Caregiver, husband, adventurer
I was asked to participate on this website as a Parkinson’s support person, my wife has Parkinson’s disease.
I first noticed Brandi in August of 2008. I was working, as a fireman, and my partner and I were taking a patient to the Emergency Room for further treatment. We wheeled our cot through the back door of the ER and awaited room assignment. It was here that I first caught a glimpse of my future wife. She caught my eye almost immediately, a small, cute nurse about my age, hair pulled back in a ponytail, blue eyes, and a great smile, she was beautiful. My encounter lasted only a few moments and then I was on my way. A few days later I received a call from a co-worker asking if I wanted to go on a date with a nurse he knew… apparently I wasn’t the only one in the ER that day who had noticed someone. Sure enough, it was the same nurse I had seen and so I happily agreed to the date. My last first date was September 12, 2008. This year I married Brandi and I am proud to say we are expecting our first child this December, 2011.
I was 30 when Brandi (28) and I first met. Our relationship was just like any other, we enjoyed doing virtually everything together. I taught her how to fly fish and ski, we rafted and hiked together. We were, and still are, a very active couple. However, a few weeks into our relationship I began to notice a slight twitch in Brandi’s leg, almost like her leg was always subtly vibrating. I ignored my urge to ask her about it and moved on. It wasn’t long after that that we were hanging out when she said she had to tell me about something, she looked nervous as she told me that she had been to a doctor who guessed that she had Parkinson’s disease a few years earlier. She went on to tell me that no one could know for sure what was wrong with her legs, but Mayo Clinic had accepted her as a neurology patient and she had been placed on a waiting list for an appointment. I remember being upset, I really liked this girl and was hoping for a serious relationship with her. But, Brandi reassured me that everything was okay and there was no use in stressing about the unknown… we would just have to wait and see. Life went on as normal for a few more months and then in January 2009 Brandi went to Mayo. She was gone for a few days and returned with no definitive news other than that Mayo was still running a few genetic tests and she wouldn’t get the results for a few months. Again, life went on as normal.
It wasn’t until February that Mayo called with results. I was at work and Brandi called during my dinner break, just like always. Only she didn’t sound her normal cheery self, something was very off but she insisted everything was fine. After several minutes on the phone I asked “Did you get your Mayo results?” There was a silence and then sobbing… Finally, she managed to tell me that her results had come back and the doctor had dealt her a devastating blow. Brandi tested positive for the PARKN mutation, given her symptoms and the genetic result her doctor was “confident” that she had Early Onset Parkinson’s Disease.
I remember thinking: “Is this really happening?” I was stunned and worried about Brandi’s progression and where it would take our relationship. Many times I thought: “I can’t do this, it’s going to be too hard.” I feared watching her get worse and I was terrified of our future. I was devastated but didn’t want to give up on her. I knew that Brandi was the right girl for me, I just didn’t know how to deal with the Parkinson’s disease… and frankly, I didn’t want to deal with it. All I could think of was this horrible disease ruining my girlfriend. I couldn’t bear the thought of watching her hurt or struggle to do things. And, I was afraid that I didn’t have the strength to stand by and watch PD wreak havoc on her. I was obsessed with worst-case scenarios. It was torture. Then one day, after we had been dating for about a year, Brandi told me she loved me… all of a sudden I couldn’t commit. I mean, I wanted to commit to her I just couldn’t commit to the PD. I was completely torn between a great girl and a disease that was going to take her from me.
I made the decision to tell Brandi that I needed some time to think things through about us. I knew she was hurt, but she agreed. She didn’t want to drag out a doomed relationship. She allowed me time but told me that I needed to figure things out on my own and then she removed herself from my life. I asked everyone that I looked up to for advice. I was sad, lonely, and depressed. But, after a few days I realized what I needed to do and I called Brandi. It wasn’t long before she called me back and I told her that I was ready to move forward in our relationship. I told her about how conversations with friends and family made me realize how happy she made me, and that I wanted to be with her. I was honest and told her that PD scared the hell out of me, but it scared me more to walk away from our relationship.
We have been together almost three years and, so far, I have not seen anything Brandi can’t do. She’ll say she’s uncoordinated, but I have watched her learn to ski, fly fish, and mountain climb in a relatively short period of time. Last year she convinced me to climb the highest mountain in Montana (her first climb, of course.) This year she ran her first 5k—completing it in less than 30 minutes. I proudly watch as she sets and then conquers goals one-by-one.
Brandi and I choose to live in the “now” and take things one step at a time. We know she will progress but it’s a slow process and we have time to prepare for what may come. We plan for a future with PD- but for now, we focus on the family we are about to become. I don’t see the worst anymore; I just take things day by day and enjoy every moment with my wife—just as she is.