Carla Jennings

Ken and Carla Jennings

Our PSP Journey

Ken was a strong, healthy, intelligent (Indiana University grad), and a good looking widower when I met him in 1999. Ken lost his first wife, Karen of 30 years in June of 1999. I was also recently widowed at the age of 54 from my husband Paul of 19 years. Ken was full of life and vigor. He had always prided himself on his independence and ability to overcome any obstacle. Ken put himself through college in the evenings, with a young family at home, and became the first of his siblings to graduate from college. He went on to become a successful business executive and entrepreneur. Ken always put his family first, but was also always available to help a friend in need.

We enjoyed spending time with friends on the lake, playing cards, following NASCAR racing, and Indiana University basketball games. When Ken and I met and discussed the mutual loss of our spouses at young ages, he said, “you play the cards you are dealt.” This has been Ken’s philosophy on life, and on battling PSP. We were married in June of 2002, cruising around the lake on a ferry boat with our family and friends there to support us.

Soon after we were married Ken started having problems with his driving. He would get confused on directions, he had a few minor accidents, not to mention the close calls, and his perception of distance and closeness to the center line became very dangerous.

About the same time, he started losing his balance and falling with no warning and he would also fall asleep while driving. This is when he started having problems at work. Ken was manager of customer satisfaction and due for a substantial promotion. The head of Human Resources asked him to be tested for sleep apnea. After Ken went through the necessary testing, he was diagnosed with this disorder. The information we read on sleep apnea confirmed a lot of the symptoms Ken was having from loss of sleep. He wore the CPAP machine to sleep and changed his sleeping pattern, but his balance continued to get worse.

Ken was then referred to a psychologist, a neurologist and an ear, nose, and throat doctor. After more than a year of numerous tests and medications with no real results, the neurologist suggested we take Ken to the Mayo Clinic. Ken was diagnosed with PSP strictly from the symptoms, which included falling due to loss of balance, slowed movement due to shuffling his feet, and most of all, the slowed eye movement. Ken was forced to retire in December 2004 because his speech started to slur and his thinking slowed. We lived on a lake and Ken was home alone near the pier, the boat, and the water. I could not chance the risk of Ken falling into the water, so I took a leave from my job. We started reading every article we found on the internet and eventually contacted the Society for PSP, now CurePSP.

Janelle, Ken and Jack Jennings

Ken was then referred to a psychologist, a neurologist and an ear, nose, and throat doctor. After more than a year of numerous tests and medications with no real results, the neurologist suggested we take Ken to the Mayo Clinic. Ken was diagnosed with PSP strictly from the symptoms, which included falling due to loss of balance, slowed movement due to shuffling his feet, and most of all, the slowed eye movement. Ken was forced to retire in December 2004 because his speech started to slur and his thinking slowed. We lived on a lake and Ken was home alone near the pier, the boat, and the water. I could not chance the risk of Ken falling into the water, so I took a leave from my job. We started reading every article we found on the internet and eventually contacted the Society for PSP, now CurePSP.

May of 2005 was the turning point in our lives. It was Memorial Day weekend and I decided it was a good day to clean out the gutters on the house. Ken was outside with me and he wanted to help. I kept telling him that he couldn’t get on the ladder so he held the ladder for me and handed me the hose to help. I went inside the house for just a few minutes and when I looked out, he was on the top of the ladder. Just as I went out the door, he lost his balance and fell backwards flat on his back onto the driveway. He fractured the vertebrae in his back, which required back surgery and a six week stay in the hospital along with rehab. Needless to say, I felt so much guilt and there was nothing I could do to make it better. Ken came home from the hospital and continued rehab. At this point he needed someone with him at all times so I ended up quitting my job to take care of him. That made our decision for us. We were moving!

In October of 2005 we moved into the retirement community where we live now. Moving here before Ken needed the additional healthcare, gave him an advantage when he needed to make the transition to the nursing home. He would be automatically at the top of the list. We were able to stay together at home until April 2007. I remember the first day we walked into the health care unit. We both cried when we left. But I just could not lift him anymore and my patience and compassion were getting thin. The family sensed my stress and they (brothers and sisters included) were encouraging me to consider admitting Ken to the health care facility.

Ken Jennings

Ken receives physical, occupational and speech therapy at the health care facility. Due to his difficulty eating solid foods, his meals are pureed. Ken also had difficulty swallowing his meds and he refused to take them. Therefore, a G-tube was inserted to help with this process. His appetite has improved and he no longer has much discomfort in his back now that he is receiving the full dosage of medication. I feel so fortunate that financially I am able to be with Ken every day. My motto is “Seize the day.” No one knows when life on earth may end. I want to share every minute I can with Ken. I miss him so much. I keep busy in the mornings with housework and getting ready to go over to see him. However, in the evenings when I come home about 10:30 p.m. – that’s when I get lonely and really miss Ken!

As we all know, very few people have heard about PSP; doctors and nurses included. That’s why Ken’s family started the Ken Jennings Putt for PSP Golf Outing. Ken taught and encouraged his daughter and son to play golf when they were quite young, and the family often played golf together. Due to Ken’s love of golf, his children thought this would be a great way to raise awareness and money to help find a cure for PSP. The money that is raised every year is donated to CurePSP. Our 3rd golf outing was held this past July 2008. It is a great time for Ken to get together with some of his friends, family and golf buddies, whom he doesn’t get to see very often. Even though Ken’s speech is at the point where we can’t understand much of what he says anymore, we know that he very much enjoys this time. We are already planning the next golf outing for 2009. When I wear my CurePSP pin, I want people to ask me about PSP so I can continue to create awareness about this disease and help others affected by PSP.

People say to me that they admire me for spending every day with Ken. I just tell them, “you would do the same for your husband wouldn’t you?” On days his family or I struggle with the helplessness of this debilitating disease, we find comfort in the words that Ken lives by and, “we play the cards we are dealt.”