"What you think about, you bring about."
- Mary Kay Ash

            To catch you up and not make you read all my posts:  Basically, I have both Multiple Sclerosis and Amyotrophic Lateral Sclerosis or ALS.

Since my diagnosis on July 28, 2011 here are the issues I am dealing with:
1.  Walking is very difficult.
2.  My arms are weak.
3.  I use a walker to move around.
4.  Falling is a reality (I have fallen 23 times).
5.  Breathing is difficult.
6.  My tongue muscle is atrophying making speech challenging.
7.  Simple tasks like dressing, undressing, and showering are not possible.
8.  Laura is my constant care taker and it is quite a job.
9.  I have lost 17 pounds (I don't recommend ALS as a weight loss plan!).
            This is one of the most dangerous issues with ALS patients
10.  Travelling is too challenging and I don't travel.

            POWER, the company I work for, recognized my situation and modified my job.  I don't have to travel and am allowed to work from home.

            My latest doctor visit resulted in the prediction that in six months I will be in a wheelchair, but the doctors have been wrong before!

            All that sounds bad, right?  

            Remember, I am an exception.  

            If anyone can beat this prognosis, it is me!

When everybody tells you that you are being idealistic or impractical, consider the possibility that everybody could be wrong about what is right for you."
- Plato   

            Through some miracle, I got to see the premium ALS specialist in the Northwest, Dr. Kimberly Goslin.  She met with me and did a new exam, an EMG.  Think needles poked in various parts of your body, then electric current is introduced to enhance the experience!  The idea - see how my neurons were transmitting impulses.  Patients with ALS have a weekened neuron system and a test of electrical response may provide data.

                July 28, 2011:  Laura and I are with Dr. Goslin.  She tells me, "Akhil, I am 95% positive you have ALS.  It is very rare but even more rare is someone who has MS and ALS.  But you are an exception."

                There it was again!  I am an exception

 "There are some things you learn best in calm, and some in storm"
- Seneca

              May 2011:  All systems were go.  MS in check.  Family doing well.  Oldest daughter, Ashley, gets accepted to start college at the University of Washington.  Middle daughter, seeing success as a Ridgefield, High School cheerleader.  The youngest, Jordan, being home schooled by Laura.  We have found a good church and life is good.

                Storm theory:  You are either leaving a storm, in a storm, or heading for a storm.

                Fasiculation - funny word.  It means the muscles twitch.  My left arm was twitching like crazy.  It kept me up at night.  It was like someone grabbing my arm and trying to get my attention.  Oh, must be some residual effects of my multiple sclerosis.

                I go see my MS neurologist at OHSU, Oregon Health Science University.  She was the most capable neurologist I have had the pleasure to work with.  Also, she was super cute!  All in all, I was eager to see her and resolve this annoying twitch.

                "The storm, she is coming ..."

                My neuro examined me and had a quizzical expression.  She did a series of tests and offered no relief.  One month passes, I am in her office and she says something that I will never forget, she said, "Akhil, MS doesn't present itself with fasiculations.  MS is a central nervous system issue.  You are experiencing a peripheral nervous system problem.  I suspect you have ALS!"

                Amyotrophic Lateral Sclerosis or Lou Gehrig's disease.  She told me to see a specialist that focuses on patients with ALS.

                "Good luck, Akhil.  I wish I had better news," were her last words.

"You are the way you are because that's the way you want to be. If you really wanted to be any different, you would be in the process of changing right now."
- Fred Smith
        
            June 2009:  I was in Dallas, minding my own business - literally (I worked for my Dad's company) and got a call from a recruiter.  He connected me to a company named POWER Engineers.  POWER was in search of a manager for their West coast operations.  "But I already have a great job, working for a great man - my dad," was my response to the recruiter.
   
            I told Laura about my call and we discussed it further and dropped the topic.  The next morning, Laura came back to me and encouraged me to at least interview.  Just see why God has put this in your life.  Change is a norm for us and we Jhaveri's are an adventerous lot.  I called POWER and four months later I was the new West coast department manager with POWER.  

