I would like to share the story of my journey before and after I was diagnosed with Parkinson's disease. What probably makes my story different from that of many people who have PD is that it becomes more hopeful and positive as time goes on. At this time in my life (more than nine years after diagnosis), I am feeling better than I have in years. I am privileged to have many friends with PD and, regrettably, they haven't had such good fortune. My wish for them is that they might find a reason to hope.
Life before Parkinson's
It feels like I've lived several lives. I grew up in a small town with my parents and two younger brothers, and married before my senior year of college. I had a short career in the 60's as an English and French teacher before becoming the mother of two sons. I was a stay-at-home mom during their early childhood, and a volunteer with various groups serving people with disabilities. I spent 10 years as an antique dealer (really!) and, during that time, studied and performed classical piano. After years of fighting the system to try to get an appropriate education for one son, I decided to go back to school at the age of 40 to become certified to teach special education. As a graduate student, my passion was ignited to learn and teach and advocate for people with disabilities. I became aware that I could make a difference in the lives of children with disabilities if I had the credentials to teach at the university level so that I could teach the teachers. My going-back-to-school days extended into a few more years.
After earning my Ph.D. in Special Education from Penn State, I got a job in 1990 as a professor of special education at a branch of Purdue University and moved from the ridges of PA to the flat land of Indiana, near Chicago. I loved my job, which consisted of teaching courses in learning disabilities, special education issues and trends, special education law, and assessment of children with disabilities, and doing scholarly writing and service to the university. [Click for professional background] I was divorced from my sons' father in 1993 but kept the professional name, Judith Osgood Smith.
In 1996, I married my colleague Bill Giddings, a counselor educator who trained graduate students to be school and mental health counselors. Bill is my best friend and companion. He always seems to be on my wavelength. I feel tremendously lucky to have such a sensitive, supportive, and caring partner. Life is good!!! A native of Oak Park, Illinois, Bill always wanted to live in the mountains. Our mutual love of nature and Native American culture fueled our desire to leave overpopulated, polluted Northwest Indiana. We purchased a home in rural Pennsylvania for our eventual retirement. I was thrilled at the prospect of returning to my childhood home, but loved my career and was not in any hurry to do so.
PD and Beyond
One November Sunday morning in 2001, something happened that changed my world...and Bill's. I was talking to one of my sons on the telephone when suddenly the phone began to move back and forth. I had a tremor in my right hand that soon became a wildly flapping companion wherever I went. My family doctor noted a decreased right arm swing. At that time, I had already had several years of massage and physical therapies for worsening muscle rigidity in my neck, shoulders, and back. After an evaluation by a Movement Disorders Specialist, I was diagnosed with Parkinson's at the age of 58. January 14, 2002 was PD Day.
I read everything I could get my hands on about PD and learned that Parkinson's is a degenerative disease that occurs with the premature death of a small portion of the brain that makes a chemical called dopamine. The brain needs dopamine to control the body's movement. Fortunately medications that replace or mimic the missing chemical are effective in reducing symptoms.
I decided to confront PD head-on by taking my medications and taking care of myself physically. I began a supervised program of weight training and exercise at the university, had several private yoga lessons, and continued work with a physical therapist trained in myofascial release (to help the muscle pain). I decided that a positive attitude and activity were 90% of the battle, a way to keep PD from progressing. What I failed to understand at that point is that PD would progress no matter what my attitude was. Nevertheless, I can say that I have learned that there are things I can do to minimize progression that allow me to live a full and active life (more on that, later).
One day in the spring after I was diagnosed, I was doing a "crunch" on a balance ball, when an abdominal muscle cramped and became painfully rigid. That tight muscle is still a problem today, although I have learned that I can often avoid getting into positions that trigger the spasms. At that time, medications helped somewhat with my tremor, but muscle pain (especially in my neck and shoulder) became a fact of life.
Bill and I had been planning an early retirement, but it became even more pressing because I no longer had the physical stamina to stand to teach three-hour classes or to carry out the other responsibilities of my job. Family beckoned from the ridges of PA. May 2002 brought the death of my beloved father and I wanted to return to be near my mother who had had a major stroke. In addition, PA lured me with two new granddaughters and a grandson.
The First Summer After Diagnosis
We retired from Purdue, put our house in Indiana on the market, and moved to our PA dream home, on the edge of the forest. Ah! Quiet at last! Birdsong and clean air! Time to take a deep breath and relax. However, that summer was extremely difficult because of Parkinson's. My tremor flared up after I helped Bill install a fence for the dogs. Body aches and pains were intensifying, and I couldn't sleep at night because pain was keeping me awake. I tried two different massage therapists...no help. I practiced yoga on my own, but it only helped briefly. In desperation, I made an appointment with a chiropractor. Bill and I were shocked to see the x-rays after his evaluation. Osteoporosis (diagnosed via a bone density test after two fractures in 2001) and muscle rigidity had turned a slight spinal curvature into a markedly curved and twisted spine. I had lost 3/4" in height in the six months since my PD diagnosis!
