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Wednesday, October 29, 2014

Talk About Medicines Month - a patient's testimonial and alternative therapy

Talk About Medicines Month

New blog post from Jon Chandonnet below!


Oct 28, 2014 10:29 pm
Talk About Medicines Month
October is talk about medicines month, and I wrote this post for the American Recall Center, a site devoted to providing up-to-date medical drug and device recall news in simple, straightforward terms.

Diagnosis

When diagnosed with multiple sclerosis (MS), seventeen years ago, my doctors immediately wanted to put me on the new blockbuster MS therapy, Betaseron. It was the first FDA approved medication to treat relapsing remitting MS, the strain of the disease I was thought to have. The drug showed efficacy at slowing progression in clinical trials and held promise for those living with the disease; I resisted.

Denial

Part of me hadn’t fully internalized the diagnosis. I was a young guy and didn’t appreciate my mortality. I wanted to experience what it meant to live with the disease and see how it affected me before taking any drug. I really wanted to see if the force of my individual will could keep symptoms at bay. Naive, probably, but that’s the where I was.
I successfully lived in denial for the next six years. Threat of the disease caused me to push life’s accelerate button. I lived an adrenaline infused existence, looking over my shoulder, in an attempt to outrun the disease. I ran marathons, climbed 14,000 foot California peaks, and worked sixty, sometimes eighty-hour weeks, to prove I was okay. At thirty-three, I believed I had found the answer to living a great life in spite of the diagnosis, denial. I showed no outward symptoms and believed I had cracked the code to living with chronic illness.

Decline

That reality crashed down around me over the next two years. Symptoms began to show. I tripped at a marathon water stop, and things progressed from there. I fell down stairs and began to shuffle my feet like an elderly man. I lost felling below my elbows and knees, my mind went in circles. I failed an online test at work I had been around long enough to teach. My speech was faint and strained. Words had trouble making it off my tongue and out my mouth.

In an attempt to arrest the decline, I cycled through each of the newly approved MS therapies; first Rebif, then Avonex, and finally Copaxone. None of them slowed the progression. I bottomed out and began to search for alternative therapies. I came across a number of people who improved their symptoms through diet, lifestyle change, and a diligent focus on well-being. I decided to try it. There was nothing to lose. I asked for four months off work and went to the Optimum Health Institute (OHI) to focus on my health.

Discovery

Over that four-month period my health improved. My gait evened out, my mind cleared, feeling returned to my extremities, and my speech became more fluid. I attribute the shift to a mindfulness of everything moving through my body (food, water, thought and emotion). I realized that inputs, combined with thought and habit, were the key to maintaining my health. There was no magic bullet, just a simple understanding that all I am is what moves through my body in combination with thought and habit. I also attribute the shift to finally taking responsibility for my health. It wasn’t the doctor’s job or that of any drug to keep me healthy. Responsibility started with me.
Today, nine years after returning from OHI, I remain mindfully focused on the things entering my body. I take Copaxone, one of the half-dozen FDA approved therapies and am on the constant lookout for things to add to my routine to live the best life I can in spite of the hand dealt. You can read my story here.
If this philosophy resonates, what is the most difficult aspect of practicing mindfulness?

Jon Chandonnet
View it in your browser





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