Sep 24, 2014 at 08:18 PM

ALS SUPPORT GROUPS: Family, Friends, Strangers and You

By Jenny Gore Dwyer

Meet the Gore Girls – The “GGs”

The Gore Girls
Jenny, Eileen VanWyhe, Mary Gore, Karen Murkowski (Front row) Anne Gore, Lisa Murkowski, Mary Judson, Nancy Murkowski, Carol Sturgulewski (Back row)
Ten days ago, I returned home from Palm Springs. It was the 16th (-1) gathering of the “Gore Girls” – my sisters, cousins and aunt – The GG Annual Weekend.  (I'll explain the “-1” in a bit.) The only time of year all the GGs get together.  It's girls only, and while not everyone makes it every time, it's our weekend to relax and enjoy each other's company. We eat, drink, laugh, and discuss many issues of high importance, such as the session that included how painful it would be to have a toenail pulled off, immediately followed by just what is the perfect color of lipstick - as I said, important matters that seldom had anything to do with our husbands. Oh, we've been known to shop, too…just a little. One of our favorite traditions is the Saturday night fashion show. We pass ice cream around, with each using a spoon to eat out of the communal carton. Everyone models their purchases… to the accompanying “OOOOHs”, “AAAAHs” and “WOWs” that sound like a crowd watching fireworks…so great!  

It is the weekend that centers us. It reminds us what's important, and that no matter what is going on in our lives, there are 10 GGs that have each other’s back. It is the weekend that no one ever tries to miss. It is an incredible support group.

Aunt DD – At the Heart of the GGs

Our annual trek to the desert began when my Aunt DD moved there from Tacoma. She had been diagnosed with COPD and emphysema in 1997, and the dry air of Palm Desert made her more comfortable. One day, we all received an email saying she was lonely and we should come visit, as her ability to travel had become more limited.  So we did…many times…en mass!  

Aunt DD
Aunt DD

We so looked forward to seeing and spending time with Aunt DD, as we stayed in her two-bedroom home. With nine of us visiting, there were GGs sleeping everywhere: couches, hide-a-beds, and air-beds. If you were lucky, and snored, you got to sleep in the extra bedroom! Being all smooched together was 3/4 the fun.  Every year, upon waking on the morning after our arrival, and the GGs strewn about the house, Aunt DD would say, "My God, what is this, a flop house?"  We'd all yell back, "yes, it is!"  Ah, traditions!

Pat Dwyer & The “Missed” GG Weekend

So, you are probably wondering how this all ties into ALS, and going Beyond ALS.  That's where the “-1” comes in.  In April 2013, it was time for the GG weekend. My husband Pat's ALS was creeping further into his muscles, and I knew I couldn't leave him.  Being the good guy that he was, he said I should try to go.  I said, thanks, but no thanks. By then, I was barely leaving him - only to go to the grocery store 5 minutes away, let alone a 4-5 day weekend!

Before going to bed one night, I sent an email to the GGs saying that I wasn't going to Palm Springs because I didn't want to leave Pat. I awoke to 23 emails from my GGs. There was a chorus of "if Jen isn't going, well, I'm not going either."   Nothing like starting your morning off in tears.  I was concerned Aunt DD would miss us, but she also chimed in to say she would be fine, and looked forward to the next GG weekend, whenever that would be. The support group had rallied behind me in a very different fashion.

Aunt DD’s reaction was not a surprise, as she and Pat had a special relationship. He was the family’s first son-in-law, and they clicked right away. He loved her, and she him.  When our kids, Brenna and Sean, were little, we would spend spring break with Aunt D.  Pat would fix, move and hook-up everything that needed to be fixed, moved or be hooked-up. Most of all, they would spend hours talking. A younger Aunt DD had served in the Navy, so they shared a connection with the sea…and sea stories!

So, in 2013 there was no GG weekend. Yes, we missed the laughing, eating and drinking. But the thing I knew then more than ever was that, with the GG’s support, I could make it through the tough days. I didn't know until later, after Pat passed away, that they had formed a prayer circle with each setting her phone alarm for 5pm daily. When the alarm went off, all would stop and say a little prayer for Pat and me. That's what I mean about having each other's backs.  

Goodbye Aunt DD – The GGs Come Together Again

Last year, my sister, Mary, suggested that we keep our GG weekend set in April, around Pat's birthday on the 14th, so we could celebrate his life with laughter.  We did that.

Three days later, on April 17th, Aunt DD passed away. She had been diagnosed with cancer, and was set to begin chemo, but her breathing was so compromised by her COPD, she passed away very peacefully, with my Aunt Nancy holding her hand.

So, for this year's GG weekend, we went to Palm Springs in September. Aunt DD would have turned 80 on the 16th, and we choose that day to have a memorial service for her, with her California friends.  It was a wonderful day filled with stories and laughter.  But the weekend was very bittersweet.  The GGs gathered to clean out Aunt DD's house, and get it ready for sale. For me, it was a very poignant and difficult time: cleaning out the life of someone who passed away…again: First Pat, and now, Aunt DD. Some minutes it was too much. It was a hard for us all.  We were all missing two people who were important to us. Together, we made it through. 

ALS Support Springs From Many Sources

As I was going through Aunt DD’s pictures, papers, and mementos, I did much thinking.  What kept coming back to is how blessed our family is.  I was talking with a friend a few weeks ago and she asked me how I do all that I am able to do.  I told her that I honestly didn't know, I just do it.  What I have now come to realize is that, with a support base beneath me, I was able to take care of Pat, and help him live as comfortably as he could. The support base wasn't just the GGs, it was Pat's family, it was our neighborhood, it was our friends and it was strangers.  It was the ALS community: our local ALS chapter, and the ALS TDI scientists working everyday to find treatments. 

Palm Springs Sunset
Sunset from Aunt DD's

You can't “do” ALS alone. I know there are families facing ALS without any support. And I know how lucky I am. My support base now motivates me to continue to advocate and be an ALS activist. Really, it's the least I can do: support others as I have been supported. I have to.  Oh, and one more thing: the GG phone alarms still go off, including mine. At 5pm, today, as with every day, we will be sending prayers, good vibes, and loving thoughts, to all in the ALS community, and asking that a treatment, or 20, is found…tomorrow. Join us.  Together, let’s grow our support base, find a solution and move Beyond ALS


Jenny Gore Dwyer continues to share her thoughts and observations about life with ALS by sharing very personal stories openly and honestly. These stories, “Jenny’s Journeys,” offer us a source of inspiration in moving Beyond ALS. Please help us support ALS research by clicking here.


Posted in Overcoming Adversity.

Oct 17, 2014 Arrow1 Down Reply

just a question, I have a friend who was diagnosed with ALS he's only about 30 years old...where can he get help for housing, is all the money raised doing the bucket challenge only for research? Help me understand! He's homeless right now due to this disease and can't get help from anyone...