The Legeckis Wave

October 2011

Dear family and friends,

Richard Legeckis, our beloved Tato and Poppy, passed away on Oct. 21, 2011 after an almost 2 year battle with ALS.  He left this world peacefully with his wife Marta and two daughters, Alina and Vanessa, by his side.  We miss him very much but we know he has gone to a better place where there is no suffering and no ALS.

This site is dedicated to Richard Legeckis, our beloved Tato and Poppy, who was diagnosed with ALS last January.  We named this site The Legeckis Wave for several different reasons.  Most of you know that Richard is an oceanographer for NOAA, but what you may not know is that there is a wave pattern in the Easten Equatorial Pacific that he discovered earlier in his career. These waves are very long (~1000 kilometers ) and are only seen from environmental satellites that are used to monitor ocean temperatures and currents. That wave is known as the Legeckis Wave, something that my sister and I always thought was pretty cool.

Over the past two years, we've felt an enormous surge of love and support from family and friends once word got out that our Tato was diagnosed with ALS.  When we were trying to think of a name for this site, we picked The Legeckis Wave because we truly felt that we have this enormous wave of support surging up behind us as we march forward on this journey together.  The wave continues to grow and we can't express how much we appreciate all your kind thoughts, words and deeds over the past two years.  It's been a long road but you have all made it easier to bear.

Feel free to donate directly on our site to ALS TDI, a leading research institute dedicated to finding a cure for this terrible disease.

Please take some time to read some words from Richard after he was first diagnosed with the disease.  The excerpts below are taken from a series of emails between Richard and some friends and colleagues.   

The Legeckis Family


(these were written in the months following Richard's diagnosis of ALS in January 2010 - they speak to his unending positive spirit and love for life)


My main passion now is home repair (old house), my garden - replant and replant again what died, and PIANO.  I play the old songs 1920-1970 that
still have melody and romantic words: "Love is a many splendored thing, Somewhere Over the Rainbow, A day in the life of a fool" etc". I play by ear,
improvise without notes, since I learned some basic music theory. Great fun and I cry a lot when I hit the minor keys, sad parts - must be nostalgia.
 
I have recently started a new adventure. The best way I can describe it is the Coney Island, Brooklyn, NY roller-coaster: You reach the top and
suddenly it appears that there is only empty space beyond and it starts going down fast, faster, and much faster - you scream but hold on to the fact that it will take you home eventually. Hope springs eternal.

Unfortunately, in the present case I am going down with no safety net in sight. For the last 2 years I had strange loss of voice and more fatigue. After many tests and several wrong evaluations, I was finally tagged in January 2010 with ALS, a one way trip with no cure in sight. The probability
of getting ALS is 2/100,000. Why me, I ask. I use a breathing assist machine at night since my lung volume is now 50%. I have a feeding tube for supplemental nutrition since I am losing weight. Now my right arm is losing strength so I have to hurry to put in tiles in the kitchen before I am unable to do it.

We also were looking forward to travel some more but it will take more planning - slower paced trip basically for now
 
But my SPIRITS are UP and I still come in to work 3-4 days a week. I do everything slowly and appreciate everything more.  Life and friends are suddenly so dear. I am so glad you wrote. Just the thought makes me slobber, another ALS effect, among others.

There is a C/W song that sums it all up: " I wish that you could live like you were dying .......". I am hoping for a medical miracle before the inevitable.

Richard

When something like ALS happens, it is difficult to know what to say. I was no different when presented with friends who had problems of their own.
 
What I realize now is unfortunate people appreciate just a response, of any kind. And I am now aware of how many people around me are worse off than me. Once you accept that nothing in life is assured, you can accept what is handed to you.
 
I had great plans to live to 90 based on my family history. Like they say in the stock market, past performance is no guarantee of the future.
 
My wife approaches this adventure by saying "One day at a time" and that is what I we are doing. We laugh a lot and keep positive. Playing piano and guitar and home repair is my fun time while the motor muscles are OK.
 
By a quirk of fate, our 20 lb, 15 year old cat started to lose weight last year, at same time as me. He is now down 50% -10lb but still looks happy. I wonder if he has ALS too, a medical mystery or a real data point? Actually found a dog that has ALS but no cats so far.
 
I will probably quit work soon but am trying to eke out a paper on ocean fronts in Atlantic. Once this gets in your blood it is hard to let go. I like seeing what is really out there in the deep blue sea.

You will be glad you had daughters. For my experience they really come thru for you once they get their feet wet and realize what parents are worth.
 
Richard
 

Since my jump into the unknown of ALS, I went thru a period of confusion, then some intense anger, wondering "WHY ME" out of 50,000 people,  and basically feeling sorry for myself. After all this anguish, screaming, crying, slobbering, choking (on water), losing my breathing ability, I have resigned myself to my fate.  I wanted to continue to live but at the same time realized that life is a gift.

I saw and became aware of so many other people who had it worse than me, especially people whose lives are threatened at an early age, people just starting their careers, soldiers and others who are put in harm’s way etc.  They do not deserve their fate either and I resolved not to feel sorry for myself any more.  I became almost serene.

I can see more clearly what is important. This event has brought my family and friends closer together. I still shake when I realize the support of my family, how kind people can be and kick myself for not having more of the same myself. So something good will come out of this even if time may be compressed for me.

Richard

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