It’s Been a While!

It was brought to my attention recently that I have not posted personally on this website in over a year…thanks Tiffany!  Realizing that no news from the author is a bad sign, especially when he has ALS can be of grave concern…literally.  My apologies to all the incredible people who have continued to visit this site and hopefully drew some sort of inspiration from our journey.

It has been well over eight years since I was diagnosed with ALS.  After passing that milestone in March of this year, Jennifer and I could not help but wonder…maybe they got it wrong.  Maybe the doctors that were practicing medicine were truly just practicing and didn’t know what they were doing (no disrespect intended.)  We found a new, unbiased (had not seen me before) neurologist in the Kaiser system to reevaluate me, actually looking for something called multifocal motor neuropathy (MMN) that might explain symptoms in very slow progressing patients.  MMN is treatable to boot, so we started getting our hopes up.

Dr. Foley went through the traditional batteries we ALS patients go through including nerve conduction velocity (NCV) and electromyography (EMG) tests albeit more thoroughly than before, especially the NCV which checks for MMN.  Sorry for all the acronyms, but if I had to spell these out all the time I would not be able to finish this article!  His result, “The good news is you have no nerve blockage, the bad news is you have no nerve blockage.”  In effect, I did not have MMN and ALS was the only explanation for my upper and lower motor neuron symptoms.  Bummer.

From December 2007 to around May 2008 I had a new treatment performed called dry needling.  It was suggested from a dear friend and physical therapist of ours, Pam.  She had been having encouraging results with Multiple Sclerosis (MS) patients and wanted to try it on me. Think of acupuncture in a western medicine application.  Very thin needles are inserted into the muscle as deep as possible.  This is slightly uncomfortable, but not painful.  A mild electrical current is applied to induce spasms.  The theory is that our bodies only use about 20% of the motor neurons available to fire off a muscle.  By stimulating or recruiting additional motor neurons we may be able to compensate for the loss of those neurons inherent to ALS.  My hamstrings were one of my weakest muscles at about 3+ on a scale of 1-5, 5 being the best.  When the recruitment of new motor neurons happens, I believe muscle strength is not only sustained but possibly improved.  After dry needling my hamstrings were measuring between 4+ and 5-.  I have a very slow progression and think I responded extremely well to this technique.  It has been a while and I don’t know where my numbers reside at this point.  I was hesitant to write about this therapy because of my slow progression as I felt it that may have skewed the results.  I did not want to offer false hope.  Lack of endurance is my biggest downfall.  Please contact me if you have any questions about this approach.

Life moves on.  Chris, as he likes to be called now is 11 years old and ruling elementary school as a big sixth grader.  He is really enjoying this year so far even though he’s only a week into it and actually said math is hard but it was really fun.  Music to my ears for this old math major!  He became a boy scout in May and is really enjoying it.  One of our friend’s son’s just became an Eagle Scout and it was very inspirational.

Jennifer is the one who has posted a few times in the last year referring to her life coaching practice, Living Your Potential.  See her article from October 1, 2008.  She has also started a greeting card business called SendOutCards that has become an exciting prospect.  On a sadder note, her father Robert Kennedy passed away on May 2, 2009.  He was the patriarch of the Kennedy clan and will be greatly missed.  Even with all this going on, she continues to be the rock of this family and I am incredibly blessed to have her in my life.

Being a voice over artist is my new venture.  In case you don’t know what voice over is…anytime you hear a recorded voice, anywhere, it is a voice over artist. We can do commercials, audio books, documentaries, narration, corporate training, podcasts, phone trees, video games, etc. It is incredible where you hear the recorded voice!  Now I realize this could be a really stupid, short lived escapade being an ALS patient where most of us lose our voice eventually…but what the heck!  I just recorded my demo with five commercials and four narrations and had a blast.  It should be ready in about six weeks.  My instructor told me she could not believe I had not had any previous coaching.  I do believe the public service announcements we did for the MDA and all the public speaking over the years has helped tremendously.  I don’t know what will happen from here, but at this point it would be nice to recoup the cost of the class, equipment and studio time!  Aren’t life’s unknowns’ exhilarating? 

What are you doing to add spice to your life?