shuts down CD-20 B-cell production, which is thought to be the primary cause of primary progressive MS disease status and progression. Shutting down B-cells doesn’t mean you’ve healed the body though.

To heal the body, you have to give it what it’s missing and help it re-balance/modulate. This is true of any autoimmune disease. A helpful way to understand autoimmune disease is to reframe it as an immune imbalance.

So, how do we balance the body? Give it what it needs, and take away the things it doesn’t.

From the functional medicine perspective, you have to find the root cause, but this can be difficult (but not impossible) without the help of a great functional medicine practitioner.

Related: How to Find a GOOD Functional Medicine Doctor or Practitioner

In the meantime (as you are searching for your functional doc), you can implement an autoimmune disease healing lifestyle, go back to the basics, and boost your body with the things that many of us autoimmune-ers (is that what we call ourselves?) have learned and make the changes to actually heal our bodies. If you are liking the way this sounds, and want to get started on your own journey towards real autoimmune healing, then click the button below to grab our Free Autoimmune Starter Pack!

Send the Autoimmune Starter Pack!

This philosophy of autoimmune healing isn’t unique to me. I added it because it pertains to Don and his perspective as well for healing MS. Just check out the rest of his amendments to see what I mean!

Amendment 2: Diet

Oh yea! I said the D-word. And it’s not “Don” (obviously – its in the heading, such a lame joke).

Don believes that diet, paired with the next two amendments, BY FAR, have made the largest impact to his overall health. Not just for his MS symptoms, but his general health.

In the case of diet though, we’ll quickly recap his progression:

Childhood: beautiful, mom-made, home-cooked meals 6-7 days per week for breakfast, lunch, and dinner.

Amazing!

Early adulthood (17 years old) to Amendment time (approximately 48 years old): 2 liters of Mountain Dew per day, 1 can of Skoal chewing tobacco per day (the combo infamously known as “Chew and Dew”), 1 pizza per day OR McDonald’s once to twice per day (not talking salads here). Oh, and no water.

Yea! That’s about it other than some minor junk food alternatives. Cringey…

Don’s Current Diet for Primary Progressive MS

• 3-4 Eggs, 4 strips of bacon and a slice of whole grain gluten free bread every day for breakfast.
• Lunch is a glass of organic V8 juice and 16-32 ounces of Don’s “special shake” (recipe below).
• Mid-afternoon protein shake
• Dinner alternates between beef/chicken/fish with organic potatoes and a collagen shake. Some days include a large organic salad. Beef is grass fed/finished, usually organic, free range, chicken, and wild caught fish.

“The Shake”

• 3 Cups of Spinach
• 2 Medium Carrots
• Celery
• Cauliflower
• Red onion
• Garlic
• 1 cup of organic berry blend (raspberries, blueberries, strawberries)
• Half avocado
• 1 Scoop of Fermented beet powder (Dr. Mercola brand)
• Cal/Mag/Citrate powder (supplement from Thorne Research)
• 2 Cups Almond milk/water

“The Shake” totals out to 48 ounces. Other variations have included sardines (not kidding), fermented pickles, and protein powders.

Don has stated in the past that if he could take a single pill and it provided all his sustenance, he would do that instead of eating. “The Shake” is the closest thing to getting the missing foods (mainly veggies) into one place that he can quickly and easily take down.

This is the evolution. Don didn’t start here, but he has evolved his diet overtime to suit his tastes, remove foods that he understood were causing issues for him (gluten and dairy), and continues to tweak. It’s an invaluable lesson to listen to your body (symptoms and sensations are it’s language), and continue to adapt your foods to suit your body and your objectives.

Amendment 3: Supplements

This is another amendment in which Don believes is making a significant difference in healing MS, along with the next one.

A quick note: Don aims to use reputable supplement brands, not the cheap or bulk stuff that can be tempting to buy in order to save a little coin. Supplements are not governed, but top companies will audit their product to ensure quality. Quality over quantity (and cost).

