Facing Parkinson's


I knew something was wrong in January 2011. My legs started hurting deep inside my bones, sometimes so badly that I could not sleep. I would shift and turn in bed for hours, trying to get comfortable. Muscles in my legs started tensing up on both sides; sometimes I could see the contractions pass underneath the skin like a wave. I told my then-husband about these worrying symptoms, but we really weren't listening to each other very much by that point in our marriage. As I was worried, I went to my regular doctor, but he was very reassuring and encouraged me to wait and see if it got better. And so I did, for almost a year. But I knew something was wrong.

I have always loved to dance. Sometimes in moving with music I would feel connected to the universe, the warm sinuous waves of music echoing through my body, turning, twirling, connecting. In August of 2011, I noticed that I could not dance as freely as I always had, that some connection between my brain and my muscles was not working, that my balance was off and my movements rigid. I began to feel like I would fall when I danced. I noticed other things too, which in retrospect seem obvious. I had difficulty putting my children's sandwiches into lunch bags. Folding laundry was difficult and didn't make sense to my body or my brain. Going through security at airports was a nightmare, is as I felt like I took too long to do everything. My steps became shorter, slower, and I moved more slowly throughout my days. I became unable to use the computer, and people told me that I looked like I was in pain when I moved, and they were right. As my marriage continued to fall apart, I felt like I too was living in a dream from which I could not escape. What is surprising to me now is that it took so long to get a final diagnosis.

The first neurologist that I saw in the spring of 2012 indicated that my symptoms were very general and did not necessarily indicate a specific type of neurological disease. I saw a second neurologist in the fall of 2012, who thought I might have Parkinson's, but also considered a diagnosis of stiff person syndrome based on positive serum antibodies diagnostic for this condition. For whatever reason, I was terrified of the possibility of Parkinson's, and thus was initially pleased when another neurologist was insistent that my symptoms were caused by the stress of my divorce and my very busy job. As time went on and my walking deteriorated to the point where it was a major struggle to walk down the hall, the diagnosis of stress seemed less likely and I became more open to getting a firm diagnosis, no matter what it was. At this point, I remember thinking "it is what it is", and I need to find out what it is.

Eventually, I traveled to a clinic that specializes in a team-based approached to diagnosis, and within two days they had made a positive identification of Parkinson's and prescribed medication. I cannot begin to describe the relief that I felt as the medication began to help. For two years I had struggled with Parkinson's symptoms on my own. With the medication, at present, I have regained a great deal of my mobility and experienced significant improvement of my non-motor symptoms as well. I am very new to this journey, and I recognize that this is a progressive disease and that there may be tough times ahead. But having a firm diagnosis and a plan for treatment has been infinitely better than struggling by myself for what felt like a very long time. I am becoming involved in a young onset support group, and have been doing tai chi and other exercise, which give me great comfort. I have been on medical leave these past months, and will return to work in 10 days. I know that this next step may be challenging, as I try to integrate the self-care that I need into my working and living. But in some odd way I wonder if I may end up being a happier person than I used to be, more likely to take care of myself and appreciate the kindness of others and the beauty all around us as I move a little bit more slowly through life.