As My ALS Journey and Family Expands!

45331_497041290316553_1447516597_nALS entered my life in 1995 when my young husband, Kevin O’Donnell, received his diagnosis.  He was only 30 years old and it would be difficult to put into words how that day and diagnosis impacted us for six years, and me for nearly two decades now. I have written extensively about my years with Kevin, as they have shaped my entire life. For his love and companionship, I am truly inspired and grateful.

Since that day of Kevin’s diagnosis in May of 1995, I have been on an ALS (Amyotrophic Lateral Sclerosis) journey.

My journey started as I embraced Kevin while we received the devastating news which was incompressible; I heard every other word.  Neurological.  Terminal.  Live.  Percentage. Hope.

When Kevin lost his battle with ALS in 2001, I lost a huge part of me.  It took me YEARS to accept that he was gone and to understand that having him as my husband for only nine years was better than NEVER having him at all.   He was brave, funny, loving and kind.  I find myself now, after some of that pain has subsided, understanding that I would not have changed my role as wife, caregiver and advocate, even had I known what would ensue, for anything.  It was the greatest role of my life and one for which I am proud.

Today, I live each day in Kevin’s memory – charged with continuing his battle in the fight against ALS and in the hopes of helping new families currently faced with this horrific disease and the enormity of that challenge.

In October 2011, my daughter Alina and I met with the ALS Hope Foundation in Philadelphia to share my non-profit, Hope Loves Company, with them.  HLC was formed to provide emotional and educational support to children of ALS patients.  We had a great meeting which ended in this suggestion: “You should go to the International MND/ALS meeting in Chicago in December, 2012.  Share HLC with others.”

Food for thought. I filed that information mentally.

Since then, with the help of my HLC Board, we have reached out to ALS families all over the United States- offering them our love and support. We have sent free copies of the children’s book, What Did You Learn Today?  to families in Connecticut, Pennsylvania, Texas, Washington, Alabama, Tennessee and more.

To read about how the children’s book WDYLT? as well as Nora, Adam and Warren Ames came to bless my life, go to the HLC website and read about yet another incredible journey.

HLC had its first Kid’s Day in June 2012 for ALS children and their families. I was overjoyed to see the positive response from families, volunteers and Waterloo Gardens, all of whom generously embraced the day and HLC.  Waterloo Gardens in Exton, PA even donated their grounds for Kid’s Day!

Over the summer, HLC received its first large donation from Steve and Michel Gleason, of Team Gleason- a generous welcome and congrats that officially tagged us as a non-profit organization with big shoes to fill.  Steve reminds me of Kevin, living bravely with ALS and making an impact every day from his wheelchair; accomplishing much more than most of us who are not challenged by a neurological disease.

In October, I was reminded that the National Alliance meeting in Chicago was just around the corner.  I called in my troops.  My dedicated sister-in-law Keiren updated the website and brochure.  My dear friend Linda helped with contacts and preparations.

My friend Margaret picked out just the right clothes from my wardrobe.

Riverton Health and Fitness Center and their monthly donations to HLC gave me hope for the camp that I was about to reveal to a very large audience.

My incredible intern Emily created my presentation, one that took us a few visits to perfect.

I lived for weeks, at my computer, in my pajamas, with one goal:  share HLC with the ALS community and share it well! There were days when I began my work at 6 am and realized by 3 pm, that I had not had breakfast!

On December 1st, in the midst of Christmas gifts and decoration, I parked my suitcase. My husband Warren loaded our car and drove me to the airport. Best of all, our three amazing children wished me luck and said I would do great.  Wow.

The ALS Hope Foundation generously sponsored my trip to the conference and gave me the opportunity to present HLC.

Without my generous team, I would have been back in New Jersey still working, when my plane left for Chicago.

Alone, with the spirit of my team in my heart, I headed to Chicago, slightly apprehensive yet passionate about sharing HLC with the world.

Day 1- I sat in a room of 80 attendees- a menagerie of patients, caregivers, advocates, scientists, doctors, etc… and felt smaller than my already small stature.

My mind wandered.

Will HLC be embraced?

Will others rally behind my cause?

Will my presentation go smoothly?

Will this experience move me forward in my work as an ALS advocate, for ALS families in any way or in many ways?  I had no sleep the night before, due to these concerns.

As I looked around the conference room, I sat in awe.  Diverse cultures.  Diverse appearances.  Diverse languages.  Conversations were taking place in many languages foreign to me.

How can we unite our efforts when we don’t share a common language?

The first few speakers presented.  Ten powerful minutes each.  Stem cell hope from Israel.  Raising funds suggestions from Australia.  ALS forums and their place in the U.S.

I sat stunned.  Quiet.  Attentive.  I nodded in agreement with everything that was being said. Wanted to shout a huge, “Amen!” but avoided the temptation and the opportunity to embarrass myself.

