The O’Briens: One Family’s Journey Living With ALS

O'Briens

The ALS Association has served more than 20,000 people with ALS and their families this year, and that number continues to grow. Many of these families want to help spread awareness of the disease and share their stories with the community – share the many faces of people living with ALS, the caregivers, friends, and family members fighting every day. Although there may be some commonalities at times, no two stories are ever the same. They are all, however, inspiring stories of love, support, perseverance, and hope.

We recently spoke with Hugh O’Brien – husband, father, grandfather, and a person living with ALS. Hugh and his family live in Pennsylvania and have been very involved with The ALS Association Western Pennsylvania Chapter. Here is what Hugh had to say about his journey with ALS in his own words.

Tell us a little about yourself and your family. 
My name is Hubert (Hugh) O’Brien, Jr. I am 67 years old from Hermitage, PA. I am married to Annette St. John O’Brien. We have three children, Natalie, Kimberly and Ian, and son-in-law, Scot. We also have three grandchildren, Alexander, Liam and Rory. I come from a family of 9 children, I am the middle child. I grew up in a neighboring city, Farrell PA. I went to parochial schools all the way through high school. I furthered my education at Robert Morris University in Pittsburgh. I graduated in 1975 with a BSBA specialized in Accounting and I was a Certified Public Accountant.

My first job was with a big eight accounting firm now called Deloitte. From there I worked in corporate accounting for the next 40 years with four companies in various industries. I am a member of the AICPA and the PICPA and served on the finance committee at my church. My hobbies were hunting, fishing, golf and I enjoyed working in the yard and around the house.

When were you diagnosed with ALS?
I was diagnosed with ALS in March 2018 at the Cleveland Clinic. After that diagnosis, we went for a second opinion to Allegheny General Hospital in Pittsburgh where my condition was confirmed by Dr. Sandeep Rana.

How have your friends and family supported you through your journey with ALS?
My family and friends have been extremely supportive to me throughout my battle with ALS. My primary caregiver is my wife, Annette, who does more than I could ever ask for. Also, my children, grandchildren and siblings have been by my side from day one helping me live with this illness. 

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What methods have you used to stay positive?
The methods I have used to stay positive include prayer, friendship and laughter. I like to attend church whenever I can. Being mostly sedentary now, I enjoy watching past episodes of Gunsmoke and Andy Griffith. They make me laugh, and sometimes my brothers watch with me and we talk about the old days!

What are some of the ways COVID-19 has affected you and your family, particularly in how you live your life as a person with ALS?
A sad thing for me during the pandemic was fewer family and friends’ visits. There were a few months at the beginning that my own children did not come into my home. Due to COVID-19 there was no Pittsburgh Walk to Defeat ALS® at Point State Park which we participated in last year. I was honored to be asked to cut the ribbon to start the walk!

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The great Western Pennsylvania Chapter of The ALS Association encouraged teams this year to host their own “mini” walks in their neighborhoods. So, our team, called Hugh’s Crew “Walking for Extra Innings,” had a walk in Buhl Park, which is across the street from my home. We rented a shelter and had staggered walks throughout the day keeping the groups small in accordance with state regulations during COVID-19. With the Walk Kit we were provided, I cut the ribbon and my family decorated the shelter. We were blessed to have 58 family and friends walk with us this year.

What do you wish people would understand about this disease?
What I would like people to understand about this disease is there is no cure YET and nowadays most people only live 3-5 years after being diagnosed with ALS. It is a progressive illness. One day you could be talking and eating on your own and the next day you may have lost those abilities. I am thankfully still talking, eating, and breathing on my own but it has affected my mobility. I cannot walk anymore, and my hands are deteriorating. My fingers are curling and cannot do the intricate things I used to be able to do.

What has been your experience with The ALS Association? 
I am assisted by The ALS Association Western Pennsylvania Chapter. It is the most fantastic organization. The people who work there are a Godsend to me and my family. They all go above and beyond the call of duty to make sure I have everything I need or want. I have received multiple devices from their Loan Closet to help me in ever day life. For instance, a stair lift, ramp, sit-to-stand, and power chair to just name a few. There are many more, far too numerous to mention here.

What would you tell someone who is thinking about donating to or volunteering with The ALS Association?
I would tell people who are thinking about donating or volunteering with The ALS Association that it would be time or money well spent. It is a highly rewarding thing you could do for yourself and others.  In 2015, my wife and I participated in the Ice Bucket Challenge. Unbeknownst to me I would shortly thereafter be diagnosed with ALS myself. Another activity my family and I have been involved with is the Walk to Defeat ALS® the last two years.   

What is your personal mantra or guiding principle? Is there a quote, song lyric, etc. that really speaks to you?
My guiding principle is the Golden Rule, which is to treat others as you would want to be treated. Be kind to others and it will be returned to you tenfold. 

An abiding prayer for me is the Serenity Prayer, “God grant me the Serenity, to accept the things I cannot change, the Courage to change the things I can, and the Wisdom to know the difference.”

Special thanks to Hugh O’Brien for sharing his personal and heartfelt story of his journey with ALS. If you would like to share the story of your experience with ALS, please contact us at [email protected].

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