I shared with Sam about this family project and they were enchanted.  Soon, it became part of our routine.  At the start of our meetings, I’d provide a quick update on the garden’s progress and let Sam see garden photographs by sharing my screen.  Sam was delighted.  In fact, when I forgot to take new pictures before a meeting, Sam let me know that this should not happen again.  

​After a few minutes of garden talk, we’d transition to "the work” of our time together where Sam shared struggles, practiced coping skills, and processed their concerns.  And then to close our meetings, Sam would make suggestions about vegetable varieties to consider, strategies for dealing with garden pests, or flowers they thought would make a nice addition to our efforts.  Through the common language of gardening, a connection was made.     
Sam’s hands never touched the soil of our quarantine garden but their fingerprints were all over our bountiful harvest.      ​

By Pam VanVliet

The word support can mean many different things to pALS and caregivers living with ALS.  From an equipment stand point, support means adaptive equipment that can help pALS move and live well with ALS.  For example, when walking becomes challenging, a walker or power wheelchair.  In the bathroom a sliding shower bench, hand grips and automatic soap dispenser for safely bathing, and a raised toilet seat with handles.  As eating & drinking starts to become challenging, adaptive untensils and cups.  It can also be helpful to change door handles from turn to lever.

Support also comes from family, friends and volunteers!  Being aware of the needs of the family, walking the dog, yard work, house work, meals.  For a caregiver the question “what can I do for you” can be overwhelming.  Instead, look at what the caregiver needs and offer to help with that.

Support also comes from our community, recently a Schwan’s truck pulled up in front of my driveway.  The man walked up with a bag of food and I told him I did not order anything.  He asked if I was the ALS lady, and I said yes.  He said he just wanted to help with food for our families and this was a personal donation from him. 

What does support look like to you?

by Emily Brechting, Ph.D.
Clinical Support Psychologist, Susan Mast ALS Foundation

I’m a Chairbearer. That is, Bearer of the Chair. Not sure about this term? Read on.

Recently I visited my brother Dirk in the Bone Marrow Transplant unit. It had been about two weeks since he was hospitalized with Influenza A (make that two strains to make things extra interesting) and pneumonia. He began receiving much-needed care to help him tackle these “ordinary” illnesses but his recovery from these stalled. A large pulmonary embolism was discovered that was impacting function in both lungs and emergency steps were taken to break up this clot. What followed was a complicated balancing act of blood thinners to eradicate the remnants of that clot and a concerning inability to control bleeding from several wounds including his incision site. The past few days have shown progress and provided some much-needed encouragement.

His bleeding is mostly under control. He continues to recover from the influenza, pneumonia, and procedure. But these have taken their toll. He is weak. And weary. The day before my visit, his physical therapist arrived to begin the process of bolstering his strength and assessing readiness to be discharged sometime in the not-so-distant future. He moved around a bit in his room for therapy and then was exhausted for much of the day. During my visit, his PT wanted to see if he could climb a step or two and try to walk for a bit. He was willing to try, though in reality he looked like he wanted to be left alone to stay in bed.

Sidebar: I could write a litany of posts about my brother’s tenacity, drive, ability to tolerate pain, and incomparable willingness to push himself. He is incredible.
Now he was vertical. Leaning on his IV pole for stability, he headed toward the door of his room. His PT turned to me, handed me a folding chair, and asked me to carry it. She wanted him to have a place to rest when the journey became too taxing. “The chairbearer!” I exclaimed. He and I bantered about his status and high position at having a chairbearer follow him around. What’s next? A cupbearer?

All joking aside, I was struck by the profoundness of bearing the chair as I walked behind him. It resonates with me that being a chairbearer is at the very core of community (whether with family or friends) and central to my professional life. We join the journey of those we love; it is an honor and privilege to carve out space for our dear ones to pause, rest, and recuperate when they are weary. When working with someone professionally, my goals are essentially the same. Friends, let’s look at this for the honor that is. Sure, the chair might be bulky and a bit awkward sometimes. Perhaps you prefer a quicker pace. But let’s embrace this chair-bearing role and serve each other well.

By the way, he didn’t need the chair. He made an entire lap around the unit and flopped back into bed. Exhausted. Satisfied. Encouraged.