It quickly became clear to me that we did all share a common language at the International MND/ALS Alliance- ALS. We united in the face of ALS and our determination to help make a difference to patients and their families.

Day 2 – It was my chance to present Hope Loves Company.  My leg was wiggling back and forth.  I began to shiver, yet, I stood and presented HLC and my journey to a room full of reflective strangers.  When the HLC  video ended , I could hear the shuffling of purses, in search of tissues.  As I left the stage, I was greeted by smiles of approval.

For most of my life as an ALS advocate, I have been alone.  Kevin’s picture was the impetus for motivating my work.  Then I met my husband Warren, his children Nora and Adam and placed a picture of their mother, Tina, next to Kevin’s. Over the last eleven years, I have added hundreds of pictures (in my heart) to that line of heroes gone too soon.  But most of my work is done in isolation, just me and the computer and an email address of someone who needs more information, a place to vent, a reason for hope.

Following my presentation, several people came up to me for bear hugs.  One man who spoke no English kissed my hand again and again.  I have never felt less alone in my ALS journey.

The culmination of Day 2 of the conference ended with a Warm and Fuzzy dinner, as it was aptly named ten years ago.

After a chocolate themed dessert, each of us had the chance to stand and say something.  I couldn’t resist.

“This day reminds me of John Heywood’s quote, ‘Nothing is impossible to a willing heart’.”

There, I had learned that in Latvia, Russia people wait six years for wheelchairs.

I had cried with a woman from Taiwan whose young husband lives with ALS.

I had exchanged ideas with a woman from France who helps ALS families.

My willing heart will bring me back to the National MND/ALS Alliance conference next year and I will feel right at home as my ALS journey and family expands. 


Author: joames

Writer, massage therapist, personal trainer, advocate

9 thoughts on “As My ALS Journey and Family Expands!”

  1. You have really touched my heart in the right place as I read your story. My husband has ALS (4 yrs) and our children are grown, However, our grandchildren( 7 & 5) are so involved with helping care for the grandpa and love to help. They are why he gets up and fights everyday. Children need to be a focus also and how they are affected and how to help them deal with their feelings . Thank you for your great works.
    Thank you for sharing
    Love in the USA

  2. Hi,you have also brought tears to me my boyfriend has just been diagnosed with als,and your story inspires me..the part that speaks of since the day of the diagnoses I also have been on an als journey,I found that I wasnt alone. I spend very many hours trying to do research..and getting Derek all he needs like handicapped accessable housing doctors appointments and am ready to take on this horrific fight with Derek I understand the decease process but we are not going to try to look to far into it and just accept each day that God allows us to have togethere but will be prepared for what is to come,altho I do feel scared and lonely sad for him and myself find myself in and out of crying spells then feeling strong different times.I try to give him a positive outlook, but I can see how sad he looks basicly we just need to speak with and or be around others who are going thru the same thing…thanks for all you have done you made a difference in my life today.

    1. Dear Angela,

      You are so brave! Your boyfriend is so lucky to have you! So glad that my writing helped you in some way. Feel free to reach out at my email- and check out the website at The video is I have a free camp in May for children who have a parent or grandparent living with ALS if you know of anyone…. hugs to you. Strength and love! You are doing the best you can and it’s a very difficult task to watch someone you love with ALS! Hang in there and reach out for support!


  3. Hi this is a very touching story. My fiancee Randy who is 65 was diagnoised with ALS in january 2012 and he now on a ventilator feeding tube trek crathter he ended up with blood clots in the lungs. I thank God everyday for every minute with Randy. I hope a cure is found one day my self. This is a horrific disease and I feel for anyone who has it and the families that are invovlved. It is very emotional. Thank God he gave me two wonderful guardian angels as children. My 2 boys Matt 24 and Josh 20 are Randy’primary care givers. They take good care of Randy. God is good and there will be a cure one day for the horrible disease. I have faith and hope. God Bless everyone dealing with this it is probably the hardest thing I have ever done. I would not have it any other way. Randy was once my Guardian Angel when we met in Nov 2005. Now me and my boys and my daughter can be his angels. We would not have it any other way. God Bless everyone. Keep Praying and remember God is Good.

      1. Thank you God is my stremgth and my refuge. Praying for a miraculous miracle nothing is to big for God what doctors cant do God can. Believing he will restore Randy’s health. Be blessed.

  4. Hello, I am sorry about your fight with ALS. I am a son of a person with ALS. I wanted to do something about ALS for him and for others like him. However, I need help, and I want to make sure that others like my father are interested in this project.
    Please visit and feel free to provide feedback.
    Thank you.

    1. Thank you Mike for all you do for your father and ALS. I do not have ALS but lost my husband to ALS and began a foundation to support children and young adults who have family members living with ALS. It’s Where do you live? I loved your website and thank you for reaching out Mike! Jodi

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