The day started a tiny bit chilly with a small breeze in the air.  However the sun was shining and things warmed up nicely.  Outside spring cleaning was on the agenda consisting of trimming bushes, preparing pots for spring flowers in another month or so and cutting decorative grasses that grew with abundance last year.  Of course, there is the need to clean up all that gets cut as well.

There is something about Spring that brings out the best in people.  In this case a new season wasn’t needed at all.  We had the privilege of having one of our Extra Hands team over today.  For a refresher, Jennifer and I started the Denver Chapter of Extra Hands in 2005 after it had been founded in St. Louis by Jack Orchard.   Jack saw the incredible need for  ALS patients to get some help while educating students on some of life’s more difficult lessons.  Extra Hands has since been adopted by the Rocky Mountain Chapter of the ALS Association since 2009.  Thank you, ALSA!

Hedge trimmer, check.  Branch clipper, check.  Gloves, check.  Chainsaw, check.  Gotta love all the gadgets that come out this time of year.  For over two hours our three students put their backs and hearts into helping us clean up our yard.  We filled six 45 gallon bags with twigs, evergreen needles and other debris!  They certainly kept me going as I have a hard time staying out of a project, but I simply could not keep us with these healthy young adults!  I include Jennifer in that last statement!  ALS has destroyed my endurance and strength, but not my spirit.  They were able to spend some extra time eating lunch with us and catching up.  The energy young people bring into our lives is priceless.

Thank you all for your help today.  We couldn’t do it with out you!

Acts of Kindness

Jennifer and I were watching the TV show Undercover Boss the other night which featured United Van Lines.  This show usually takes the CEO of a featured company undercover to visit the front line employees and facilities.  Employees who they worked with under guise are then brought back to the corporate office for feedback.

This particular episode brought back strong feelings from our initial diagnosis strangely enough.  As we watched the movers in the show packing a house up and then moving  the heavy furniture and limitless boxes onto the truck, we were reminded of an incredible deed from over 9 years ago.

I worked for Sprint as a Data Sales Manager before the ALS diagnosis and had some wonderful friends and colleagues.  We had sold our two story home in favor of a ranch style for mobility purposes.  About a month before we moved, we were surprised by my old crew at Sprint with a timely gift.

One of Sprint’s major accounts back then was Graebel Van Lines.  My former colleagues had asked them for a favor.  We were presented with a $5000 moving package at a casual Sprint gathering and it knocked us for a loop.  As I write, I am reliving the relief and joy of that presentation with tears in my eyes.

This was the 5th house we were moving into, not including two apartments in between.  Not once had we had professional movers.  We really didn’t have a full grasp of how much they really do.

Moving day came and of all days on September 11, 2001.  The movers had already unplugged the TV’s when we received the call from a friend about the attack.  We plugged the TV back in and watched in horror as the second plane hit.

So on this doubly emotional day we had as stress-free of a move as could be possible thanks to some very thoughtful friends and an incredibly generous company.  Our move went over $5000 and Graebel waived the additional fees!

These memories keep my positive mental attitude intact and remind us how very fortunate and blessed we are.  In your daily life, what are you doing to keep positive and mindful of your blessings.  Are you paying forward random acts of kindness that may impact someone for life?

Have you ever stopped to think that everyone has something going on in their life that effects their behavior?  The man who just cut you off in traffic, the women who screamed at the bank teller, the homeless person on the corner asking for money.

I am dealing with ALS, true enough.  However, there are people out there dealing with divorce, abuse, poverty, hunger, depression, other illnesses, etc.  The thing to keep in mind is that there is always someone that has it better than you and always someone who is worse off.

It is so easy to judge the person behind the behavior, but in all truth we rarely know what is driving the specific behavior.  Let me share an example:

Our family was running errands and we stopped at King Soopers.  Because of my ALS, I have a handicap license plate and placard.  I was tired and wanted to stay in the car while Jennifer picked up a few things.

A man walked in front of our car and the handicap parking space.  He looked at the emblem on the car…then up at me…then back to the car…and then mouthed something to me.  I opened the door and asked him what he said.  “You’re a tool,”  was his reply.  O.K.  I’m not sure what that means, but I know it is not complimentary.  He mentioned that I don’t look disabled and I countered with the fact that I have ALS and he didn’t know what he was talking about.  He went back to the “tool” comment and walked into King Soopers.  I was smoldering.  Still waiting for Jennifer to return I calmed down until my “tool” friend returned.  I rolled down the window, “May I ask you a question?”  He did not reply.  I asked, “What does disabled look like to you?”  For all he knew I was a paraplegic sitting in the car.  He just shook his head and continued walking.  My final comment, “I hope you sleep well tonight.”  I wanted him to think about our interaction that evening.  I sure did.

I was really upset by this mans audacity and ignorance.  (Ironically, I had previously been judgmental to whom should be in handicap spots before ALS).  But then I started feeling sorry for him.  Something in his life triggered his reaction that I was completely unaware of.  Could he just be class A jerk?  Sure, but something would have made him that way.   I just fell right into it with my verbal volley.  The moral for me was that all of us are wired differently and maybe my job is just to observe behaviors and not judge the people.  It takes a lot of the angst out of situations and keeps me mindful.  This leads to less stress and I’m all about that!

Don’t get me wrong, I’d like to say this is how I handle all confrontation, but I would be a liar.  However, taking the time to review a situation and evaluate how things could have happened different makes us better people for the next time somebody’s “issue” comes right smack in the middle of our perfect lives and upsets the apple cart.

Our world needs more patience and understanding.  There is so much conflict that could be easier resolved.  Will this mindfulness bring peace in the middle east?  How about fixing our financial or political system?  I don’t know, but if we all put a little positive energy out there, I know it will help.  What do you think?

