I wasn’t the photographer for the evening, but I did have a little point and shoot camera in my pocket and couldn’t resist snapping these pictures from a distance.

The attractive young lady is Aimee.  If you have been following the blogs you know Aimee.  Please read my blog for Mother’s Day or visit Aimee’s site.

The handsome man in the picture is Ralph Russo, the honoree of the dinner.  Ralph and his wife Laurie have three grown children and one grandson.  Even though I am a day early, Ralph is my pick for this year’s, Father of the Year Award.

I was in awe of Ralph well before our short encounter at the awards dinner.  I had read about his successful career with Sara Lee. But I was even more impressed with what he has done with his life after he resigned as President and CEO of Sara Lee Coffee & Tea Division because of his diagnosis of ALS.   Though, ALS has progressively diminished Ralph’s physical abilities, it has not altered his spirit nor his determination to live each day to the fullest.  At the dinner Ralph told me that he felt that his diagnosis was a “calling.”  It is this attitude that I have witnessed in so many ALS patients that inspires me.  Well, whoever does the “calling” picked the right person to lead the battle against this dreadful disease.  Ralph has done an amazing job of fundraising and educating about ALS.

Yesterday, when I talked to Ralph he said he was looking at the picture on his desk of Lou Gehrig giving his famous speech with his head drooped.  Ralph’s head is not drooped and he is doing everything possible that we don’t go another sixty or seventy years with no answers to curing this disease.  Ralph said, “My life is an open book.”  I would like to share with you a letter Ralph wrote to family, friends, and caregivers not long ago.  This will give you a glimpse of life with ALS, hope for the future, the insight of a leader — and a “soapbox” message for us all.

Dear Family & Friends,

Well, we made it back home yesterday (Monday) and since I’m experiencing some recovery discomfort albeit on some good “meds”, I thought I would take my mind off that by writing all of you a novel of our experience and journey, as well as, take this opportunity to get on my “soapbox of life” to share a few reflective affirmations toward approaching life’s many challenges.  First, a layman’s explanation of the surgery:  it was a couple hours in duration and was twofold in nature.1st, to place a feeding tube so that should I either no longer be able to eat orally someday or simply not like what Laurie is making for dinner (bad Ralph humor), I will be insured good nutrition.  We did this now to keep us ahead of the curve, but as of now, it’s really just an unused accessory.  2nd was the more exciting and progressive procedure, namely, installation of the Synapse DPS (diaphragm pacing system) which is an official FDA approved clinical trial that involved placing an electrode into each diaphragm with an external battery powered device that exercises the diaphragm.  A key objective is to sustain the most vital/life sustaining muscle in the human body, i.e., the diaphragm.  The surgery, went well and the pioneering surgeon, Dr Ray Onders, expressed excitement that he found the physical condition of my diaphragm muscles to be in much better shape than my breathing tests otherwise had indicated (let me tell you Dr Onders, Mary Jo Elmo and the rest of his team are real “Rock Stars” and their enthusiasm is contagious.wish you all could have met them.caring, action oriented and knowledgeable.all traits I admire!)  Consequently, he feels even more confident that the pacing device installed will have a tangible improvement to my breathing function as early as after 3 months of use.  The premise of the device is that it exercises the muscles to thicken them and to turn them into type I/ fatigueless muscles. Anecdotally now, I have something in common with “Superman” since Christopher Reeves was Dr Onders 3rd installation of the DPS system.  The DPS was successful in removing Mr. Reeve from full time mechanical ventilation. Of course, in my case, we are hoping to be proactive in sustaining life at least 2 years longer by maintaining diaphragm strength, thereby, providing more time for an eventual cure (incidentally, I am his 20th ALS patient). 

Okay, now this is the “soapbox” part that reaffirms many fundamentals we perhaps all strive to maintain.  As many of you know, accomplishing this surgery in itself was not easy as there were some requirements that had to be met and obstacles that had to be overcome, namely, travel, foreign accommodations in Ohio, emotional evaluation on whether or not this was the right thing to do and finally, my breathing needing to be minimally a 45% FVC (forced vital capacity) at the time of surgery.  While the latter was seemingly an easy task as it was 50% only 6 weeks beforehand, it turned out to be anything but since it had actually decreased to an alarming 39% just 2 weeks prior to scheduled surgery.  Consequently I remember thinking and even saying to some of you, “this isn’t looking too good, not only for the surgery, but for how long I’m going to be around. Thus, as I see it, regardless of the outcome, it will be God’s Will, but not before me pursuing everything humanly possible to steer the course”.  Now, in reflection, I could not be more grateful that we stayed the course, aggressively pursued FVC therapies and continued testing and re-testing the FVC right up to the very day before surgery when I achieved 46% (don’t want to see the bill though)! And all this has reinforced to myself some very important fundamentals that I feel should be passed along for all of you (who I care so much about) to remember in your own continuing lives.and they were principles I personally tried maintaining as a business leader and parent…namely, that FAITH, GOAL SETTING, RISK TAKING, ATTITUDE, DETERMINATION, TAKE CHARGE/BIAS FOR ACTION and SURROUNDING YOURSELF WITH THE RIGHT PEOPLE, will lead to whatever you want in life or at least exhaust all the human elements before turning matters over to the Almighty, no matter how great or impossible the obstacles may seem.  I say this because in the absence of any one of these factors, it would have been very easy to abort the mission and let the natural course of this disease occur unchallenged.  Regarding the last factor, “having the right people”, very special kudos’ must go out to Northwestern’s Jennifer Armstrong and Drs. Lisa Wolf and Scott Heller who very efficiently got me all the incredible equipment and therapies that improved my breathing in just the nick of time.for that matter, they brought my attention to DPS in the first place!  And certainly kudo’s to, my wife and best friend, Laurie who is my new hero having administered all the therapies and having gotten us to and from Ohio safely and with “mission fully accomplished” result!

And last and certainly not least, our biggest kudo’s to you for all of your prayers and well wishes that helped give us the courage and strength to take this unconventional step in hopefully slowing the course of this disease.it’s been quite an “adventure” and you have no idea how grateful we are having you in our cheering section! 

So having expressed all this, diligence in using the DPS device and time, will both tell us if we discovered a hidden gem and/or at the very least will help the researchers make sound decisions for others living with ALS.regardless, we know we kept trying and never gave up.we feel that this in itself is a victory!

Warmest Regards & Love,

RALPH & LAURIE

Ralph and Aimee have the internal strength of the mountains we have been seeing on this RIDE, smiles that warm us like the afternoon sun shining on our backs as we climb a hill, bodies like the pure mountain streams that race down the hill of life to eventually come to rest, and a spirit that will soar for years and years — like this new born osprey that I saw today who has not yet left his nest.

Why do I ride?  Do you need to ask?

These two people stand as tall as these pines in my mind...

... they are gifts to us like these flowers and sunsets I saw this evening…

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