               The job was in Vancouver, Washington not British Columbia.  Think Portland, Oregon, that's about where we ended up.  To make matters more interesting, we decided to build our home.  We found a lot with a fabulous view and designed our "Dream home."

                Multiple Sclerosis?  Who that?  I stayed on my Avonex, but was relatively symptom free.  India had done its magic and life would continue to keep getting better. 

                Right?

"The recipe of perpetual ignorance:  Be satisfied with your opinions and content with your knowledge." 
– Elbert Hubbard

            Six years pass, I stayed on the Avonex therapy plan and I had episodes every four to six months.  These episodes varied in duration and severity and were unpredictable.  I kept a log of my episodes and the only link I could establish was with stress.  If I had a particularly stressful week at work, it seemed to aggravate my symptoms; however, that was not always the case.  I tried to correlate my exacerbations with how much water I drank, food I ate, rest, and exercise but nothing seemed to point to the cause of the exacerbation.  My body seemed to be following the path as predicted by Dr. Heyman.  When I would have an episode, I would call him and he would tell me the same thing, “If you want, we can put you on steroids.”  He did advise me NOT to take steroids unless absolutely necessary. In other words, suck it up unless the symptoms are unbearable.  

                Through job changes, we came back to Dallas where I went to work for my dad.  Actually he is my step-father and I call him Sam.  He raised me from the time I was eight years old.  Even though his real name is George Samuel, I always called him Sam, for some reason that name just stuck.  If you are part of the inside circle with our family, you would call him Sam.  If you are an outsider, it’s George.  I know it may be confusing, but it seems to work for us. 

                Sam was born in South India in a place called Kerala.  His birth place becomes important later in the story. 

                March of 2007:  I have my most severe episode of MS to date.  My body refuses to cooperate. My body is numb from the waist down.  My feet won’t move up and down stairs, try as I may.  I am struggling to walk.  Each step is an adventure.  I realize that walking is a mental exercise.  Your legs and your body are participating in a synchronized dance.  Your movements have to be somewhat precise so you don’t fall down.  Think about it, you lean forward with your body and before you fall down, your leg jumps ahead to catch you.  I didn’t appreciate this activity until my legs didn’t play along with this dance.  I felt like I was going to fall down whenever I moved.  Actually this was pretty scary because I just couldn’t control my body!  The only good news was I didn’t need a wheel chair.  I could move around by myself and I could even drive.  Speed and coordination were my main issues.  Both my legs felt like they were wearing lead boots.  The heavy feeling was not going away so I went to see my neurologist.  Help!

                Even though I didn’t want steroids, I agreed to get started with intravenous steroid treatment.  Unfortunately, it was no help.  The doctor explained that it is normal for MS patients to have increased episodes after nine or ten years with MS.  In other words, my MS is taking its course as predicted. 

Sam said, “Go see a doctor in India.”  “What?” I exclaimed.  “Are you crazy?  What kind of stuff can a doctor in India do that a top neurologist in the United States of America can’t do?”  Third world country, backwards medicine, no facilities, voodoo doctors.  “Whatever!” I thought to myself, I’ll go …

Long story cut short … the voodoo doctors did their magic, and I was cured!

I mean, baby, I was back!

You can see more of this with videos a company did for me (Three parts)

         Multiple Sclerosis or MS is a very interesting disease.  I knew nothing about it and perhaps you don’t either.  It is an autoimmune disease that attacks the central nervous system.  I won’t bore you with the detailed explanation about the disease.  If you have it, find out every detail you can.  Let me give you the summarized version of what MS is and what it does to you.

            First of all, MS is a young person’s disease.  On average, onset of MS occurs at 33.2 yrs while the average age at diagnosis is 39.2 years.   There are about 500,000 cases of MS in the United States and over 6 million cases worldwide.  In individuals with MS, the immune system goes out of whack and attacks the outer covering of the nerves.  This covering material is called the myelin sheath.  The myelin sheath is likened to the insulation on electrical wire.  When the insulation is removed, it is called demyelination.  A demyelinated nerve is susceptible to damage.  The demyelination leaves scar tissue (sclerosis) in many areas.  Many equals “Multiple,” scar tissue equals “Sclerosis.”  Add them together and you have Multiple Sclerosis or MS. 

