Guest Post: ‘It Takes A Village’

By Patti O’Reilly

I was diagnosed with ALS in January 2014, at the age of 53.

I was an oncology nurse for 32 years and had just completed my master’s degree in nursing and passed the boards to become a nurse practitioner when I was diagnosed. Being a nurse practitioner had always been a dream of mine, but I was unable to use my master’s degree at all because of ALS.

Patricia O-Reilly3

My husband of 35 years is my primary caregiver. He’s very patient. It’s been difficult for me to accept help because I was always the one providing care. I also have six sons. The youngest was 15 when I was diagnosed.

ALS disrupts the entire circle of life. Every aspect of life is changed. I can’t be the mother, wife, nurse, daughter, sister, and friend I once was. And yet, I’m still here and still hopeful.

I’ve always said, “It takes a village.” I’m fortunate to have a strong village of family, friends, and faith community. That village of support has now been expanded to include all of those in the ALS community, including The ALS Association and fellow patients.

Me with five of my six sons at a Walk to Defeat ALS event
Team O'Reilly-Patti O'Reilly
Team O’Reilly at a Walk to Defeat ALS event

The ALS Association Northern Ohio Chapter has provided much assistance in the form of equipment and reimbursement for services.

You are a part of my village, too, you know. Your support provides people living with ALS and families like mine with the local support services and care needed to face this terrible disease.

Please donate to The ALS Association to help give hope to people living with ALS. Your donation will make a real impact!

5 thoughts on “Guest Post: ‘It Takes A Village’”

  1. I was diagnosed in 2016. I had been choking all during 2015 but no one could tell me why. I was diagnosed at the Wake Forest ALS Center by Dr James Caress. I live alone and have always taken care of myself But I had a bad fall yesterday and it required stitches over my eye. That was the fifth time in two months that I have fallen. I use my walker faithfully after my Las two falls which occurred in the same day. It is hard to accept that I am losing my independence. But I know that day is coming sooner than later. Please give to ALS Research. It is an awful disease that robs us of everything.


  2. Your optimsm inspired me a lot! My dad was a ALS patient. Today is his birthday and I will share your encouraging story with him. And thank you very much for your moving and touching words! Have a good holiday!


  3. I have been donating regularly since my oldest son Jeff was diagnosed this past May-He is age 59 and of course in my opinion THE BEST!! As you must feel about your sons-
    god Bless you and your family.. we must never give up HOPE!!!
    we all must make a try at living only one day at a time!!


  4. I am 49 years old and was just diagnosed with bulbar ALS on Nov 14 2018 my symptoms started in October 2017 I was at work as a customer service representative and I noticed my voice was getting raspy. I didn’t think anything of it at the time then the swallowing issue started where anything I ate I choked. Then my husband ( who is now deceased) started to tell me that he could not hear me. Even at work one of my calls was recorded and my voice did not sound correct. I went to my primary doctor I have had 2 MRIs and the barrium swallow. I was referred to a neurologist who thought I had als and was referred for a second opinion and that 2nd opinion did confirm my diagnosis. Since then I have been able to work by doing chats and emails. But recently my left hand is getting worse so I am at The point I may have to stop working. I have the peg tube now and my family has been so support and so has the ALS chapter of Oklahoma. I would have never thought this would happen to me I never got sick. I have embraced this journey with the courage and strength that I have.


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