Don’s Primary Progressive MS Supplement Regimen

Morning:

• Thorne Research B-complex
• Mercola Liposomal Vit C – 1000 mg
• Thorne Research Vit D/K2 – 5000 IU
• Garden of Life Men’s 50 and wiser probiotic
• NOW CoQ10 100mg, sometimes pairs with NOW PQQ Energy (Contains PQQ, CoQ10, acetyl-L-carnitine, and B-12)
• Pure Encapsulations Lithium Orotate 5mg (Pure encapsulations) – Monday/Wednesday/Friday
• Garden of Life sport protein powder (2 scoops) after gym days (4x per week)

Lunch:

• Garden of Life Mood probiotic (50 Billion)
• NOW Fish Oil 1 capsule
• Pure Encapsulations N-Acetyl-Cysteine 1 cap (Sat, Tues, Thurs, Sun)

Night:

• Pure Encapsulations Zinc Picolinate – 15 mg
• Pure Encapsulations Magnesium Glycinate – 120 mg
• Seeking Health Liver Nutrients – 3 to 4 days per week
• Nightly supplement shake (one scoop each) – Bone broth protein (Ancient Nutrition), turmeric powder (Frontier Co-op), collagen (Vital Proteins)

Don never took ANY supplements prior to beginning his autoimmune lifestyle. This was a significant amendment. So much so, that he literally had to teach himself how to take capsules.

No problem now, but early on he used to put the capsules and water in his mouth and right before he swallowed, he STOMPED HIS FOOT… to distract himself and get the pills down.

Picture it. You can laugh. We have his permission.  

Maybe you noticed how many supplements this regimen involves. More isn’t always better or necessary, but it is working for him. Plus, he is in process of doing some testing to see what can be optimized (add/change/remove). Don had help getting started, but clearly took control of this area and modified his regimen to fit what makes him feel best.

Amendment 4: Exercise for MS

The final leg to Don’s 3-legged stool of healing MS success – Exercise!

*Diet, supplements, and exercise… In case the 3-legged stool reference didn’t land.

Prior to making this amendment for his primary progressive MS, Don worked out for a total of 18 months IN HIS ENTIRE LIFE (2-3 days per week). Once again, Don pulled from numerous resources until he landed on the advice of a close friend that has been into lifting weights for a long time. Don’s friend swore up and down that the BEST thing he could do, was literally everything that “The Barbell Prescription” told him. “Follow it verbatim and you’ll be all set”, was the advice of his friend.

So he did.

Don virtually got stronger, instantly. His coordination improved, and he also formed a consistent habit of exercising regularly. At first, he stuck to the protocol given to him in “The Barbell Prescription”. But later, he began adapting his workout routine to include high intensity interval training (HIIT) and other functional movement exercises to round out his exercise practice.

And I’ll make the point again. Don took ownership of his health. He didn’t just do what his friend or “The Barbell Prescription” said to do. He learned through practice and educating himself what he should do and adapted his overall routine from there.

Don’s Primary Progressive MS Exercise Routine

Monday (Legs) – all 3 sets of 5 reps

• Squats
• Leg Extensions
• Leg Curls
• Calf Raises
• Hip Abduction

Tuesday (HIIT and Abs)

• Spinbike – 4 minute warmup, 8 minutes of alternating 20 second max effort/40 seconds light effort, 4 minute cool down. 16 minutes total
• Crunch machine – 3 sets of 10 reps
• Oblique machine – 3 sets of 10 reps

Wednesday (Chest and Arms)

• Flat bench press – 3 sets of 5 reps
• Incline bench press – 3 sets of 5 reps
• Decline bench press – 3 sets of 5 reps
• Butterfly machine – 3 sets of 5 reps
• Curl machine – 3 sets of 10 reps
• Dip machine – 3 sets of 10 reps

Thursday (HIIT and Abs)

• Spinbike – 4 minute warmup, 8 minutes of alternating 20 second max effort/40 seconds light effort, 4 minute cool down. 16 minutes total
• Crunch machine – 3 sets of 10 reps
• Oblique machine – 3 sets of 10 reps

Friday (Back and Shoulders)

• Overhead pulldown – 3 sets of 5 reps
• Seated row – 3 sets of 5 reps
• Deadlift – 3 sets of 5 reps
• Overhead press – 3 sets of 10 reps
• Reverse butterfly – 3 sets of 10 reps
• Dumbbell forward arm raise – 3 sets of 10 reps
• Dumbbell side raise 3 sets of 10 reps

Saturday (Rest)

Sunday (HIIT and Abs)

• Spinbike – 4 minute warmup, 8 minutes of alternating 20 second max effort/40 seconds light effort, 4 minute cool down. 16 minutes total
• Crunch machine – 3 sets of 10 reps
• Oblique machine – 3 sets of 10 reps

Amendment 5: Mindset (a.k.a. your WHY)

“Oh, here we go with the fluffy stuff.”

Don’t you dare think that! While mindset might not be the big ticket item that makes a noticeable difference, it IS the thing that will make the difference in the long-term.

