Five Years!

Imagine getting told that you have only two to five years left to live, get your affairs in order, and don’t plan anything more than three months in advance.  What would you do?

It was five years ago today that I was formally diagnosed with ALS.  I had a total of three opinions, the last of which was requested by the one and only Jerry Lewis.  He refused to believe that I had ALS and set up the third opinion with one of the leading ALS neurologists in the country, Dr. Stanley Appel from Baylor College of Medicine in Houston, TX.  Even Jennifer allowed herself the thought that they might be wrong with my diagnoses.  I had hope, but I knew in my heart it was ALS.  I had every symptom, it was just moving slowly.  Unfortunately, Dr. Appel had to make the call the Jerry Lewis that it was indeed ALS.

Statistically, I had an 80% chance of being dead by today.  I haven’t been in the top 20% of much, so I’ll take the top 20% of survival!  Today is the completion of my first goal I set after my 40th birthday, making it to five years.

I have been to more funerals than I thought I would attend in a full lifetime.  The vast majority of these were for people diagnosed with ALS after me.  I’m astounded by that fact.  On occasion, I also experience a sense of guilt that I’m still here.  I’ve been told that I shouldn’t feel that, but I do.  The other side of that is the experience of being truly blessed.  That, by far outweighs the guilt, I assure you.

Physically, I’ve been told I look quite similar to days gone by.  I wish I felt that way.  My progression is quite different from that of most of my ALS comrades in many respects.  The doctors and textbooks say that pain is typically not a symptom of ALS.  Technically, I would agree that the loss of motor neurons is not painful.  However, for me, the loss results in a constant level of discomfort in the form of twitches, spasms, cramps, fatigue, joint aches, soreness and sharp pains.  Many ALS patients do not experience pain, but most have a steady stream of muscle function losses leading to paralysis.  Some patients have both.

I have not yet had a complete loss of function in any particular limb, speech or swallowing.  However, my endurance in these areas has been dramatically compromised.  Muscle loss is evident in my arms, shoulders, hips and legs.  I cannot stand or walk for long periods and use a wheel chair for extended walks, i.e. airport, malls, etc.  There has been a couple choking incidents, leading to more cautious habits.  Personal hygiene is manageable, but can be exhausting and frustrating.  I find I can start many things only to succumb to fatigue.

I have not driven in 4 1/2 years, primarily do to the frequent repetitive movements and endurance required.  The last time I drove was to take Jennifer to the hospital for an emergency Appendectomy.

Due to breathing difficulties, I have been using a BiPAP (Bi-level Positive Air Pressure) machine for 1 1/2 years.  This noninvasive ventilation is used at night, frequently by sleep apnea sufferers.  There are actually clinical studies being done to test whether early intervention with BiPAP leads to enhanced longevity.  This machine essentially allows all my breathing muscles a chance to rest while I sleep.  I still get winded doing simple things like even talking too much.  That may come as a relief to some of you!

The ALS Association was kind enough to purchase a specialized mouse for me.  The brand is RollerMouse and puts the mouse capabilities right below my keyboard, minimizing my shoulder movement.  I have written the last several postings using voice recognition software called Dragon Naturally Speaking.  This is on loan from ALSA as well.  It allows me to dictate into a microphone, correct words or phrases, all without touching my keyboard.  The common theme to all this is energy conservation.

The reason for writing this physical summation is not for pity.  It’s more for my own reconciliation of where I’m at after five years.  It may sound like a lot, but considering the alternative, I am very, very lucky and thankful.

I’m beginning to understand why this disease is so difficult to research.  It manifests itself and progresses so differently in each patient.  It has to be difficult to find patients that are similar enough for clinical studies to have meaningful results.  Why do some people have limb onset ALS while others have bulbar symptoms first?  Why do some people have pain and others not?  How can there be a sporadic and a hereditary type?  Why are there fast progressions and slow progressions?

Emotionally, I’ve never been stronger.  I feel I have lived more in the last five years than many people do in a lifetime.  I did not grow up with any religious background.  It has grown over time and curiosity.  My belief in God and Jesus Christ as my Savior has blossomed and I am comforted by where I am going next.  Everyone is on their own spiritual journey.  I respect them all.  I guess I feel that if I am wrong in my beliefs than what harm has been done me?  I have lived happier, more lovingly and been comforted by it.  I do not fear death which allows me to concentrate on this life.  There are many things I give credit to for my slow progression; specifically many prayers, my family and friends, low stress and a positive attitude.

Jennifer and I continue to feel oddly blessed by this disease as it has changed our life perspective for the better.  We have been immersed in the ALS community for a long time now and to varying degrees.  We started with the MDA and continued with Northwestern Mutual Insurance, the ALS Association, Tri-State Trek and the ALS Therapy Development Foundation.  We now continue with our mission by launching Extra Hands for ALS in the Denver area starting last November.  The feeling of positively affecting other people’s lives is intoxicating.  It has brought a stronger, more meaningful purpose to my life.

I could not do any of this without my wonderful bride, Jennifer and incredible son, Christopher who give me inspiration everyday!

On to the next five years…