Al Freedman, PhD, a psychologist who specializes in rare disease communities, discusses how to manage social isolation while living with amyotrophic lateral sclerosis (ALS). He shares his background as a father to his late son Jack, who had spinal muscular atrophy (SMA), and how his role as a caregiver has helped him advise and empathize with other caregivers and patients.
Transcript
Hi, my name is Dr. Al Freedman. I’m a practicing psychologist, and I specialize in supporting the needs of patients and families affected by rare disease. I’m also a dad. My son Jack lived to the age of 26 with a rare disease called spinal muscular atrophy, or SMA, and I was very lucky to be Jack’s dad for 26 years.
So it’s both a combination of my personal and professional experiences that I bring to the conversation with you today. Isolation is a very common concern amongst patients with ALS and with many, many rare diseases in our country and around the world. And it’s especially challenging when you have a rare disease like ALS, because your day to day life is different than everybody else’s.
As the symptoms of the condition become more pronounced, you look different, you feel different, and you’re different in just about every way from the average person on the street. So it makes it harder to be connected to people, in part because other people who aren’t as comfortable and familiar with rare disease as we are don’t know what to do. And when people don’t know what to do when you have a disability, they sometimes move away from you rather than towards you.
For ALS patients, I would encourage reaching out to people who care about you. Friends and family who you love and who love you and care about you — and explain what you need.
Explain your situation and how they can help you. Sometimes people need to be given permission or direction about how to help, and there may be other ways that your friends and family can help, but they may not know and they don’t want to guess wrong.
So my first tip is: tell them. Be respectful. Be clear and be grateful for the relationships that you have and the friendships and family that you have.
The second tip I would offer would be: community is everything. And when you’re diagnosed with a rare disease that’s as scary as SMA or ALS, you feel very much isolated.
I felt like we were blasted off into some Twilight Zone where nobody else was and nobody could understand what it felt like. And when we met other people who had also been blasted off into the Twilight Zone, I felt more supported and safe and understood.
And all these years later, even without my son, our community of SMA families is like another family to me — because they get me, they get us, they’re us. And there is an ALS community that is strong, established, and people want to help each other — who’ve been there, done that, and want to help each other. It helps you feel less isolated.
So making new friends is a different kind of challenge, and it is a challenge compared to sustaining and maintaining the relationships that you already have with family and friends who know and love you before your diagnosis and the rare disease community.
ALS community in this case that you’re a part of. I would encourage everybody with ALS to continue to pursue their work as long as they can, and to pursue your interests and hobbies.
You are not ALS. You are a person who has ALS, and you have a lot of knowledge. You have a lot of experience. You have a lot of interests.
And in pursuing your interests and your work and expanding your knowledge, you will hopefully cross paths with other people who have similar interests and take an interest in you and what you know about and what you’re interested in.
And as you adapt to the needs of ALS, I can tell you that others were very interested and drawn to my son Jack, in part because he was different with SMA. The world is a difficult place, as you know, for people with disabilities and limitations, but there are open-hearted, compassionate people who will make a choice to get to know you because of what you have to offer outside of the condition you have — but also would want to help and be supportive.
I hope that’s a helpful, quick perspective on fighting isolation and staying connected and being open to new relationships.