            Myelin sheath, demyelination, sclerosis.  Cool terms.  Use them in conversation, people will be impressed!  When they are occurring in your body, it is not impressive.  My immune system is attacking the myelin sheath and damaging my central nervous system (CNS).  MS is also called an autoimmune disorder since the immune system is the culprit.  Without the nerves being protected, the nerves are prone to breaking.  This is common with MS patients and as a result they lose mobility and eye sight, experience numbness, and other things happen that aren’t great. 

            I knew that MS patients lose mobility and incorrectly thought that their loss of mobility was because of weakness in the muscle.  Wrong!  Losing mobility with MS patients has to do with wiring.  The brain isn’t wired to the muscle anymore and can’t send signals to the muscle.  Without a signal to the muscle, there is no control or movement.  It is important to note that we have many nerve pathways from the brain to the various parts of our body.  The symptoms of MS are dependent on which nerve pathway is damaged.  Tingling, numbness, or weakness may result from damage to specific nerve pathways.  Since there are so many places where the CNS can be damaged, it is important to recognize that two patients can have MS and suffer completely different symptoms. 

            Remember my neurologist?  He sent a colleague who specializes in MS.  The doctor explained that the first problem with saying it is MS is that you get labeled by the insurance companies as someone with MS.  It means I have the luxury of knowing that I can never let my health insurance lapse or my MS will be classified as a pre-existing condition and won’t be covered!  The second reason for her hesitation was life insurance.  Once you get labeled with MS, if you can get life insurance at all, the premiums become very expensive.  The doctor continued to explain that it appears that I have signs that are consistent with MS. 

I was labeled:  I had Multiple Sclerosis. 

She explained that it was rare for Asian men to have MS; but, there was no doubt that I was an exception.  “Thank you?” I said, wondering if she was paying me a compliment?

After the label, she told me something that I will never forget.  She told me that MS is incurable!!  She also told me that odds are high that I will have a normal life for at least ten years.  She said, “Most MS patients are able to live normal lives; however, the reality is that the body will break down at some point and most MS patients will suffer some form of disability after a period of time.” 

Not me, I am an exception, right?

"All men are frauds. The only difference between them is that some admit it. I myself deny it"
- HL Mencken

         In the audience, were countless people with various stages of MS.  Some of the people looked perfectly normal, like me.  Some were on crutches, and some in wheel chairs.  Most of the guests were women.  We sat at round tables as we ate dinner and the plan was to listen to David while dessert was being served.  I talked to some of the people at my table and was curious about their stories.  I didn’t like what I heard.  Nothing positive was being discussed unless you count slowing down a disease as positive.  There were good days and bad days, but there was no talk of cures, just accepting the conventional view and moving on.  It was the beginning of the realization that I was part of a group that is SICK.

            While we ate dinner and dessert was served, David Landers gave his speech. 

            David tried to be funny and was at times, but, the truth is, MS is not funny.  It is depressing and without a cure, the truth is, people with MS have a grim future.  David explained how MS had ravaged his body and continues to do so; however, with Avonex, he has seen a slowing of the degeneration process.  David explained his symptoms and how MS impaired his mobility to the point where walking was difficult.  David was selling his book, “Fall Down Laughing: How Squiggy Caught Multiple Sclerosis and Didn't Tell Nobody.”  I stood in line and he signed it for me.  I got Squiggy’s autograph after all.

            After the dinner, I chose to get help.  I met with a neurologist and started Avonex therapy.  I caved.

            A layman’s explanation of what Avonex does:  Simply put, Avonex is poison.  You inject it in your muscle and the immune system goes after it instead of your myelin sheath.  Avonex interferes with the immune system and therefore it is called an interferon.  After taking the injection, I had flu-like symptoms, the shakes, body aches, and/or fatigue. 

There are primarily four different flavors of MS that are known to the medical community.  The different types of Multiple Sclerosis are Relapsing Remitting, Secondary Progressive, Primary Progressive, and Progressive Relapsing. 

