Going Beyond ALS – A Loving Journey

ALS Ice Bucket Challenge

From the time José Cofiño asked me to be the first guest blogger on BeyondALS, I've been trying to decide what to write on…so many choices!  The obvious one would be the Ice Bucket Challenge and my thoughts on how much awareness and money has been raised in the last three weeks. I really haven't been able to find the words to express my absolute amazement on how the lowly ice cube has become the best friend in the battle against ALS. I can say this about that: RESEARCH! And a huge hug of thanks to superstars Pete Frates and Pat Quinn for starting the whole thing.

Other thoughts that I could share would be what it means to hear the ALS diagnosis. (First gut reaction: wanting to vomit); How do you tell your kids? (I'm still mad at Pat for that one! But that's another story!); How do you live life, knowing what the outcome will be. (Love as the guide.); What do you need in your arsenal to help you live with ALS? (Friends, family, laughter and an ALS loan closet.); Living with the choice of venting or not venting. (Not venting in our case.). These are for another day, though, if José invites me back!

Patrick Ford Dwyer - My Dear Pat

As I sit here thinking about what I want to write, however, the only thing that keeps popping into my head is my handsome husband, Pat.  I really can't write about life with ALS, or life “Beyond ALS”, without first talking about him.  He really was my inspiration, and my guide, for how I lived with ALS.  

Brenna, Sean, Pat & Jenny Dwyer

Pat and I met in 1985, on a boat in Alaska.  He was the engineer, and I was the cook.  To say we had a really great summer that year is an understatement!  We fell in love on the SouthEast waters of Alaska, among the salmon.  We started our commercial fishing business in 1986, and were married in 1987.  1989 and 1992 brought two events that changed our lives in many ways: the birth of our daughter, Brenna, and the birth of our son, Sean.  They became the loves of our life. Throughout the years, we raised our family, built a business and dealt with life's challenges as they arose.

In June 2005, Pat was diagnosed with ALS.  We left the doctor's office in stunned silence.  It was good to have a confirmation about what was happening to Pat, but damn: It was ALS.

We were luckier than most in two ways: we had gotten a swift diagnosis, and the disease was progressing slowly.  One of the stunning things about ALS, among many, is that, often, people go misdiagnosed for a long time.  There is no test for ALS.  It is confirmed by ruling everything else out.  Trust me, you are hoping for a diagnosis of Lyme disease, or lead poisoning, or maybe some kind of cancer.  At least, then, you have drugs and a fighting chance.

Jameson Whiskey through a Feeding Tube

We lived 8 years with Pat's ALS in our lives, in our minds, in our face, and always heavy on the heart.  But during that time we had many, many good times.  We really just tried to live as normally as we could.  We were also very lucky in that our family, our friends, our neighborhood, doctors, nurses, acquaintances, and even strangers, all rallied around us to help Pat live his ALS. 

Some of the fondest memories of our "days with ALS" were of Pat hanging out with his friends.  They continued to include him in all their plans, made accommodations for him as needed, and learned the fine art of pouring beer, or Jameson Whiskey through his feeding tube!  

I can't even begin to say how grateful I was for those "boys’ nights."  One thing I know for sure in life is that married people are not supposed to be together 24/7.  Working together, living together, and one caring for the other…um, well, let's just say some days the tension was a little high!

Fighter In Life – Fighter For Life

Pat enjoyed life.  He loved the game of life.  Even though he knew in some cases he wasn't going to win the negotiation, or the discount on crab pots, he would surely try.  He loved that!  Winning or losing made his blue eyes sparkle with merriment.   (Our children learned well from him in that aspect!)  He was a true people person: loved meeting people, loved talking to them (his cell phone bill was always higher than mine!), and if walls could talk, he would have been friends with them as well.  He loved the people in his life, but his children were his pride and joy.  He loved them more than he could express in words.

Pat was a problem solver.  He could, literally, fix anything.  He was so very smart.  The boat crews would call him from the middle of the Bering Sea, with a question at three AM and, though Pat hadn't been on the boats for years because of his ALS, he could still remember every engine room detail and direct the engineer right to the problem and walk him through on how to fix it.

St George Marine: Brenna A & Jennifer A

ALS was the one thing he could not fix. He hated living with it.  It went against everything he was.  He was a "fix it right the first time" guy.  That is not how the ALS world operates. The frustration of wheelchairs breaking down, eye gaze systems that wouldn't calibrate, and his failing body all made him crazy.  

Living with ALS is not for Wimps

Honestly, there were some days he handled his ALS better than I did, better than most of us in his life.  He lived with such courage, kindness, grace and love.  He was patient and kind.  He was always encouraging me, even on the days when I yelled. Now, don't get me wrong, there were many days, when he was grumpy, frustrated, shouting, and, yes, crying.  But the amazing thing was, in spite of his ALS, he was stronger than ever.  You cannot be a wimp and live with ALS.  Pat was truly the strong one every day of his disease.  I was just following his lead.

“A labor of love" doesn't even come close to how much my love for Pat guided me through the ALS. I told him from the very beginning that I would take care of him as best and for as long as I could, and until he wanted me to stop.

On June 4th, 2013, at 4:14 pm, Pat decided he was done with his ALS, and gave it the final "F you!” as he sailed to the heavens on a beautiful sunny Seattle day.  That act, that courageous act, is now my guide as I live life beyond Pat's ALS.  

Together, We Will Beat ALS

I know there are many, many people who are diagnosed with ALS, that don't have the support systems we had.  So, for me, my way to move Beyond ALS, is to work as best I can, for as long as I can, to find a treatment, or 20; To make a difference against this disease, in Pat's honor, so other families won't have to live with ALS. 

 As I do this work, I continue to meet amazing people who live with ALS, people like José and Ben Trust.  Their friendship, and all my ALS friendships, confirms my focus on finding that treatment, or 20.  I firmly believe it will happen.  All of us, working together and teaming up with the ALS-Therapy Development Institute (ALS-TDI), will absolutely move us Beyond ALS.

Jenny Gore Dwyercontinues to own St. George Marine, the family-run company she established with Pat. She serves on the board of ALS-TDI. Jenny worked extensively behind the scenes in Washington, D.C. to ensure passage of the ALS Registry, which was signed into law by President George W. Bush in 2008, and has met with ranking members of both the U.S. House and Senate to bring attention to the need for increased federal support for ALS translational drug research. She works tirelessly to find treatments for ALS. She misses Pat.