My name is Steve Mueller and I would have been married to my lifelong sweetheart, Virginia (Ginny) for 42 years on Feb 22, 2012, had it not been for this awful, awful disease called PSP that permanently interrupted our lives together. After reading other stories online, I’ve decided to share our experience of PSP. If my story will help just one person the way those other stories have helped me, then it is worth it.
Our story began in our senior year of high school. Ginny and I had known each other for years through school and church youth group, but only as good friends. On that Sunday, October 13, 1964, we kissed for the first time and never stopped until January 11, 2012. It was the beginning of a lifelong love affair which included graduation from high school, Ginny attending college, and I entering the Army. After those three years apart, we were reunited until the end. Along the way we had a wonderful, full life together, having two sons that are incredible in their own ways - different but very similar at the same time. Ginny and I loved our boys - more than anything else in the world.
Both of our parents moved to Fort Lauderdale, Florida in the early 1950’s. Ginny and I grew up there, went to school there, and married on February 22, 1967 at the age 19. By the time I was out of the Army, we had our first son, Steve ll, so our busy lives were off and running. About two and a half years later, we had our second son, Scott. Ginny did not take a job until the boys were in high school so she could be home with them and raise them correctly, which she certainly did! Before we knew it, the boys were married and had families of their own. Steve married a woman named Pam and they had two sons, Stephen lll and Brandon, who are currently 18 and 16 years old. Scott married a woman named Brooke and they had four children, Bailey who is 6, Tyler who is 4, and twin girls, Alaina and Brenna, who are 2.5 years old.
After living in Fort Lauderdale for over 42 years, Ginny and I moved to North Carolina where we could see mountains from our back deck. Ginny loved the mountains - this was home. We both had good jobs and very active lives with our families and church.
Looking back on it, I’m able to realize that things began to change as early as 2006. Ginny’s first symptoms were fatigue and slowness of movement. At the time, I thought she was just working too hard, etc. - the usual things. As she began to worsen during the latter part of 2007 and into 2008, her work began to suffer and she could not keep up with normal day-to-day routines. Looking back at the time, we thought it was just the effects of working too hard and getting older. By April 2008, Ginny’s hand movements began to get a little shaky and her words became slurred. Ginny worked as an administrator in a family practice doctor’s office - her boss finally called her into the office and told her something was wrong. Her boss had her see another doctor that afternoon, who sent Ginny directly to a neurologist for a checkup. That was her last day of work, in late April 2008 - our lives had now changed forever. The neurologist ran several tests, concluded that Ginny had Parkinson’s disease, and referred her to a big name neurologist, saying that if anyone could help her, this new neurologist could. We made an appointment to see the big name neurologist. He ran several tests and concluded that Ginny had multiple sclerosis (MS). We were totally confused and frustrated. We didn’t know what to do but knew that Ginny was not getting any better. The doctor started Ginny on a daily shot program and exercise routine that were supposed to slow down the progression of her symptoms, but as many of us now know, nothing slows down progressive supranuclear palsy (PSP).
We continued down this path for approximately 8 months with no results. Ginny’s fatigue worsened and she had to resort to using a walker to get around. We decided to get a second opinion at Duke University. Two visits and a great deal of expense later, the Duke neurologist called her a “mystery woman.” He had no idea what she had and actually told her she was nothing but a “lump” - no activity. I should have punched him out. We left with more frustration and no answers.
We continued with the MS treatments but our two daughter-in-laws knew something wasn’t right. By exploring internet resources, they came to suspect that Ginny had the symptoms of PSP. The more we read about PSP online, the more everything fit together. Armed with this new information, we went back to the neurologists we were seeing. One of them called in an associate who was an expert on PSP. He determined Ginny had both PSP and MS! All this took months to get done so you can imagine our frustration and anger over this doctor’s incorrect diagnosis. This doctor gave us some fresh information, but of course, it wasn’t good news. While one can continue living with MS, PSP is always fatal. At the time, I could not comprehend this, but now I know and realize what was happening.
Eventually, Ginny needed a full-time person to be with her to help prevent any falls and I was still trying to work a full-time job, so the Lord sent us a gift from heaven in the form of neighbors who lived across the street - Laurie, a retired radiation therapist having much experience in handling handicapped people, and her husband, Greg, a physician’s assistant at a local family practice. They were such a blessing - Laurie took over Ginny’s care and all but moved in while I worked so we could maintain our home.
It was very difficult for me to accept help from anyone - I wanted to take care of Ginny myself and thought I could do it all, but I finally realized that my family, friends (like Laurie), and church family had a need themselves to help us and so it all grew together to one common goal - caring for Ginny. Praise the Lord for family, friends like Laurie and Greg, other neighbors, and church family.
By late 2010, I had to retire so I could stay home and take full-time care of Ginny. She could not talk clearly and her hand motions were quickly degrading. She could not walk and was permanently confined to a wheelchair.
Ginny had always loved to fish, so I took her fishing in her wheelchair at a local pond that had a wooden pier she could sit at. It soon became very apparent that she could not even hold a rod and reel, much less catch a fish – our frustration was humiliating. That was the end of Ginny’s fishing career.
We decided to take her to the University of Louisville in Kentucky, where PSP is often researched. In June of 2011, Pam, one of our daughter-in-laws, Laurie, and I took Ginny on a road trip to Kentucky. What a trip! We had already sent all her medical records to them so they were expecting us. After a day’s worth of tests and observation, they told us that Ginny definitely had severe PSP and never had MS. Wow - what a revelation, but at least after 3-4 years, we finally knew for sure. They asked us if we would consider donating Ginny’s brain to research - it would be harvested at the funeral home. This realization was a lot to handle for all of us. Ginny agreed - she wanted to donate all her organs but only her brain was deemed suitable, due to the specifics of the disease.
At the time of the trip to Kentucky, Ginny’s bladder was not working and was causing her to urinate about every 30 minutes, so she wore a Foley catheter bag. After the trip we went to see the urologist and talked about a permanent Foley catheter. When the nurse first told me that I was going to have to manage this, I freaked out. For me to insert this “thing” into my wife’s “private parts” was over the top. I had worked in an industrial warehouse for the last 45 years - what did I know about catheters?! But you know, I did it and got pretty good at it, by God’s grace.
By the last half of 2011, Ginny was failing fast. Her mobility was almost all but gone. She could not talk or even use her hands at all. Our living room became her hospital room so we could take care of her around the clock. Hospice was called into our home in October 2011 and that was a huge help. Having doctors, nurses, and CNAs there to assist was a huge help.
We made it to Christmas 2011. The day after, I was trying to get her from her wheelchair to the toilet and her knees gave out. I knew that once this happened, I was no longer able to take care of her at home. The thought of this was heart wrenching - I wanted to take care of Ginny at home. I guess I had not really accepted the fact that she was going to die soon, but I had to. The next day, they transported Ginny to the hospice hospital, where she lingered 15 days and passed away from pneumonia and heart failure. PSP itself does not kill – it is the symptoms that do.
Now that the one year anniversary has passed, I feel I am well on my way to whatever a new life may bring. I can only do this because I know “my Gin” is in the arms of Jesus. If there is anything positive I can say about PSP, it would be that does not linger for many years like some other diseases. When we were in the thick of it, time seems to go on forever, but looking back she suffered for only 2 to 3 years. Ginny really had no pain - just a total loss of all motor skills and bodily functions. Every day of the last 2-3 years seemed to drag on forever due to the frustrations, anger, and just not knowing what was really going to happen. Hopefully, through this story and others like it, people may find extra help and more insight into this terrible disease.