            Relapsing remitting multiple sclerosis or RRMS is the most common form of the disease.  It happens to be the type of MS with which I have been diagnosed.  Basically it means that I will have a flare up (exacerbation) followed by a remission.  In remission I am symptom-free and back to “normal”.  Although remission doesn’t always mean 100% recovery, there could be residual damage.  The problem is that these relapses are very unpredictable and vary in duration.  In a relapse, the disease is very active where the nerves in the brain and spinal cord are being severely damaged.  

            No more denial.  I was sick.  God help me, I have MS!

“If the facts don't fit the theory, change the facts.”
– Albert Einstein

            Six months pass, I got an opportunity to move to Pittsburgh, with a new company.  Things were going well for a while until one morning, I woke up and the right side of my body was numb.  Last time it was my left side that was numb.  Same symptoms, toe to the face, numb and tingling.  “Uh oh, déjà vu!”

            The neurologist that I had in Pittsburgh was a lot more brutal about the diagnosis than the one in Dallas.  I had the progressive type and it was serious.  He left the room and I thought, “I am not sick!  I refuse to accept the fact that I have MS because, because … I don’t.  Period!”

            Laura, concerned, gave me a flyer for a dinner and see David Landers, the guest speaker. 

            The name David Landers may not ring a bell unless you remember Laverne and Shirley from the 70’s.  Laverne & Shirley was a TV sit-com on ABC that ran from 1976 to 1983.  It starred Penny Marshall as Laverne De Fazio and Cindy Williams as Shirley Feeney, roommates who worked in a Milwaukee brewery. 

David Landers played the role of Squiggy a funny character on the show.  I enjoyed the show and always laughed at Squiggy’s antics so I went to see what David.  All I wanted was Squiggy’s autograph instead what I saw at dinner was quite troubling. 

"When any calamity has been suffered, the first thing to be remembered is how much has been escaped." 
– Samuel Johnson

            My story starts when I was 34 years old, it was 1999.  I woke up in my Dallas home one morning with an unusual numbness that started with my left toe and went all the way up to my left cheek (on my face).  The entire left side of my body was numb and tingling.  “Hmmm, I’ve got to get new pillows,” I thought.  The numbness and tingling didn’t go away for a few days.  As frightening as this numbness was, I did what every normal person would do:  I ignored it.  The last thing I needed was to talk to my doctor about pillows!

            Not the smartest move because the tingling didn’t go away and I was getting a little concerned.  So I did what every normal person would do, I ignored it some more.  Wow, this feeling wasn’t going away and thanks to the numbness, I was running into things and appearing more clumsy than normal.

            I finally agreed to see a neurologist who took an MRI of my brain and spine.  When I got back to my hospital room Laura was waiting for me.  I was reconnected to the steroid IV when the neurologist came back in and told me that they reviewed the findings with other doctors and concluded that there was something abnormal in my brain.  My loving wife looked at the doctor and simply burst out laughing!  “I could have told you that, you didn’t need a MRI for that kind of information.”  I am surrounded by comedians. 

            Humor has always been part of our life.  Laughter is the core of our family’s strength.  Trust me, laughter would be the thread that keeps our family stitched together.

The neurologist looked at Laura amused and said to both of us, “No, really, there are some ‘incidental’ findings that clearly indicate an issue that is causing the numbness.  We will continue the steroid treatment and see what happens.”  He walked out and said while leaving, “I’ll send another colleague that specializes in MS.”  He was gone, Laura and I just looked at each other incredulously.  “What did he say?” I asked, “MS?!”

            Laura was relieved that it wasn’t more serious because it could have been.  Nonetheless, we were both concerned and rightly so.  Multiple Sclerosis is serious, right?  Doesn’t Jerry Lewis have telethons for MS?  Obviously I didn’t know the first thing about MS.  That was all about to change.

This is my dad walking me down the aisle on my wedding day!

The adventure is just getting started.  I wish I could tell that handsome young man of how precious time is, how fleeting each moment is.  Enjoy every one of these experiences because before you know it, the bell will ring.  Recess will be over.  New people will be on the playground.  The question, young Akhil, "Did you make a difference?"

This blog will be the answer to that very question - Did I make a difference?  More importantly, WILL YOU?

My story isn't over; but, I thought I would share my adventure while I can ...