Three letters that had absolutely no meaning to me two years ago, somehow managed to change my life forever........

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Real Estate Agent with Lattimer Realty

ALS Amyotrophic Lateral Sclerosis

I know some of my ActiveRain friends have wondered where I've been; some even reached out to me to see if everything was ok.  Two weeks ago my life was changed forever...........

I can still remember that day in August of 2008 when my parents came to my house and told me my mother was diagnosed with "ALS" (Amyotrophic Lateral Sclerosis) also known as Lou Gehrig's Disease.   Sure I heard of Lou Gehrig, who hasn't?  I even heard of the term "Lou Gehrig's Disease" but naive as it may sound, those three letters that I had never heard before and that had absolutely no meaning to me somehow managed to change my life forever. 

As spoken by Matt White Pregame Speech to the Butler Basketball Team (through his wife Shartrina):

ALS is a fatal degenerative neuromuscular disease that affects the synapse between the voluntary muscles and the nerves that control them. Eventually, all of the body's voluntary muscles atrophy and fail. Ultimately, each person with ALS dies when their diaphragm stops working and they stop breathing. When diagnosed, ALS patients are told the same thing Lou Gehrig was told more than 60 years ago - ALS has no known cause, no treatment and no cure. Over the next four years you will lose the ability to use your arms and hands, you will not be able to walk, you will not be able to speak or swallow, and finally you will not be able to breathe. ALS is 100 percent fatal, and you will most likely be dead within four years.

Two weeks ago and two years after diagnosis, those three letters "ALS" robbed my mother of her life, my sister and I of our mother, her grandchildren of their grandmother and my father of his wife.  

Lou GehrigJuly 4, 2010 was 71 years ago since Lou Gehrig gave his final farewell speech at Yankee Stadiumand yet there is still no known cause, no treatment and no cure for this fatal disease.  In lieu of flowers at my mom's services, we asked that donations be made to the Columbia University Medical Center, Eleanor and Lou Gehrig MDA/ALS Research Center, 710 W. 168th Street, 9-016, New York, NY 10032 so her doctor and his team can continue their research and one day find a cure for ALS

In Lou Gehrig's own words, "So I close in saying that I [my mom] may have had a tough break, but I [she had] have an awful lot to live for" and I don't know how to live without her. 

 Grief is the purest pain one will ever know............

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Rainer
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Angela Penkin
RE/MAX Plus - Rochester, NY

Oh Gina, I am so sorry for your loss. But in your sharing you made me pay attention to something I had not paid nearly enough attention too - and now I will. A friend from high school just emailed me about why she was not going to attend our reunion:

"I have a motor neuron disease that has the doctor's stumped they have labeled it as A-typical ALS.  I am still working but speech is difficult and tiring, it is affecting my head, face and neck. So going to reunion would be hard since all you want to do is catch up, and talk."

I am ashamed that I didn't take the time to look into this right away. I will do so now - and try to be a better friend.

Through your pain, sorrow and suffering you have done a good deed today. God Bless you and your family.

Aug 27, 2010 11:32 PM #1
Ambassador
1,344,122
Jon Zolsky, Daytona Beach, FL
Daytona Condo Realty, 386-405-4408 - Daytona Beach, FL
Selling Daytona paradise for heavenly good prices

Gina,

I am so sorry for you. You wrote a touching post. It is terrible that for somany years we are not really closer to treating and curing the disease.

Aug 27, 2010 11:36 PM #2
Rainmaker
103,741
Eileen Liles
970-216-0530 http://WeSellDeltaCounty.com - Cedaredge, CO
Macht-Liles Real Estate Group - Cedaredge, CO

Gina, you are so right!  Your family has been robbed and there was nothing you could do to prevent it.  Prayers for peace and solace to your family. 

Aug 28, 2010 12:11 AM #3
Rainmaker
486,914
Teral McDowell
Keller Williams Central - Plano, TX

Gina, so sorry to hear of your loss. I lost my dad at the young age of 28 and I can feel your pain (grief). I have learned that to keep talking about them keeps them "alive" and helps to ease the pain over time. May you find comfort in sharing.

Aug 28, 2010 04:00 PM #4
Rainmaker
345,361
Gina Chirico
Lattimer Realty - Fairfield, NJ
Real Estate Agent - Essex County, New Jersey

Thank you all for your kind and sincere words.

Angela, I sure hope they are wrong and that your friend does not have ALS.  Its a horrible, horrible disease that takes away every part of your body except your mind. 

 

Aug 28, 2010 04:56 PM #5
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Mark Menzella
RE/Advantage - Fairfield, NJ
We build websites for REALTORS®

My condolences and I am truly sorry for your loss.  My sisters friend was diagnosed with ALS and my heart goes out to everyone with this terrible disease. 

Aug 29, 2010 09:25 PM #6
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Gail C. Harris
Resource Network, LLC SFR, AHWD, ACRE, SMAR Board Director - Chesapeake Beach, MD
Reach the BEACH with Gail C. Harris (cell: 703.868

Gina, I am so sorry to hear about your Mom and her passing.  Thank you for taking the time to post on my blog about my Aunt's passing.  There are many diseases that are awful, none worse than ALS, that I can think of.  My husband's uncle passed two hears about from ALS and it was such a blessing on one hand when he passed but such a horrible death one wonders why do people have to suffer so.  I'm glad  your Mom, our Uncle, and my Aunt are at peace.  My aunt suffered so those past few months; but nothing like how people suffer from ALS.  My husband is afflicted by Amyloidosis.  Another rare disease where there is no cure.  The doctors gave him 1.5 years to live, and thankfully that was 3 years ago.  We belong to the support group and go to the Rare Disase Gala each year in Washington DC.  There are so many disease classified as "rare" for which people suffer so because there is no money for research.  My husband recorded a CD to leave us his music.  He put himself through law school playing the trumpet.  He hadn't picked it up for almost 30 years but felt how best could he leave us somethig to remember him by should this disease take him.  It can be hard at www.richardharrislive.com   It's such wonderfully soothing jazz standards from the 40's.  Music your Mom might have listened to when she was younger.  Like us, proceeds are given to the Amyloidosis Foundation from this recording.  We've raised over $10,000 thus far.  We want to do our part to help find a cure.  I hope with all my heart that there is an awareness about ALS so a cure can be found.  It's sad that money makes the world go round and it costs so much to develop a new drug and then nearly impossible to get FDA approval.  It's such a struggle.  However, ALS is one disease that we need to find the key to stop such unnecessary pain and suffering.  I love so the movie with Gary Cooper and Teresa Wright who played in the Lou Gehrig story.  What a man he must have been, just as my husband's Uncle was, too.  I bet your Mom was something very special, as well.  I'm sorry she's gone.  I'm so glad you are back here on Active Rain.  You have so much to share, and your blogs are so interesing and informative.  And, 4 featured posts...wow.  Thanks for coming back, let me know if you make the 30 day challenge.  :) Gail C. Harris... MD

Sep 18, 2010 01:05 PM #7
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Gina Chirico

Real Estate Agent - Essex County, New Jersey
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