A disease may be incurable but this does not mean we give up. What it means for the hero warrior that we have inside us all, is it is time to fight back. But this does not mean blindly going at things like a bull at a gate. The Hero is not stupid; to the contrary, he or she is very smart indeed. Heros are wily survivors, not martyrs or Kamikazes. Heros are leaders; they explore unfamiliar territories and lead us to better things. The hero lives a life well-lived.
I am publishing here, the story of one such hero. Faced with a devastating diagnosis of Multiple Sclerosis, she did not give up; instead, she began her very own Hero's Journey. While it can never be said she is cured, the fact is she is now much better off than when she first began her quest. All of us can take lessons from her experience. The main lessons, I take are these:
Be forever optimistic and aim to be a diagnostic outlier. For example, Keith was given six months to live from a disease nobody survives for more than a year or so. That was longer than a decade ago (I've lost count of the exact number of years). He's still going strong despite the disease.
Use science to chart your course and be sure to retake your bearings at regular intervals so that you can adjust your route accordingly.
Identify the 1001 factors - the lot - the obvious through to the most insignificant, then have a plan to patiently chip away at each one like a thousand drops of water on a rock. Wear each factor away one grain at a time for as long as it takes to make each one truly insignificant.
Another way I like to look at things is to compare your patient, multifactoral health strategy with the investment of a substantial sum of money in the share market. First of all, the wise investor has a diverse portfolio, second, they take a long-term view of their investment: years - not months - and they seldom sell when the market has dropped. As sure as the sun rises in the morning, so will the long-term and multifactoral investment in your health.
Here is what she wrote:
(with permission)
In December 2018 my fingertips went numb. Pain in my hands increased over 10 weeks until it felt like they were constantly being crushed. Let’s skim over the early agonising weeks and all the testing to no avail. I was in despair at continually being told a referral to a neurologist was months away. That seemed simply impossible.
My GP and the A&E doctors were awesome - we talked over other options. We paid to see a neurologist privately, and for a raft of tests and an MRI - the cost hurt almost as much as my hands. MRIs showed a spinal cord lesion that had doubled in size in six weeks. In hindsight, getting fast information was invaluable and almost certainly avoided further nerve damage.
After a lifetime of good health, at 49 I was diagnosed with Multiple Sclerosis. No previous signs, no family history but there it was.
"It is what it is", that’s what I thought then and I always come back to it. I didn’t cry, I didn’t get overwhelmed nor dwell on worse case scenarios. My husband and I got serious. We were methodical, making lists of what needed to be addressed in the next month, in six months, in the first year. We researched, confining ourselves to formal medical studies, ignoring the endless clickbait. As well as pharmaceuticals, we read about the benefits of fasting, meditation, exercise, supplements, the cold, herbs and helminths.
I did anything that seemed worth a try. I never said anything was too tough because it wasn’t - nothing is harder than being really really sick. My days are a mix of self-care, clean eating, cold showers, colder swims, tooth flossing, bracing walks, meditation, yoga, rest and love. I am learning how to live as well as I possibly can, something that ‘perfect health’ never taught me.
We told our teenage kids all we knew at every stage no drama. I’m glad we did, it worked for us. Soon I told our close friends and family – all good, they are the best of people. About three months later, when I was medicated enough to get out and about again, I told my wider circles via a Facebook post. I shared all my symptoms, invisible to others, on the basis that full disclosure meant nobody had to tiptoe around me or ask after the details of my health, there’s way more interesting stuff to talk about. The first thing I asked in that post was to have a good swear for me – I got so many hilarious photos and messages from around the world, man I needed those.
So now, a couple of years on, I’m back in the public health system which is narrow but very efficient after a diagnosis. I am aggressively positive about the future. I live with some pain but it will go. My energy levels seem to have limits, but they will improve. I’m doing all I can for excellent health, maybe even better than ever.
Here is her latest update:
Hi Gary
I wanted to share something with you.
