My name is Sandi Puka and, unbeknown to us, our ALS journey began about three years ago when my husband Dave started to fall and eventually required help to get back up on his feet. We could never have imagined the life-altering journey we were about to begin.
The doctors attributed his falling to his arthritic knee, and he was scheduled for a knee replacement in April 2023. The one troubling aspect was that he had no pain in the knee, but his legs were weak. The orthopedic doctor also felt this was strange and ordered an EMG and nerve conduction studies. This revealed that his issue stemmed from his back. Instead of a knee replacement, a lumbar laminectomy with fusion was done in March 2023. This resulted in a one-week stay in the hospital and four months not being allowed to do much of anything but walk with a walker. Therapy started in late July 2023 and began with Dave using a walker. Just a few months later, he had to attend therapy in a wheelchair.
In October 2023, Dave was sent to a neurologist and, just one month later, he was diagnosed with ALS, but the physician wanted confirmation from the Penn ALS clinic. The diagnosis was confirmed in January 2024. When you hear that diagnosis, the world stands still, and you feel this is just a bad dream, but you are wide awake.
The life you know is over and a new challenging phase has begun, one you could never have imagined. All of your plans and dreams for tomorrow have been thrown out and you are now on a scary, new journey where the world is ever-changing. Where do we begin? Can we keep up? What should we do and where should we turn? Those are only some of the questions one faces with this diagnosis.
Fortunately, you soon learn that you are not alone. Once we visited the Penn ALS clinic, we were put in touch with ALS United Mid-Atlantic and Kate, our social worker, reached out to us to provide support and resources. We attended a Zoom call for newly diagnosed patients that provided invaluable information. We began attending Kate’s monthly patient support group and I joined Jayne’s monthly caregiver support group. You learn so much from others who are also walking this journey. They are the true experts and a wealth of practical knowledge we all share.
ALS United Mid-Atlantic provided home visits to identify what changes we needed to make and some suggestions on how to implement those changes. Soon Dave was in a power wheelchair and was no longer able to walk or stand so there was no way to take him to the Penn Clinic. ALS United Mid-Atlantic provides that service for us, picking us up in a wheelchair van and taking us to clinic visits. ALS United Mid-Atlantic also provided us with the Hoyer lift we needed for transfers in and out of the wheelchair. After months sleeping in a lift chair, Dave could now sleep in bed. Information provided by our social worker Kate led to one of the most life-improving items, a shower chair from Team Gleason. Prior to receiving this chair, Dave was unable to enter the shower for months.
We needed to add a ramp for Dave to be able to enter and exit our house. ALS United Mid-Atlantic helped put us in touch with a company who could build the ramp we needed for our house. Another thing you quickly learn is that all the modifications needed are very expensive, which is another challenge of this disease.
Being a caregiver is a 24-hour-a-day job and can be exhausting, but I know that if the roles were reversed, Dave would do the same for me. On a daily basis, I help Dave with all transfers and some activities of day-to-day living. He is no longer able to do all the things around the house he used to do so I have taken over these chores as well. Basically, as a caregiver I provide love, support, and assistance to Dave, as well as keeping everything else intact around the house. I never could have imagined doing all the things that are now just part of our daily routine.
Every new phase presents new challenges and sometimes we need to be resourceful. Sometimes that is the hardest part. Thankfully, we can turn to ALS United Mid-Atlantic and our support groups for help.
You learn to be thankful for what you can still do and try to make the best of each day. Dave and I just celebrated our 50th wedding anniversary last October. We weren’t able to go on a grand vacation, but our family gave us a wonderful party and that was a very good day.