John R. Hays

by Noelle Hays

 

We had always said that dad wasn’t a ballerina. From a young age, I always knew that he was a little clumsy.

When dad started falling more and more, we became concerned. At 64, my dad started to develop some health problems but nothing too serious. However, over the next few years, my family and I started to notice a difference in his personality. At times, he would become withdrawn, have bouts of uncontrollable laughter, and would fall more frequently. After several years of numerous doctors and incorrect diagnoses, my father was diagnosed with PSP. Even though the diagnosis was not good, at least we had some direction on how to deal with and manage his disease.

With the diagnosis of PSP, dad was taken off many different medications that were originally prescribed for him. These meds made him disoriented and “out of it” most of the time. As we started to research the disease more, we realized how much everything fit into place. At the same time, our worst fears were met when we realized that dad would be going down a long road with a terrible illness. The part that upset me most was that dad also knew what he was in for.

In the beginning of 2005, when dad’s symptoms worsened, I decided to move in with my parents. As a family of five kids, we were very close knit. I was especially close with my dad and we were always laughing and joking around. Some of my favorite traits about him were the funny and crazy things he’d say to make me laugh. As you know, one of the symptoms of PSP is either uncontrollable crying or laughter; fortunately my dad’s was the latter.

Our family had always been a group of fighters and PSP was something that wouldn’t get us down. As a runner, I’ve participated in many marathons. Both my parents always enjoyed attending such events. They liked figuring out the route and the different points during the race where they could see me running. Since dad had PSP, I decided that I would raise money for CurePSP by participating in the New Jersey Shore Marathon in the spring of 2006. I sent letters about my dad to everyone I knew, and many of them passed on the letters to others that knew either dad or myself. I couldn’t believe it, but we were able to raise over $6,000!

The day of the marathon was great, especially with my family coming out to support me and cheer me on. The best part of the race was on mile 18, when I felt very tired and exhausted. I came around the corner and I saw my mom, with a camera taking pictures. As I ran another 20 feet, I saw my dad sitting on his walker. At this point, his vision was not very good, so I started calling to him. When he heard me, he jumped up from his chair and held up a sign that said, “Go Noelle.” At that point, I realized if my dad could do that, I could finish the race.

During the marathon, I wore a shirt that said, “Ask me about PSP.” A lot of racers asked me questions – they had never heard of PSP so I really felt like I was enlightening a lot people. It made me realize that my dad’s disease was such an unknown illness. Therefore, if I had helped at least one person become more aware of PSP, I felt like I had accomplished something.

In the summer of 2006, my dad had a really bad fall and ended up with a crushed vertebra. After his hospital stay and a long month of rehabilitation, dad ended up spending most of his time in a wheelchair. He used a walker to go out to the car and to the bathroom. His speech had also deteriorated a lot. Dad did get some speech therapy and was given VitalStim treatment, which really helped. Unfortunately, his insurance didn’t cover speech therapy or VitalStim therapy and both ended up being unaffordable without such coverage. Dad also liked to talk so his biggest fear was losing that ability. In addition, dad’s swallowing became much worse. We used thickeners for all of his drinks, and his food was cut into small pieces.

My mom was dad’s sole caregiver. Her full time job was taking care of him. Mom had always been a wonderful and caring person and we learned firsthand of how strong she had become in this situation. I think our biggest concern was is my father’s falls. Dad has never been a patient person and he never understood that he had to be patient and extra careful. He would try to get up when we weren’t ready so we’d have to watch him a lot.

At 70 and 66 years old, my parents were both very young to have endured such a process. Mom was in great shape and I didn’t know what we would have done without her. My siblings and I tried to help her as much as possible. We also tried to keep dad active and take turns with”daddy duty.” This gave our mom at least one day a week to get out of the house by herself. It also gave us a break from our busy schedules to spend time with dad.

PSP is a horrible disease. My siblings and I always talk how much we miss our dad. He is not the person we remember so we try to talk to him about the “old days” as much as possible. We all know how lucky we have been to have such great parents. All we can do now is take care of dad and mom as much as possible. I know my dad is in for worse days ahead. I will continue to do everything in my power to help more people understand what PSP is and the impact it has on our loved ones.