Holiday Get-together Ideas to Reduce Stress for Those With ALS

For most people, the holidays are a time of joy and good cheer, and an opportunity to get together with family and friends. But when living with ALS, social gatherings have the potential to add stress to an otherwise happy season.

For anyone like me who has ALS-related dysarthria, the inability to participate in conversations can either highlight our disability, as others strain to understand what we’re saying, or leave us sitting on the sidelines.

I suggest you come prepared to guide the conversation so that everyone can join in. I’ve found an easy way to do this with a roundtable game that uses the power of asking simple questions to let people open up about themselves. Here’s how it works:

The game

Either by yourself or with the help of your caregiver, prepare a short list of open-ended questions to bring along to the event. Then, when your host feels it’s appropriate (such as that moment when there’s an awkward pause in the conversation), invite everyone to join in.

The game will give you the opportunity to rest your voice and listen to your party mates. To get the ball rolling, here are four questions and answers. And to make it even more fun, I’ll answer as both my pre- and post-ALS selves.

The questions

If you could go back in time, what year would you visit? Why?

Pre-ALS, I would have said drop me into Italy in the year 1450, during the Renaissance period, when art, literature, dance, and music flourished. I want to be a witness to it all. Today, my secret wish is to go back to the year 2009. That was the year before my ALS symptoms appeared. I’d love to feel “normal” again.

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If you could do something daring and be assured you would not fail, what would you do?

All my life, I’ve never been comfortable jumping off things, especially if they were high up. So skydiving, high diving, and bungee jumping were “no way!” activities. But now that I have ALS and my physical movement is limited, I might just rethink trying a bungee jump for the thrill of it. Of course, you’d have to convince me I wouldn’t fail. Even so, ah!

Imagine that you are an older adult in an aging body. Where do you see yourself? Who is taking care of you?

I always imagined I would remain healthy and fit well into old age. In fact, I imagined myself leading the exercise classes for the other residents in our nursing home. But I always planned as a realist. Now, after 12 years of living with ALS, I’ve learned the value of home care services and am grateful for the wonderful caregiving my husband provides.

If you were to star in a movie, what would be your ideal role?

Before my ALS diagnosis, I would have said roles played either by American actress and dancer Ginger Rogers or French-American ballet dancer Leslie Caron. I loved everything dance, dance, dance. But living with ALS has taught me the value of finding humor in situations and to laugh, laugh, laugh. Now I see myself in the role of a slapstick comedian, perhaps Lucille Ball or Jenny McCarthy.

Now it’s your turn. I’d love to read your answers to my questions in the comments below. You are invited to use these at your next holiday gathering. And for a little more help before, during, and after your event, read my column, “C.H.A.R.M. Through the Holidays.”

This year, let’s create a season filled with joy and good memories and live well while living with ALS.

Note: ALS News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of ALS News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to ALS.