ALS: A Tough Road


In the spring of 1996, my sister phoned my office and asked me if I was sitting down.  Right then and there I knew it was going to be bad.  Really bad.

Mom had started developing symptoms in the late fall of 1995.  She was put through a battery of tests, saw a neurologist, and all the while she was undergoing diagnostic testing, I was thinking:  she probably had a stroke or has a small brain tumor.  I thought, surely she has something that we would have tools in conventional medicine and alternative medicine to use in order to deal with whatever problem she had.

Nope.  Such was not the case.

I was sitting down in my chair and it so happened that a patient had cancelled during that time, so I was able to speak with my sister.

"Kathy, mom has ALS.  Progressive bulbar palsy".

I have been shocked only a handful of times in my life.  My mom's diagnosis still holds the #1 spot for shocking experiences.  In looking back, I see that it was a diagnosis that I did not want to see.  Sometimes shock happens when the bubble of extreme denial is met with the force of truth.  I couldn't function for an hour after that.  Thank goodness for patient cancellations.

ALS (amyotrophic lateral sclerosis) is a terminal progressive and paralyzing disease of the spinal cord, whereby a person gradually loses every bodily function including breathing.  The only functions retained are eye movement and cognition.  This disease is like a relentless army, marching on with a clear mission and stopping for no one, destroying all of the nervous input to the muscles in its path.

Progressive bulbar palsy (PBP) is the worst subset of the disease, since it starts in the brainstem and progresses to areas in the spinal cord.  The prognosis for this type is usually much poorer than for ALS.  Mom's neurologist said that she would have about a year and a half to live before she succumbed to the illness.

No one knows what causes this disease.  There are theories.  I certainly have my own with regards to mom.  I believe a disease like this is multifactorial (many causes) and one factor for mom, was that year after year she dusted her beautiful garden roses with a pesticide that was a potent neurotoxin for bugs.  I remember seeing her down on her hands and knees putting this stuff on her plants, her face close to the rose bushes, and probably inhaling the toxic stuff.  The proximity of the nasal passages and the brainstem makes me pause to wonder and question.  She wore no gloves and no mask while she tended these lovely plants.  I wish I had known more at that time about toxicity and its potential harmful consequences, but such is life, and she is now long gone.  But who knows?  They are only my guesses.  Perhaps correct, or perhaps way off the mark.

Life is weird.  Tragic situations at times seem to be the fertilizer for both the most comic situations and the most heartbreaking realities.  I remember dying laughing with mom and dad during situations that only a disease like ALS could be the stimulus for.  I also remember deeply crying in private, for the progressive losses mom continued to experience:  loss of speech, loss of eating, loss of movement.

At that time I knew there were no viable treatments for ALS.  There is still nothing 16 years later.  Back then, Ritulek was a drug that could possibly extend life for up to a few months.  I see that it's still kicking around, not doing too much except providing false hope for desperate people.  Mom did not opt for Ritulek because she reasoned, that if it would only prolong her life a few months, it would be prolonging the suffering and loss she was already experiencing.  No thanks, she reasoned.

For me, the search to help my mom had begun back in 1996.

I was searching for answers - any answers.  At that time, I had only found 2 cases of people who were cured of ALS, and as with any cure of a disease that contains within it, a death sentence, "misdiagnosis" was the cry from the skeptics.  The jury is still out on whether these 2 people were actually misdiagnosed.

The first woman was in her 30s and had a mouthful of dental amalgam fillings removed.  After that, her severely debilitated state started to reverse until she regained her health completely.  A few patients with MS (multiple sclerosis) have also experienced dramatic improvements with their disease after amalgam removal, however, in general, there is no data that shows that this procedure is helpful for neurological diseases for the large majority of patients with ALS or MS.  There were skeptics that said this woman was misdiagnosed and that she never had ALS to begin with.  Maybe.  I don't know.  I didn't see her neurologic assessment and diagnostic testing reports.

Mom had a mouthful of dental fillings as most of her teeth were held together with silver metal.  I didn't even suggest the possibility of dental filling removal to her.  What an arduous, daunting, expensive task that would have been, and for what?  The remote and unlikely possibility of a cure?  No.  That would have compounded the cruelty that the disease had already set in motion.

The second ALS cure I found was experienced by a nurse named Evy McDonald, who eventually became a Methodist minister after her complete recovery.  Acceptance of self, life and her disease process appears to have been the stimulus for her complete recovery.  I recently googled her name to see what had become of her.  She is still living her life without ALS, 31 years after her first diagnosis.  Pretty impressive.  However, there are those that believe she had PPS (post polio syndrome), and that her diagnosis of ALS was a misdiagnosis since theses two diseases can present similarly.  Maybe.  Her neurologists were pretty certain of their diagnosis though.

Then there is another kind of impressive.  Steven Hawking has had this disease for 48 years, however, for the past many decades he has been almost completely paralyzed and uses a voice synthesizer to speak.  His limitations have not prevented him from authoring numerous books and researching his scientific theories.

It is rare for people with ALS to live beyond 5 - 10 years;  1 - 3 years for PBP.  If Evy's ALS diagnosis was correct, then she is the rarest of rare exceptions.

While miraculous, Evy's story is more than one of hope.  It's a story about life and what she chose to do with The Beast, as Tom French, a plastic surgeon, called his disease.  His story can be seen in the documentary movie Mind Games: A Love Story.  I watched the trailer and I cried for the full 4 minutes of its playing.  I understood the heartbreaking reality of the limitations that Tom and his family experienced, and I knew firsthand about the beauty and opportunities that this disease also makes room for, if we allow it.

