My name is Dave and I have been happily married to my wife, Christine (Chris), for 49 years. We have three beautiful daughters, three wonderful sons-in-law, and seven grandchildren. Just as we were planning to transition into retirement and enjoy our golden years together, Chris was diagnosed with ALS. At that moment I took on a new full-time position, as her caregiver.
Before ALS, we knew very little about the disease and what to expect. I thought I was going to have to do a lot of research on my own and figure things out, but then we found our local ALS clinic and were connected to The ALS Association Western Pennsylvania Chapter. It was then that we realized that there are great people out there that want to help.
When Marie from the Chapter, found out my wife had Bulbar onset ALS, she encouraged us to do voice banking. We are now grateful that we have Chris’s voice on her speech device. When Chris transitioned to a wheelchair, which was provided to us through the Chapter’s Equipment Loan Program, we weren’t sure how we were going to get anywhere because we did not have a wheelchair accessible vehicle. The Chapter stepped in and connected us with free transportation to our medical visits. And when Chris was starting to have trouble swallowing, our care team suggested a feeding tube and a cough assist machine. This proactive care saved her life and has allowed her to be home with me and not in a care facility.
I was also invited to attend a course offered by the Chapter called Powerful Tools for Caregivers. This 6-week program helped me understand what was ahead of us and gave me the tools to be a better caregiver. I have since fully immersed myself into my wife’s care and some of our doctors even call me, Dr. Dave now.
With Chris’s bulbar onset ALS, her voice was beginning to weaken. We learned about the paperless tablet at the class and got one from the Chapter right away. This was a life saver. We were able to communicate with each other again.
“We were not as far into our journey as others in the class were, but I was given tools to help prepare myself mentally for the big changes we had ahead of us.”
We have been very fortunate with the care that we have received. It has allowed my wife to stay safely at home with our family and enjoy our time together.
The ALS Association Western Pennsylvania Chapter offers a full range of services to guide and assist those living with ALS and their families. The pages within the Patient & Family Services section of their website offer a wide range of information for patients, caregivers, family members, friends, and healthcare workers. To register with the Chapter for services, support, and to ensure you receive updates on our educational programs, please call Marie Folino at 412-821-3254 or 1-800-967-9296, or click here fill out the Chapter registration survey online.
If I were asked “Why contribute to ALS?” I would say that a contribution to the ALS Association allows researchers to move forward and find a cure for this insidious disease, and help fund our local association that does so much to support families living with ALS.