Recently, Her ALS Story and the Young Faces of ALS presented a series of online Town Halls discussing Relationships and ALS. With three major topics covering friendship, family, and intimacy, each Town Hall was led by people with ALS and featured an intimate and inspiring group discussion. Below, we have summarized some of these conversations to share the tips and feedback that were offered by our speakers and participants. Please note that all the advice shared here is based on personal experiences and should not be taken as medical advice.
Friendship and ALS
One of the most common comments we hear is how hard it is to maintain friendships once someone is diagnosed with ALS. For this event, participants joined us to hear stories of friends who are making the best of a bad situation, including examples of how to support a friend with ALS, and how people with ALS can continue to engage with their friends!
For this discussion, we were joined by hosts Sam Telgkamp, Asia Jami, and Jess Story. Many themes arose from the discussion, including how many friends of people diagnosed with ALS want to do more, but don’t know how to help. Some ideas of how to help included:
- Offering to visit, or do something like you used to do, even if it must be a little bit different. Going to get nails done, joining for a kid’s soccer game, driving to an appointment. Showing up is what is most important!
- Changing communication styles. As ALS can affect communication, staying in touch with memes, texts, or social media, is an extremely easy way to stay in contact with friends living with ALS.
- Having a sense of humor. Whether your humor style is witty snaps, or raunchy dark humor, maintaining a sense of humor post-diagnosis was what many folks recommend as they feel it helps them address some of the topics that would otherwise be awkward to discuss without it.
Another important, although sad, topic discussed, was how folks dealt with people feeling abandoned by their friends. Not all friends will stay around after an ALS diagnosis, and that is something the group got to talk about – learning that these experiences of friendships fading were a common experience.
“I learned that my village doesn’t always know what to say or do but they are committed to showing up for me ❤️.”-Asia
“ALS has taught me the value of time and relationships. With less time spent worrying about the little things, I have been able to focus more on deepening my friendships and conversations with others. And more importantly, I've learned that when this comes off intimidating and pushes others away that is their loss, not mine.” -Sam
Family and ALS
Although family dynamics are always different, one common factor is the desire to support each other through the good and bad times. For this event, we facilitated a discussion on Family and ALS from many different perspectives – from living with ALS, caregiving for a family member with ALS, family planning and ALS, and being a parent with ALS.
We were joined by hosts Brooke Eby, and her sister Sarah, and Sunny Brous with her mom, Laurie. One topic we covered quite a bit was the use of the whole family network. For example, giving primary caregivers a break when at larger family gatherings, as you can be surrounded by others who can help with essential tasks, like grabbing your beer for you or helping you get around the function.
Another topic that came up was the changes in dynamic when it comes to having to do things like help a family member with an ALS shower. While participants shared that this can initially feel uncomfortable, they also suggested using humor to cope and creating an open dialogue to talk about who you are most comfortable getting help from for these specific situations.
One thing from this discussion Brooke wants people to take away is to “plan for the future, live in the moment.”
"I appreciate inclusion and find that friends are often the first to pull away, but family remains constant. Family always includes me in celebrations or accommodates my needs in order for me to participate." - Sunny
Intimacy and ALS
From dating and relationships to sexuality and your sex life, ALS changes a lot. This special 1.5-hour-long ALS Town Hall attempted to cover the many ways that intimacy can be affected by ALS.
For our discussion on Intimacy and ALS, we were joined by speakers, Nate Methot, Alex Cavaliere and her husband, Joe, and Meg Niemeyer.
Nate discussed his experience dating and how although it was scary at first, ultimately, he realized that everyone on the apps he was seeing were just people. He emphasized that we all put our best foot forward when dating and encouraged others not to be intimidated by the process. As we know, it is basically a numbers game until you find “the one.”
“If you're single when you get hit by the ALS train, don't curl up in a ball by yourself (like I did). Try to put your fears aside and meet people, because (as we all know) the longer you delay, the harder it will be. And even when it seems hopeless, trying is better than not trying.” - Nate
Alex and Joe discussed emotional intimacy and how the key to staying connected in their marriage is communication – talking about needs and feelings constantly and not falling into a trap of mind-reading for the other or assuming they might be thinking a certain way.
“Don’t give up. Intimacy takes more work when you have ALS but it will be worth the effort for both you and your partner.” -Alex
Finally, Meg opened the discussion floor to those looking to talk more about sex and ALS. Many people discussed similar experiences they’ve had to adjust to, like feeling sexy even after your partner, who also acts as a caregiver, has helped you use the toilet or shower. Much of this related back to the emotional intimacy portion, as so much of that seemed to be connected to the physical part.
“When it comes to physical intimacy, you have to ignore that voice in your head that reminds you of all the things you used to be able to do and start fresh. Prop yourselves up to lay face-to-face in bed and just make out like a couple of wild teenagers and see where it takes you. Be open, be communicative, be forgiving of each other, be reassuring to each other, keep trying and just have fun” -Meg
Town Halls in the Future
Have a topic you want us to cover or want to talk to any of our speakers about a certain topic more? We would love to connect. You can email firstname.lastname@example.org to talk more!