Leo's Story

Honestly I don't know who you are, but I just finished reading your article
in the Inland Valley Bulletin so I pulled out my step dads memory card from
his funeral. We had inscribed on his card
"I have fought the good fight, I have finished the race, I have kept the
faith." (IITimothy:4-7).
My step father "Jack" came into my life when I was 1 1/2 years old. He was
the kindest, funniest, most loyal man I've ever known. I miss him daily...
but I have the greatest memories of him and I am so grateful he was part of
my life. He passed away from Lou Gehrig's disease on December 31, 2000. He
passed with dignity and bravery and was provided comfort care and I know he
did not suffer. I was at his bedside with him as he took is last breaths and
I was so honored to share this moment with truly one of my favorite people.
I am 34 years old now, I recieved my nursing degree in 2002 and work in the
intensive care unit at Scripps Memorial Hospital in La Jolla. I see a lot of
tragedy as well as miracles. Unfortunately we both know right now there is
not much hope for a miracle when it comes to Lou Gehrig's disease. I just
want you to know you have one more person praying for you and your family as
you endure this process. Everything happens for a reason and everyone WILL
BE OKAY! I'm sorry you have to go through this.
Thank you for your article. It has reminded me to be aware of the Walks and
Fundraisers which I'd like to be more aware of and contribute to. I will
share this article with the neurologist's and nurses I work with and
hopefully bring more awareness and more support to this devastating disease.
Be brave.
With greatest sincerity,
Meg Halaska

Posted by Leo Greene at 2:13 PM | Permalink | Comments (0)

I found myself staring at the article "The Signs were there: Diagnosis
confirms Lou Gehrig's Disease" it took all I had to read it because
on May 1st, 2005 my mother died from complications associated with ALS.
She was an incredible woman and a loving wife and mother. We miss her
terribly. Mom was incredibly courageous through her struggle with this disease
fortunately for her and for us she never experienced paralysis.
She was diagnosed with bulbar on-set ALS. Her ability to swallow and
speak was compromised-she too started slurring her speech about a year
before she was diagnosed. The diagnosis came in December 2004 I was with her and my
dad when the neurologist lowered the boom.
I will pray for you and your family. Be strong and focused to live the
rest of your life to the fullest. I prayed that mom would be
miraculously cured but God had other plans for her. I will now pray for
you maybe you will be that one person that "kicks" this disease. In
mom's continuing weakened voice she would say "I'm going to beat this".
She believed she would and she lived the rest of her life with the
intent of getting up every morning and doing her daily chores.
Please forgive me if I have overstepped my boundaries assuming that you
are a prayerful or religious person. I have attached the prayer my
mother said every morning and I am sure several times through out the day.
Leo, hang in there and know there are many people pulling for you-
My regards and best wishes to your wife and children,
Mary E. Brown
President & CEO, Sickle Cell Disease Foundation of California
PRAYER IN TIME OF NEED
I am hurting dear Lord, I ask you to listen to the cry of
my heart. Strengthen my faith and give me patience
to bear my troubles. Visit me your grace. I leave all my
cares to your wisdom, love, understanding and goodness.
Amen

Posted by Leo Greene at 4:47 PM | Permalink | Comments (0)

Mr.Greene, you are the third male in his 60's who has some form of Lou Gehrig's ALS. My brother three years ago had the same problems and it took several doctor trips to find what was wrong. He is in a nursing home - has major problem with the muscles in his neck. Do you have any clues why you and him have this problem? (the third male is the son of a club member) No family history slanted this way. I am lacking words, but I feel your pain.

Posted by Leo Greene at 4:29 PM | Permalink | Comments (0)

I don't even know where to begin. My name is Martha Martinez and my
brother in law Hector was diagnosed with ALS on January 2003 and lost his
battle in on December 23, 2004.
During the time if his illness I learned a great deal about the disease and
also learned of all the wonderful help and support that is out there for
patients and their families.
We were lucky enough to take part in some clinical trials at UCLA and we
were able to visit the ALS clinic at UCLA as well. I found that the MDA
was a wonderful resource for many things, but most importantly a wonderful
support mechanism for me.
Some of the things that my family and I did was divide his care amongst the
family members. I was in charge of physical therapy and equipment. I went
to the therapy appointments with him and followed up on all orders for
equipment. My husband lead the effort on all disability and medical
paperwork. My sister in law led the efforts with other medical
appointments. This was a more manageable way to divide the
responsibilities.
I am sure you have researched the websites. MDA has great information and
so does the ALS association. They provide great free reading materials
that will make you and your family more knowledgeable about the disease.
Please consider me a friend to correspond with and I hope this is
the beginning of a friendship.
In God's peace and love,
Martha Martinez

Posted by Leo Greene at 4:25 PM | Permalink | Comments (0)

I just read your recent column re-printed in ShopTalk and felt moved enough by your powerful prose to write.
Twenty-eight years ago, I was a 30-year old newlywed who'd just heard the diagnosis given by a hospital doctor to my beloved father: pancreatic cancer. He was dead within 50 days.
At my parents' home after his funeral, I found on a table the last book my father had been reading before his diagnosis-- a compendium of the teachings of the great world religions. In an effort to get as close to him as I could, I read the book and came upon a Talmudic teaching: When one laughs, one should never laugh with complete abandon, for tears are always on the horizon. And when one cries, one should never cry with abandon, for laughter is always on the horizon.
That wisdom might provide you no comfort, but it has sustained me through the last 28 years.
I pray that you and I-- and all whom we love-- will always see the laughter on the horizon until we close our eyes.
Steve Dickstein

