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Archive for the ‘Reflections’ Category

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.

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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

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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?

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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

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Living Your Potential

 

I wanted to let you know about my new business practice — Personal Coaching. Coaching is an effective process to support individuals in creating something new for them. I coach my clients by providing perspective and support for self-awareness as they accomplish their business and personal goals.

My website, http://www.livingyourpotential.com/ will give you more information about my practice and a window into the magic inherent in the coaching relationship. I would like to offer you a gift of a free sample session by phone. Whether across the country or just down the street, coaching can work for you.  To understand the value, experience it for yourself!

Coaching is a valuable process for:

-Designing life intentions that include both your business and personal goals.-Building your personal integrity and learning to base all decisions on your values.

-Making meaningful and personal changes that reduce stress and simplify your life.

-Freeing up energy and other resources to attract what YOU want for YOUR life now.

The emerging profession of coaching has been covered on the NBC Nightly News, Donahue and CBS, This Morning and has been featured in Newsweek and USA Today as well as in over 100 other major media outlets. Coaching has received this positive attention because of the success of the clients who use a coach.

Here is a sample of what the media says about coaching: “Coaching…a new profession is developing to provide support, training and tools to help people grow in their personal, work, social and spiritual lives.” — Common Boundary

“They call themselves ‘coaches’ — a new breed of career counselors multiplying nationwide, promising to help unblock barriers to success, and make you a happier, better person, to boot.” — Denver Post

“Progressive managers and consultants have long made coaching part of their jobs, helping employees improve their work habits and interpersonal skills. But in recent years, coaching has emerged as a distinct occupation and source of help in the workplace.” — Sunday Oregonian

I feel I have been a life coach for all of my adult life.  I now have the tools to put those skills into action.  Again, my website is www.livingyourpotential.com and gives you more information about my practice. Contact me at (303)423-4075 or jennifer@livingyourpotential.com if you’re curious. I appreciate referrals, so please keep me in mind when you are talking with friends and business associates.

Blessings,

Jennifer

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Summer Getaway

This summer our family had the opportunity for some old fashioned Colorado mountain time.  Some friends of ours belong to High Country Club, a destination club with access to over 30 luxury residences.  Some days were going to be unused and they were so generous as to offer them to us.  We chose to go to Copper Mountain, a ski resort about 75 miles west of Denver for some fresh air and fun.

Our condo overlooked the Village at Copper Mountain.  We were surrounded by a variety of shops for outerwear, activities and eating.  In winter, this is the center of action with the main chairlift just a stones throw away from the condo.  The open area would be filled with bundled up seekers of downhill bliss.

Summer is a different atmosphere.  Still the middle of activity, albeit more laid back, the Village had a peaceful aura about it.  The chairlift operated over slopes still awakening from the hard winter.  Even in late June, there were still drifts of white lingering from the frequent snow storms of last season.  The ride up the mountain still had briskness to it from intermittent cloud cover and a cool breeze.

Every day we had a wonderful experience as a family and we really valued it.  We were quite active the first day in the Village Square with Miniature Golf, Go Carts, Quad Power Jump, Bumper Boats, Climbing Wall and the Chairlift Ride.  Pursuant to my posting on Insanity in June, I pushed myself to see what my physical limits were.  I participated in all activities except the Climbing Wall as my body would definitely not support that and a nap was desperately needed anyway.  That evening, we had a wonderful dinner with some friends from Vail at a restaurant called La Tour and ended up running into more friends on our way out.

Thursday we went golfing with family friends that volunteer at the Copper Creek Golf Club.  They live in Florida during winter and Copper Mountain in the summer.  Their volunteer work allows them free unlimited golf for the season.  We were able to take advantage of that rate as their guests.  Christopher caddied and drove the cart.  That was scary at times on a mountain course, but overall he did quite well.  He was also our official photographer and enjoyed taking pictures of the beautiful terrain.

Friday was filled with a fishing adventure at Lake Dillon.  We had to walk in a little bit for lake access and I was grateful I had just purchased hiking boots that accommodate my leg braces.  They were a life saver as the path was filled with rocks and tree roots, a virtual land mine for ALS patients.  Christopher and I rigged up the fishing poles for bait fishing.  After several practice casts, Christopher had it down pretty well and so man versus fish ensued.  It wasn’t until Jennifer and Christopher went back to the car for snacks that the fish started biting.  I caught the first one while they were gone, of course.  Four rainbow trout were caught in all and Jennifer got some good reading in while patiently waiting for our lines to jump.

This mini vacation was probably the most activity I have had in the last two or three years as I wanted to see what I could do as opposed to what I think I should do.  I had an incredible time with my family and friends, so it was easily worth the temporary fatigue and pain endured.  Pushing limits for time spent this way is what adds to life’s abundance.  Have you reflected on how you are spending your time recently?

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Not all of us are historians.  All those dates and names are a blur to me for the most part.  However, on this day of American Independence as I hung up the American Flag, I chose to refresh my memory of the historic events that took place.  I do remember there were some problems with taxes from Britain and there was a shipment of tea that got dumped into a harbor.  These issues, among others eventually led to the Revolutionary War.  We won, of course, which led to the birth of this great nation.

I am embarrassed to say, but that is the vague recall of my early education of this historic series of actions.  I stumbled upon the web site Revolutionary War this morning and started reading.  I have just grazed the surface, but felt compelled to encourage all of us living in America during these difficult times to revisit the origins of this land we call home.

I know our annual festivities to watch the fireworks will have even more significance after my review of why we celebrate.  Understanding the meaning of our actions propels us to an entirely different level of perspective.  This is what life is about; actually feeling what we experience.

So when we have musical artists singing a different song (click here for the reference article) to the tune of our national anthem, I have to ask; where is your patriotism today?  There is always someone better off than us, but the most important thing to remember is that there is always someone worse off as well.

If your patriotism is not off the charts, especially today, then take a look around the world and gain some perspective of our freedoms.  Happy 232nd Birthday, America.  Thank you to all our forefathers who made this great Nation the land of the free.

God bless, America!

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