ALS is not only a confusing disease for those of us who have it, but it also throws our well-meaning friends into a tizzy. Friends who truly want to show their love and support are stymied as to what to do, how to act or what to bring.
That’s because we’ve been guided by our past experiences with other, more common, ailments. For example, when a friend is home sick with a cold, we bring soup. Or for someone recovering from surgery, we send cards and flowers. If they are in hospice care, then we know it’s time to say our goodbyes.
But announce to the world that you have ALS and most folks are completely baffled about what is expected of them. Heck, at the time, I didn’t even know how to answer their question, “What can I do to help?”
I remember those first few months. I received cards, flowers and, yes, even offers of soup! Don’t get me wrong; all of that certainly was welcome, and the soup was very tasty!
What is the answer?
Over the past few years, there have been studies looking at what contributes to quality of life for ALS patients, as well as what diminishes it. These studies found that feeling hopeful and having positive coping strategies improves overall well-being. What reduced quality of life? Feeling isolated, having little social interaction with others and losing the sense of meaning for one’s life.
If I could go back in time, here’s what I would tell my friends when they asked that famous question, “What can I do to help?”
- Encourage me to keep participating, interacting and socializing with normal activities. Offer to pick me up, walk in with me and sit next to me. Provide the moral support I need at this vulnerable time.
- Brainstorm with me for ways I can remain active in our group of friends while accommodating the changes in my physical abilities and my energy level.
- If I begin to avoid going out or am home-bound, keep me in the loop through emails filled with photos or videos. Keep in contact via FaceTime, Skype or other video-chat channels.
- Try to keep our relationship as normal as possible. Pull me out of dwelling on my illness by sharing funny stories or discussing our common interests and current events.
- I may walk a little slower now, have speech issues, and not eat the same foods as before, but don’t let that prevent me from attending special events and enjoying the company of others.
- And, finally, keep my caregiver (spouse) in mind. If my care is intensifying, offer to run errands, mail a package or pick up a take-out meal. Or maybe give the gift of time by offering to visit with me so he or she can get out and have some “me time” as well.
But all this help is a two-way street, so I promise to:
- Be open to your invitations. I may not feel emotionally up to it initially, but I’ll go along anyway. I know that showing up and being among friends is the best thing to lift my mood and outlook.
- Let you know when I need help and I will accept it when offered.
- Be honest with you about my energy levels. I will discuss it openly and let you know when I need calm and rest, or when I’m able to join in and have fun together.
Let’s be the change. Let’s raise awareness of ALS. Let’s help friends and family learn what they can do to help maintain the quality of our lives.
Because, we CAN thrive with a little help from our friends!
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 Services, and are intended to spark discussion about issues pertaining to ALS.