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
By Gregg Ratliff
I feel my wife Nancy was the hero in our family. I was just the parsley on the side of her dinner plate. According to estimates from the National Alliance for Caregiving, during this past year, 65.7 million Americans (or 29 % of the U.S. adult population involving 31 percent of all U.S. households) served as family caregivers for an ill or disabled relative. I was just one of many. I’m fortunate that God gave me a deep love for Nancy and a strength that went beyond my own capabilities. The person being cared for also plays a major role in the caregiver’s capabilities. Nancy’s personal qualities like her resolve, optimism, strong faith, love of life, love for family and love for people in general made my job easier.
Continue reading Perspectives: ALS and Marriage
When it comes to a disease like ALS, quality of life is challenged on a regular basis as symptoms progress. Receiving treatments and developing a health care plan are important steps with ALS, but doing it alone can be difficult. Having someone help guide those decisions and work with you can make the world of a difference and it’s possible with programs like palliative care. Because palliative care can be hard to navigate, listed is basic information and how it’s different from hospice care.
Continue reading Understanding Palliative Care