Posted by Leo Greene at 4:21 PM | Permalink | Comments (0)

I just read your story reprinted on Shoptalk, a sort of tv and radio news industry's insiders report on the internet. I was so touched by it that I had to write...I never do this sort of thing but after reading your article I feel like I know you. I just wanted to thank you for sharing your story with the world. It's sad yet uplifting with your spirit for life bringing your struggle to life and into the light. I believe you can make a difference and that awareness is the key to changing the world and the world's attitude, and hopefully finding a cure. I wish you all the best. Your wife and children are very lucky to have such a strong, caring person as part of their lives, and that will indeed shape their lives as they take it's joys and challenges. Live every day to the fullest and keep a positive attitude...humor really helps.
Sincerely,
Sue Leavitt

Posted by Leo Greene at 4:19 PM | Permalink | Comments (0)

To say "God bless you" says so much, yet so little. As I have passed my 60th birthday I find myself every day (and night) wondering what nature has in store for me. And as I proceed I suppose all I can do is set the example for my children.
Go in peace.
Christopher Peake
Cos Cob, CT

Posted by Leo Greene at 4:17 PM | Permalink | Comments (0)

I wish you well from Dayton, Ohio. I read your story about your struggle with ALS. As a member of the media, I commend you for sharing your story with the world.
Most of us want to report the news and not become the news. This case is different. You are putting a face with this disease. You are painting us a vivid picture with your words. It's a picture hard to look at, but a picture I think shows us just how precious every day of life is.
I'm not a big church going guy, but I do believe God never gives us more than we can handle. I'll say a prayer for you tonight.
James Brown
WHIO-TV

Posted by Leo Greene at 4:14 PM | Permalink | Comments (0)

We were very interested in your article regarding being diagnosed with Lou Gehrig's disease. My husband, John, was diagnosed two years ago. We are living daily with the implications of this awful disease.
I was so glad you mention ALSLA. This association has been such a help. I attend the support group at Loma Linda. This has been so helpful and encouraging. I find it very educational because suddenly you have many needs that you don't know where to go to get help. I highly recommend this group.
I was also able to attend the National Advocacy Day in Washington, D.C. We called on Senators and Representatives presenting the needs of all ALS patients. It was a very empowering experience.
You have such a wonderful opportunity to help inform the public of the plight of those with this disease.
John is completely bedridden at this point in the disease. We feel very blessed because his speech has basically not been affected.
Sincerely,
Mary Chandler

Posted by Leo Greene at 3:55 PM | Permalink | Comments (0)

My name is Mark Wright. I anchor the evening news for Fox
affiliate KCPQ in Seattle. I just wanted to say your story touched me deeply. And
I applaud you for raising awareness of ALS. We've hosted the MDA Jerry
Lewis Telethon for years on our station, so we're very familiar with ALS
and the need for more research. We'll do our part this Monday to raise
money.
Thanks for what you're doing. I just wanted you to know you and your family are in my thoughts.
I wish you the best. I'll be checking your blog too. Take care.
>Mark
Anchor
Q13 Fox News at 10

Posted by Leo Greene at 3:49 PM | Permalink | Comments (0)

Thank you for sharing your personal story with us. It takes great courage and energy to be able to put your thoughts out there for all to read.
It is both inspiring and sobering to read your tale.
Please carry this forward for all of us to read and for your friends and family as well.
You make us realize that what ever problems we think we have in our lives (crazy boss, a small office, a frustrating commute, a bitter friend) these are all changeable and transitional. How can any of us complain when you are faced with what you are faced with and actually deal with it with such dignity and strength?
Have a good long weekend and while we do not know each other, I simply wanted to say hello and thank you. You touched me and my life… and for that I am grateful.
Best wishes,
Phillip Nakov
VP, Business Development & Partnerships
ReelzChannel.com

Posted by Leo Greene at 3:46 PM | Permalink | Comments (0)

A colleague of mine passed along your article to me - and I read it with great interest - and sadness. My father died of ALS at 61 years old, on Halloween night 3 years ago. Know that you have a lot of people who are - or have been in your shoes - and that it's a great big family supporting you.
Jinah Kim
NBC News/KNBC

Posted by Leo Greene at 3:44 PM | Permalink | Comments (0)

Hi Leo -- Just read your story on Shoptalk. I bet you're getting a lot of emails. I was struck by your piece. I just love simple, clear writing. I am just finishing Charles Bukowski's "Women" and I felt the same way about his writing. In contrast, I am in the middle of Adam Gopnik's "Paris to the Moon" which got the most fawning praise from every huge critic in the New Yorker-New York Times axis and I can tell you it is one stinking bore. I didn't feel anything in it. And I felt something immediately when i read you piece, and it was not just the tough subject matter.
Reading you made my miss my days at as a reporter at the Desert Sun (though not the Orange County Register, ugh, what a nightmare that place was!) and also made me remember what good writers can be found in smaller places.
Good luck - I wish a miracle for you.

Dana Kennedy

Posted by Leo Greene at 3:41 PM | Permalink | Comments (0)

I wanted to tell you how moved I was to watch the video and read the story of you receiving a diagnosis of ALS. Please know that you and your family will be in my thoughts and prayers.
I lost my aunt to ALS in 2003. Thank you for being her and so many others' voices in expressing the need for money to research and cure this disease.
I will continue to read your story and be thinking of you as you face this challenge.

Amy Disch

Posted by Leo Greene at 3:38 PM | Permalink | Comments (0)