In the book Tuesday's with Morrie, Mitch Albom writes down his conversations with Morrie Schwarz, a sociology professor dying of ALS.  While enduring The Beast, Morrie retains his humour, love, happiness, and expresses acceptance of his disease process.

A young girl named Haley Stevens developed this disease.  It is uncommon for a person this young to have this disease, but it does happen.  As a mother, to see your child have to endure The Beast, knowing what the outcome of that story will be while still living out that story - I can imagine few challenges that would be greater for any parent to experience.  Any loving parent in this situation would trade places with their child in a nanosecond if that were possible.

Like Evy McDonald, Tom French and Morrie Schwarz, the youngest victim of this disease, Haley Stevens, also continued living life with acceptance, and eventually graduated from high school before she died.

Let me come back to 1996 again, 8 months after the onset of my mom's symptoms.  I taught mom how to meditate and I also prescribed nutrient therapy to help support her immune system.  I knew that this would not retard the progress of the disease, much less stop it, but I hoped it would offer some comfort and a feeling of well-being while she deteriorated.  She did experience lots of energy from taking the nutrients and from meditating, but she couldn't utilize any of that energy to speak, swallow or move her left arm. She would write this disappointment down on paper when she could no longer speak and she still had upper limb movement.

I looked into learning how to administer intravenous chelation therapy and ozone therapy (major auto-hemotherapy) as a Hail Mary pass for my mom's plight.  I was pretty sure that neither would reverse Mom's disease process, but maybe it could slow it down?  Maybe better than the Ritulek?  These were the thoughts that floated in my head during that time.  Yes, I was desperate.  I had flown across the country 4 - 5 times for 2 - 3 week increments  over 1 1/2 years in order to administer chelation and ozone treatments to mom, with essentially no resultant improvement from the treatments (except for increased energy and minuscule disease progression).  She lived for 3 1/2 years from the onset of her symptoms, and I suppose that's 2 months better than what Ritulek would have provided.  Who knows?  There is no evidence (or even any case reports that I could find) where chelation therapy had affected the course of this disease one iota.  However, it gave mom hope at the time.  Not false hope, because I always told her that I didn't know if it would help her, but that we could try and see what happened.  She took comfort in the trying and took comfort in every treatment I had administered to her.  When I'm in a wishful-thinking kind of mood, I sometimes wonder if it was the chelation and ozone therapy that helped her retain her ability to walk and preserve movement of her one arm, right up until 3 weeks prior to her death.  Sometimes I wonder if it was the chelation/ozone therapy that enabled mom to walk a 3 hour hike with us up a beautiful steep mountain, 7 months before her death.  Then again, it just might have been the way PBP typically progresses.  I am not a neurologist to have witnessed thousands of people deteriorate from PBP, and even if it were unusual to retain that type of mobility close to demise, it doesn't prove anything.

Forgive my digression.

When I look at who the heroes in this world are, I see people like Evy, and Tom, his wife Jacqueline, Morrie, Haley, her mother, and my own mom and dad.  People who faced the insurmountable, and learned how to climb that mountain in new ways to teach us all how to embark on our own climb.

Four weeks before mom died, she flew from Ontario out to Seattle with my dad in order to visit my brother, where I too, met all three of them.  There, the four of us went to an NBA basketball game together and enjoyed each others company for one week.  My most memorable experience of that trip was when mom had her first jacuzzi experience ever.  My brother's bathroom was gorgeous, complete with a jacuzzi that could fit 3 people.  Because mom couldn't pull herself up or sit up straight without falling, I helped her into the jacuzzi and sat in the tub with her, holding her upright so that she would not fall and be submerged under the water.

We put some bubble bath in, and when the jets started spraying and the bubbles started forming, mom started to laugh.  She laughed and laughed.  She couldn't talk, she could barely move, and yet she could laugh.  Laughter is a contagious thing.  I started laughing, and when I think about that time even now, I feel tremendous gratitude for that experience of seeing my mom with such delight and such joy in an otherwise bleak situation.

PALS (people with ALS) are tough people;  tough, as in exceedingly strong and resilient.  Their caregivers match every ounce per ounce of that toughness found in those PALS.

My dad was such a man.

To say that mom was stubborn, would be an understatement (and I am well aware that I come by this trait honestly).  Dad cared for mom for the entire 3 1/2 years of her illness.  By himself.  No nurses.  No extra caregivers.  My sister lent a hand whenever she could, but that was not always possible for a stay-at-home mom (at that time) with 6 young children.  Dad was meticulous about blending mom's foods and nutrients, then measuring her gastrostomy tube feedings and administering them to her when she could no longer eat.  He helped her walk, and write, and taught her how to write in English since she only knew how to write in Greek, the latter being her first language.  He helped her learn how to use the talking keyboard when she could no longer speak or write.  At times mom became frustrated at not being able to be understood, whether she was trying to express herself through charades, writing, the talking keyboard, or just with quiet groans.  It was dad who had the patience of Job, who continually and lovingly was always there for her, trying to understand what it was that she was trying to express.

And in the last 3 weeks of her life, when mom wanted no nurses in the home to help out, it was dad who respected her choices and it was he who lifted her out of bed and put her on the commode for her bathroom needs.  He was 73 at that time, and he was lifting her full weight with no assistance since she could no longer lift herself.  He gave her 24 hour care, essentially by himself.  Dad was their rock through their collective storm.

It takes a great deal of love, perseverance and toughness to do what my dad did.

ALS is a tough road, and the people in these stories of immense challenge are also very, very tough.

ETA 21/3/12:  To help those with ALS, please sign this petition.