For the general public, ALS might bring some specific images
to mind. Many might think of grainy black and white newsreel footage of Lou
Gehrig standing in Yankee Stadium. Others might picture the same scene but
replace the actual Gehrig with Gary Cooper from the movie Pride of the Yankees. Still others might picture—and hear—Stephen
Hawking and his computer-generated voice. More recently, Steve Gleason has
become what many think of when they think “this is what ALS looks like.”
But for those living with ALS and those caring for them, the
disease isn’t embodied by a famous person, present or past. ALS looks like a
kitchen reconfigured to allow for a power wheelchair at the table. It sounds
like a ventilator or the hum of other medical devices. It feels like grips on
silverware or textured plastic cups.
As we begin May and ALS Awareness Month, we want to explore
what ALS looks, feels and sounds like for those with ALS and their families. As
these families know, the progression of the disease means near constant change—some
that can be planned for, and some that can’t.
Continue reading This is What ALS Looks Like
Conversations about end-of-life care and advance care planning are difficult in the best of circumstances. For those with ALS and their families, these conversations present their own challenges, and the challenges of these conversation are often unique. It can be hard to think about planning for the future while the present has so many complications of its own. It can also be upsetting to think about declining abilities and the inevitable outcome of the disease. But having these important conversations about the future at a time and place that you decide can provide piece of mind for everyone involved.
Continue reading Having the Conversations None of Us Want to Have
By Gregg Ratliff
Occasionally, Nancy and I would experience a rough emotional week. Most of the time when my dear wife displayed more tears than usual, I did not allow it to influence my own disposition. Some days she was able to communicate with her eyes and some days she was not. I remember one particular December day when she could move her eyes to communicate with me she told me that she was feeling “sad” and “depressed.” Of course, that broke my heart! On days like this I would vary our daily activities in an attempt to avoid the “routine” and pick up her spirits. For example, I would play audio book for her, downloaded some music and read to her more than usual, all of which seemed to help – some. The Christmas season was always Nancy’s favorite season and I suppose her inability to “experience Christmas” by shopping, having a “tea party” with her girlfriends, and just generally participating in the hustle and bustle of her favorite season affected her normally cheerful attitude. Nancy’s “love language” was gift giving.
Continue reading Perspectives: On the True Gifts of Christmas
Being a caregiver to someone with ALS can be rewarding, but it also takes a toll both physically and mentally. As National Family Caregiver Month comes to a close and we enter the holiday season, the year-round efforts of caregivers for people with rare diseases, including ALS, continue on. Families with ALS should know they are not alone in their struggles and sacrifices—so many people across the country are forced to readjust their lives in response to this disease. Here are some statistics that show the impact it can have on caregivers.
Continue reading The Impact of Being a Rare Disease Caregiver
By Gregg Ratliff
I love Thanksgiving! It was always my father’s favorite holiday. He passed away on November 24, 1997. I found it to be somewhat ironic that while he loved Thanksgiving, he had a stroke on Thanksgiving Day and he was buried four years later on Wednesday, the day before Thanksgiving. It just seems like more than a coincidence.
Continue reading Perspectives: A Thankful Thanksgiving
In early 2016, Sean Nolan thought it might be time to amp up his workouts. The 46-year-old was feeling more tired than usual and experiencing some overall weakness. “I didn’t think anything of it,” he says. “I just thought I needed to go to the gym more.”
Months later, after his step daughter Jaylin pointed out some twitching in his arm, Sean noticed that his right hand was noticeably weaker. When he told his primary care physician about his symptoms at a routine physical, the doctor immediately referred him to a neurologist. Alarmed, Sean’s girlfriend of eight years, Nikki, started researching Sean’s symptoms online. Up popped sites describing ALS. “I panicked,” she says. But Sean was not convinced. “Everything I’ve read says that I’m an atypical age. The average age for people with ALS is mid-50’s. I’m ten years younger than that.”
Continue reading Portraits of ALS: Veteran Sean Nolan
Eat and sleep regularly. Take time for yourself. Breathe. This is often the advice caregivers receive. Although these are important it’s sometimes not the most helpful or only scratches the surface of what advice caregivers really need, especially for those who are caring for someone with ALS. Based on what caregivers in our area have experienced, here is a list of advice specifically intended for caring with someone with ALS.
Continue reading Caregiver Advice from Caregivers for People with ALS