Ten Years!

On March 7, 2001 I received my initial diagnoses of ALS.  Since then, I have had a total of four neurologist’s opinions and each time I was hoping for a different outcome.  But alas, it was not to be.  For a physical reference I reread my posting from Five Years.  Interesting.  I could almost re-post that article regarding my health with a few exceptions.  I’m just stunned.  There is more weakness in the hips and shoulders, but I still have not lost function of anything in particular.  Jennifer might argue that my brain has atrophied and I would tend to agree!

It seems as though ALS attacked me and then lost interest and neglected to continue with much zeal.  I am very grateful for this.  And yet, it leaves me in this purgatory of life not really belonging to the normal functioning group and definitely not belonging to the normal progressing ALS population.  Because of this my mental state has not been as strong as what it was when I posted Five Years.

My involvement with ALS has taken me from local support groups to the national MDA,  ALS/TDI via the Tri State Trek and Northwestern Mutual Insurance.  In 2005 we established the Denver Chapter of Extra Hands for ALS and after the national organization faltered in 2008, our chapter has been energetically resurrected by the local ALS Association Rocky Mountain Chapter.

However, since 2008 I really haven’t been involved with ALS too much.  Jennifer’s dad, Bob got very ill with cancer complications from his lung transplant and passed away in May of 2009.  Jennifer’s mom, Bettie was diagnosed with lung cancer the following January and passed away in May of 2010.  We had also attended an unusual amount of funerals and our son literally wondered if we “knew everyone who dies.”  It was time to take a break.

Occasionally, I will attend a high school recruiting meeting for Extra Hands and ALSA.  I really enjoy this as it reminds me why we started Extra Hands here in Denver those many years back.  These students are amazing and really gives me faith that our youth can do anything they set their minds to.  In fact, we all can and they help solidify that for me.

Jennifer has been quite busy during the last year, taking personal and business development classes.  One of her new businesses is helping family caregivers in their journey.  She recently informed me that 8000 baby boomers a day will be turning 65.  So at some point we are all going to be faced with a caregiver situation.  Please visit her  website at www.caregiverpath.com.

So for the last two years now, I feel a bit like a bump on a log.  Just watching things go by and not harming anything.  But, I sense I lost my purpose again.  What a fickle beast it is.  I feel my best when I am helping people.  I guess over the last two years I felt that since my progression is so slow and I have difficulty relating to the normal progression of ALS that I have no right to speak about the difficulties of ALS any longer.  What could I say that would be a benefit of those that are dealing with ALS now?

Well, I am willing to give it a try anyway and wanted to use my ten year anniversary as a relaunch of this website with a new look and more information.  I will be posting more with audio and video tools and providing resources that I hope will help those with their ALS journey.  If some of the old postings have links that are not working, please bring them to my attention and I will do my best to remedy the situation.  I am open to feedback on what you want to see or know about.

I humbly ask you to subscribe to my postings by filling in your email in the pop up at the bottom of the page.  I had a good subscription list with the previous version of this site, but I have been unable to access it for quite some time for some reason.

There are quite a few of us with very slow progressions and hopefully that gives hope to those already diagnosed.  The doctors have statistics, but each case is individual.  Challenge yourself to be the most upbeat and positive you have ever been in your life.

New Years Contemplations

We often reflect at the end of the year
Was it good, was it bad, was it ever quite clear
The past is important as we chronicle our history
If we don’t do it now it will be just a mystery

The New Year is in front of us dangling a carrot
Our minds will come forward with things of merit
Our future is uncertain this upcoming year
The best we can do is contemplate and cheer

The past and the future are important they say
But we know all along what the truth will portray
Right now is what matters if we will take the time
This moment, this second is the one most sublime

~All the best for the New Year…Steven

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?

During these days of uncertainty in the stock market and our country’s economy, I try to find different ways to keep on track and stay genuinely happy.  I wanted to share two tools I use on a regular basis.

In my life coaching practice I work with people in transition; both in their work and personal life.  One of the tools I use is visualization.  This is the process of forming mental images to help obtain your goals.  Some people use mind pictures, others use visualization boards (recently on Oprah) to achieve great things in their lives!  The instrument I use is called Mind Movies based on the Law of Attraction.  It is what I call visualization on steroids!   I personally love the idea and figure it sure can’t hurt spending three minutes in the morning starting off my day and ending my day with such a positive message!  Please watch, Jennifer’s Mind Movie and let me know what you think.  Steven is working on his as well.

Another tool I use in both my personal and business life is called SendOutCards.  I found this tool during a marketing class I was taking, saw the profound possibilities and signed up the next week!  The entire philosophy of SendOutCards is to act on our promptings!  What are promptings you ask?  They are thoughts you have during the day when someone comes into your mind and you are wondering how that person is doing, happy birthday, wishing them to get better or whatever!!!  This system makes it easy and affordable to act on those promptings!  I call it sending out “card love.”

Another great piece of this system is for your business!   I really believe sending a card is the true essence of relationship marketing.  We all know with today’s economy, now more than ever, we need to show our appreciation in the business realm to maintain and grow our customer/client base. SendOutCards has over 13,000 cards, gifts and gift cards to choose from with a vast business section.

With the holiday’s right around the corner, I would love to show you how easy and inexpensive this system is to use for both your personal and professional life!  Please click HERE to send out two complimentary greeting cards using the SendOutCards system.  Don’t wait for a birthday or anything, just send a card to someone you are thinking of right now.  You will see how easy it is to act on those promptings.  Also feel free to watch the DVD presentation on the web site about how the company got started.  If you have any questions please feel free to call (303-423-3779) or email me at Jennifer@livingyourpotential.com!

Have a fabulous day!!

Blessings, Jennifer