How did Don make all these changes? And how is he still going strong today? Most importantly… how is he happier, healthier, and more vibrant now than before?

You would think, all this focus on health, the restrictions to his diet, and everything else would be seen as a tax. Work. Rules and regulations!

But with mindset, all these things fall into place. Originally, Don didn’t want to make any changes. He said the exact same things I mentioned in the paragraph above. Then one day at work he saw a co-worker that he had never met before, get out of a car.

And when I say get out of a car, he basically had to fight his way out. The co-worker was a fellow MS autoimmune-er whose disease-state was much farther along. After he got out of the vehicle and forearm crutched his way over to where Don was, they officially met. The guy seemed happy! He was one of the kindest people Don’s ever come to know.

The story goes, the man was diagnosed with primary progressive MS, was living his life somewhat normally (Standard American Diet and a pharmaceutical), and one day he woke up and could no longer walk. Just like that.

And as happy-go-lucky as the co-worker was, Don did not want that to happen to him. He didn’t want his primary progressive MS to be in control and one day drive his health off a cliff. His mindset shifted into take-action mode for healing MS.

So that’s what helped Don put his healing in motion and begin the amendment process, but his mindset has changed overtime, and is even more beautiful now. In his words…

“People say: ‘awe you have MS that sucks’, and I say ‘NO!’, it has been the biggest blessing. I have more energy, feel great, and all because of the refocus on my life and health. I’m in WAY better shape than I would have ever been, and my mind is even clearer than before.”

-Don

I think his quote embodies why mindset matters so much. You think Don’s upset by his diagnosis, and wishes he could go back to his previous lifestyle? Nope. His diagnosis and quest for healing MS gave him the opportunity to amend his life and give it even greater purpose.

Amendment 6: Incremental Changes

Once you go down the rabbit hole, it’s hard to turn around. In regards to health, your view on life profoundly changes. The easiest place to see this is with incremental changes.

Related: Can One Tiny Change Reverse Your Autoimmune Disease?

Prior to his 6^th amendment, Don went through life like many (maybe most) Americans, and certainly like Anna and myself. We didn’t think about what small little effects our environment, including everyday things we use, have on our body. But these small effects compound, they add up, until they actually have an impact.

Overtime, Don read up on these small effectors and eventually made the following changes:

• Switched to glassware instead of plastic for food cooking and storage
• Acupuncture – felt really good immediately after appointments, but didn’t acutely improve MS symptoms. Noticeably improved his mood, relaxation, and sleep (overtime could have had a greater effect).
• Chiropractic – Shoulder pain improved (not MS related), no real improvement in regards to MS symptoms. During writing this article, he is still going until he feels he has maximized the benefits of chiropractic care.
• CBD (Endoca brand) – This is sort of a supplement, but he isn’t routine with using it. Primary use is at night when he gets leg twitches (would kick the sheets off), he takes 1 pill of high strength CBD and within 20 minutes the twitching stops and he falls asleep seamlessly.
• Personal Care Products/Routine – no longer uses deodorant, only showers every 5 days (on average) big reduction in processing soaps and shampoos.
• Wears gloves when handling oil and gas, wears a respirator when spray painting (didn’t take these precautions prior).
• Only drinks water from his Berkey, and uses a Berkey shower head – purifies his drinking water, helps reduce chlorine absorption and inhalation in the shower, and much more. And there is always the added benefit of not having to clean his shower very often!
• Blue blockers – improves his sleep when he has consistent trouble.
• Outside and in the sun as much as possible with no sunscreen.

And now I’ll turn that broken record back on: Don did his own research, and made these decisions to see what the benefits might be, or are. Self-advocacy at its finest.

Amendment 7: Reduce Stress

If you ask Don what the most difficult changes were, it is likely his diet, some of his incremental changes, and his workout routine. Undoubtedly though, the most life altering amendment Don has made was reducing his stress.

In order to reduce his stress, Don made two monumental changes. Reducing stress is particularly important, too. For one, Don builds up stress frequently, as he is a very passionate and compassionate person. He cares deeply about people, and the actions (work) he does. His level of care leads him to carry this extra stress-baggage.

Second, for anyone, stress activates the sympathetic nervous system, and for someone with an autoimmune disease, this means that the body never gets a chance to shutdown the immune response. This can lead to additional disease manifestations, worsening of symptoms, and more.

So, what did Don do to shed his stress?

He got divorced.

And… quit his job.

After these two things, his stress literally melted away. Please understand, the divorce side is obviously personal, so we won’t discuss it any further.