Today, I had a great day walking in the Able Tasman park, an 11 km round trip into Apple Tree Bay. I even swam. We did the same a couple of weeks ago, and I'm aiming for weekly from now. Also been walking closer to home, just around Motueka estuary 5km twice a week. Tomorrow we'll go from home with the dog around a 7km walk.
I've been focused the last six weeks on beginning to up my daily movement and as well as walking have been more actively coaching football and reffing more, either 'running the line' for the 90 minutes in men's first division and not quite but almost keeping up with the
very fast-fit lads, and reffing the ladies games where I can stay in the middle for 90 minutes. It's a process I am feeling my way into, mindful not to overwork and deplete my reserves but to nudge the envelope as it were.
So this is all great. Yesterday I gardened for three hours. My thighs burned today from the constant squatting, but I still got up at 8 am for the walk today. The more I can do, the more I can do. That's how it works, eh. And I feel so much better about it. My husband can see it too.
At first, it was so hard, two years ago when I was sleeping 16 hours a day, on lots of drugs and always so exhausted, in a lot of pain too, hard to get some energy going to move on from there, but slight changes build up to something - gotta keep believing! I've even come a very long way since last year when I could maybe do one thing like a 5km walk then sleep the rest of the afternoon away and half the next day too. And better than six months ago when I began not to need daytime naps.
So good to share the successes. And thank you for the part you've played, glad I found you xxx.
I'm booked in to catch you online on the 7th of next month and will check in before then.
Warmest wishes
Gary:
Multiple Sclerosis (MS) is inflammation of the Central Nervous System (CNS) that comes and goes, sometimes for years, causing progressive damage and, therefore, increasing disability and eventually, premature death. With each episode, more damage is done, more function is lost and while some may be regained, the damage accumulates with each episode.
"A disease in which the immune system eats away at the protective covering of nerves.
In MS, resulting nerve damage disrupts communication between the brain and the body. Multiple sclerosis causes many different symptoms, including vision loss, pain, fatigue and impaired coordination. The symptoms, severity and duration can vary from person to person. Some people may be symptom free for most of their lives, while others can have severe, chronic symptoms that never go away. Physiotherapy and medication that suppress the immune system can help with symptoms, and slow disease progression."
Source: Mayo Clinic
Hmm... so, according to the experts, there is not much one can do other than suppress symptoms and accept the inevitable.
While there is no cure there is a lot we can do to:
Reduce the severity of the inflammation.
Reduce the duration of the flare-up.
Protect the CNS as best we can from the damage of excess inflammation.
Support recovery following an episode.
Increase the time between episodes.
We began with hair tissue mineral analysis (HTMA).
The great thing about HTMA is we can identify inflammatory patterns, nutrient excesses and deficiencies, plus the presence of toxic elements. We know, for example, that copper deficiency is a factor in inflammatory autoimmune conditions such as rheumatoid arthritis. Elevated iron relative to copper is also associated with autoimmune conditions such as reactive arthritis. Copper is needed for myelination and it just so happens that MS involves demyelination.
You can see on her chart that her copper was unusually low on the first test:1.5 when it should be 2.5 or higher, and it has now dropped to 0.9, and this is despite supplementing with copper. This decline in copper is actually good news because it indicates that she has an unusually high need for copper and we can respond to this in positive ways to increase copper uptake and utilisation. This, among many things, is what she has been doing and the results are most encouraging.
Several take-home points:
A comprehensive, holistic, patient approach to even the most complex or apparently hopeless condition can reap surprising rewards.
Single remedies, including the most powerful drugs, on their own, seldom work for the long term.
Testing (HTMA) is essential for guidance, otherwise non-drugs lifestyle and nutrition therapies seldom work.
Many small, incremental changes add up to significant things over time.
A patient and tortoise-like approach will work better than the "hare-like" scampering and big-hit approach that dominates healthcare today.
With these kinds of diseases, there is never a cure, or assume one is cured. One must be forever diligent even if, for years, there are no signs or symptoms. Practice proactive health!
Be forever optimistic no matter how grim things may appear.
Recommended reading for being better:
To further guide and motivate you: