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

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.

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.

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. 

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.

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. 

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