As for quitting his job, Don now has to live off savings, which for some might be more stressful. But in Don’s case, he is a good planner and tight as a pair of spandex pants when it comes to managing his money. So, he no longer has the burden of work deadlines and constant responsibility looming over his head.

No stress, less sympathetic nervous system activation, more time for parasympathetic nervous engagement, thus more time for healing MS. That’s some powerful decision making and amending.

Amendment 8: Self-advocacy

I’ve mentioned self-advocacy several times because it seeps into other amendments. It is, in my opinion, a foundational amendment that anyone should make (especially autoimmune-ers), and Don has made and exercised this amendment to his avail.

Since there are more specific examples of Don’s self-advocacy in Amendments 2, 3, 4, and 6, I won’t recite another story (this post is already a daunting read).

In short…

Self-advocacy means that you care about your health. Nobody is saying you need to become a doctor, but you should at least make your health a priority. Do some reading and light research every once in a while.

Blindly handing your health over to ANYONE, even a doctor, is negligent. “Trust but verify” is a good way to sum up a self-advocate’s approach to working with a doctor.

This is how you build the skill it takes to navigate autoimmune disease, or even maintaining health (if you’re not already in the autoimmune-club). Don has made his health and his self-advocacy a building block amendment in his life.

Since this is such an important topic, Anna wrote a post on how to build a stronger will and understanding of self-advocacy in her post: How to Become the BEST Self-Advocate for Your Autoimmune Disease.

Amendment 9: Creating an open mind

We all have preconceived notions about health and healthcare. This partly exists because you only hear what is mainstream, but sadly, alternatives that work are seen as less effective, or somehow worse (even dangerous) in comparison to mainstream medical intervention.

In order to overcome this issue, it is critical to have an open mind. In Amendment 6, I mentioned a number of incremental changes that Don has made. Some of which, have been extremely beneficial to Don’s overall health and his MS.

But Don would have NEVER tried CBD or acupuncture if he hadn’t had successes with his diet and supplement regimen. Sometimes, developing an open mind, in order to find the best information/health remedies requires concessions to see the value first hand.

Related: The 3 (Completely Free) Things You Need to Beat Autoimmune Disease

Once Don took the leap and tried something non-mainstream (like diet), he opened the door to all sorts of opportunities, and then used his self-advocacy to determine the right path for him.

Amendment 10: Functional Health coaching

Yes, I have no shame. This is a bit of a plug for myself, as I have been Don’s health coach for several years now (mostly unofficial as I only recently became ADAPT certified). But Don’s second Amendment (diet) started with accepting my invitation to be “coached.”

Although I wouldn’t call it that at first – I really had no tact.

The best part about health coaching is, while the coach is obviously a part of the team, the client, Don in this case, does ALL the work. He makes the decisions, comes up with the game plan, executes, does it ALL!

Don leveraged his coaching initially to learn about and begin implementing things like diet, exercise, sleep hygiene, and supplements. But once he had those on track, Don chose to focus much more intently on things like his faith in God, his relationship with stress, and how to project out his life through a less task-oriented lens.

Honestly, the result has been inspirational. For instance, Don has removed a nearly lifelong burden of dealing with unforeseen tasks, all of which became the cause of serious stress. He has fundamentally changed how he approaches life.

(If you are ready to make impactful habit changes to benefit your life, we can help! Check out our Free 5-day Habits eCourse where we teach a proven method to change and implement new, healthier habits for healing autoimmune disease. Click here to enroll!)

What’s Next for Don and His Primary Progressive MS?

Don’s story is an ideal example of what we are capable of. He started his MS journey from a place of little-to-no knowledge (or belief in what he would later do), little care for his health (and all that is tangential to that), and no direction.

While diagnosed with Primary Progressive Multiple Sclerosis, a disease that is supposed to get progressively worse without the slightest warning… Don has improved.

He is…

• More coordinated
• Back to climbing stairs, hiking, and enduring activity with rare hesitation
• Stronger
• Healthier (no more bathroom mishaps to boot)
• Happier

But Don isn’t done. His next step is to deep dive his overall bodily function. He wants to see what tweaks he can make to improve his outcomes even more, as well as eliminate anything that is not serving him (like unnecessary supplements).

Once he dials in his approach after the functional tests, he wants to make a decision on whether or not he will stop using Ocrevus.

I’m honored to capture Don’s progress and all that he has done to turn his life around. I hope you can glean some motivation from this inspirational man and his amendments for healing MS.

LIKE THIS POST? SHARE IT AND SAVE IT TO YOUR FAVORITE PINTEREST BOARD!