Always Live Strong

 ALS is a motor neuron disease. Motor neurons are the nerve cells that control voluntary muscle activity including speaking, walking, breathing, swallowing and general movement of the body.  In ALS, the motor neurons degenerate or die, ceasing to send messages to muscles. Unable to function, the muscles gradually weaken, and waste away. Eventually, the ability of the brain to start and control voluntary movement is lost. It is an incurable, catastrophic, rapidly progressing disease, leading to death in half of the people diagnosed within three years and ninety percent within six years. It is an indiscriminate serial killer. With no known root cause, it spares no demographic. You can’t exercise, diet, medicate, relocate, vaccinate, or nutritionally supplement yourself out of being at risk.

I have ALS.

While most of us would describe their existence as being comprised of multiple chapters, I now have two distinctly different lives. Prior to ALS, I had led an unremarkable life, largely characterized by good fortune. Some of my successes turned out better than they might have, and many of my mistakes not near as bad as they could have been. Work challenged me appropriately, and rewarded me fairly. My leisure time was filled with enough activity, in the form of travel, golf, and basketball that a fulfilling balance was maintained. My health (as evidenced by my weight, blood pressure, and critical blood analysis) predicted many robust years ahead.

The poem that follows summarizes my life after ALS. The poem speaks of a “journey”. As part of that, I became my own patient advocate. In so doing, I have researched a fair amount, experimented with protocols that offered efficacious possibility, and have received consultation from a few healthcare professionals offering treatment advice outside of established thinking in the U.S. I believe that this approach has added days to my life, and life to my days. If you are an ALS patient, or caregiver, I welcome the opportunity to compare notes, and exchange ideas.

The poem also speaks of a “victory day” resulting from “new ammunition”. This is where ALS TDI comes in. Conquering ALS, thus far, has been cruelly futile. Thankfully a unique organization like ALS TDI was established. They are a non-profit biotech, employing over 30 researchers, focused solely on treatment discovery, committed to mitigate, slow, and eventually halt this disease. While non-profit companies, by and large, are noble endeavors, ALS TDI is an elite, among elites. 87% of every dollar goes directly to research. They have earned a 4-star (exceptional ) rating from CharityNavigator two years in a row. 

I have had the opportunity to participate in some of their webinars. From their sense of urgency, their empathy, and their rigor, it is obvious that they “get” the task at hand. That their singular purpose is to solve the ALS riddle, without respect to profit, they are the epitome of collaboration, freely crossing industry, academic, and national boundaries in pursuit of that goal. Given that they are a world-class research engine that was built by the ALS community, I believe their role in the identification, and implementation, of a cure for ALS is vital. But, they need our help…..help in the form of greater awareness, and greater funding. Please, donate what you can, and share this with as many as you are able.

Thanks for joining the fight!

Rick Jobus        April 2012

Always   Live   Strong

The words were an assassin’s bullet, causing my mind to explode.

No more walking, no more talking, unable to carry my own load.

There are no more dull days when your previous breath may be your best.

And finding safe footing in the scaling of life becomes your constant quest.

My body, once my temple, is now a prison with ever shrinking walls.

But my mind, once finite, now let’s me roam an endless maze of halls.

Sleep, once an abstract master, became a colleague, my dearest reality.

A reminder of who I was, and optimum foreteller of who I am yet to be.

I cursed the world, screamed at God, drank a bit, and cried a lot.

Perhaps I have that backwards, my foggy memory serves me not.

I sought wisdom from the scholars, a course of action from my docs.

All answers were defeating, with no keys to open ALS’s many locks.

In time there came acceptance, a softening of my view on life.

Aware of my body’s death arc, but pledging no spiritual strife.

Then with crystal clarity, I realized that unconditional surrender just wasn’t right.

Vowing to savor the journey, not rue the destination, my journey became my fight.

The confounding nature of the ailment is that its source is an evil mystery.

Not a single warrior, but a cowardly band of causes daring to terrorize me.

The trick is how to thwart an adversary chosen only for one man.

Disarming a stealth combo of factors calls for a highly daunting plan.

But “hope is the thing with feathers” a famous poet once said.

So surround yourself in feathers, let them flourish and spread.

Be not content to be the sole contributor to your feathery array.

Adding hope, not pity, from others will yield a potent bouquet.

Put the event behind you, choose carefully your ensuing path.

Select healthy, productive ways to channel consuming wrath.

Know your enemy, what may weaken or slow its progress.

Time gained, and well spent, is a true measure of success.

Every day that you rise, be prepared to do battle; attack, do not hide.

For that may be your victory day, with new ammunition at your side.

No matter the size, savor every moment, celebrate every circumstance.

Believe with pure conviction that you always have a puncher’s chance.

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