My neurologist prescribed a new PD medication and something to help me sleep. The medication I was taking for the PD put me to sleep within 15 minutes of taking a pill, but it didn’t eliminate my tremors. And the nighttime sleep medication knocked me out so that I could barely get out of bed in the morning. I was also losing gobs of hair and the pain was becoming more severe. I stopped the sleep medication, but almost any activity hurt. It took a week to recover from vacuuming or doing any other housework. I spent many days just sitting in a chair...hurting and depressed. Bill--always supportive and caring--watched and worried, but was powerless to help me.
Finally, my family doctor prescribed a low dose antidepressant/muscle relaxer to help with sleep, as well as pain medication to help me break the pain cycle. The quality of my life improved dramatically. For the first time in several months I had some real, though often temporary, pain relief. Nevertheless, I had lost my passion to make a difference in the world and was pretty much alone with my Parkinson's. We lived 10 miles from town and I didn't even know another person with PD. Life revolved around chiropractic treatments and visits to my mother. I didn't have the energy to do anything else. I couldn’t walk to the mailbox at the end of our driveway and back. I also had a lot of trouble with balance and needed help getting up from the floor.
Internet Support Groups for People Living with PD
Although I didn't feel like doing much physically, I found that I could spend hours at the computer. One day I got brave and signed on to the chat room of an organization called People Living with Parkinson's (PLWP). To my amazement, everyone welcomed me. I listened and learned of the trials and triumphs of others with PD, and met others who could also understand what I was feeling and going through. I also found another site with a chat room that had a small group of folks who talked on line together two evenings a week and I looked forward to conversations with these open and caring people. Thanks to these support groups, I talked with people of all ages and stages of PD. For the first time since I was diagnosed with PD, I truly felt alive and hopeful.
A New Doctor, New Meds, and New Outlook
I eventually decided to switch from my neurologist to a movement disorder specialist at a university about three hours away from home. It was one of the best decisions I made. My new doctor took me off of the dopamine agonist Requip and started me on Sinemet (carbidopa/levodopa). I purchased a pill alarm and started taking my Sinemet at the exact times prescribed by my doctor so that there would be a steady amount of dopamine in my system. I immediately experienced improvement in my tremor and in my ability to walk, and no longer fell asleep with every dose of medication. I continued to take the pain medication daily, but also began incorporating more activity in my daily routine. I began a walking program and, despite a fall that set me back, my legs began to get stronger. I began participating in weekly yoga classes and also began having bi-weekly deep tissue massage. All of these things improved my strength, balance, and flexibility. I was once again able to take care of the house. I didn’t need help getting up from the floor.
The Edge of the Forest
My life took another positive turn when the site that hosted my small group of friends was scheduled to shut down for lack of a sponsor and the group began looking for another quiet place to meet. I had already begun work on our personal site when it occurred to me that I could incorporate a chat room and forum that would be a place for the group to meet. And so, The Edge of the Forest was born. My world has literally expanded since the creation of this website in June 2003. This project reignited the spark of passion I had had years ago as an advocate and professor; I saw that there were many things I could still do. I realized that I was not alone, but also that there is a lot of work to be done before we have a cure and there are many people who need to talk, laugh, cry, and find a reason for hope.
The best part of this site is the caring, supportive group of people who come here. I have found a great deal of pleasure in creating personal pages that showcase the stories and talents of so many friends. We have received feedback from people all over the world who are finding Bill's metaphors helpful. We love sharing this beautiful corner of the world with others through photography. Bill and I now are avid photographers and we enjoy photographing the forest and lovely flowers around our home.
The Healing Dulcimer
Music has always been a part of my life and I used to love playing the piano. Since PD came into my life, however, I can’t sit at the piano for more than a few minutes without experiencing severe back pain. Bill must have missed the music as much as I did, because he purchased a mountain dulcimer for me. The dulcimer is a stringed folk instrument that was developed in America by the early settlers. I soon discovered that I could sit with the dulcimer in my lap and play for hours on end, with no pain!! And so, I poured myself into learning to play this instrument. Its lovely sounds are wonderfully calming and soothing to me. And in the process of adding this new dimension to my life, I learned that the music is soothing to others as well. I played the dulcimer at my mother’s bedside when she was dying. I have a friend who plays the harp and we make beautiful music together! We have played at community events and nursing homes. In addition, I completed training as a hospice volunteer and I play for hospice patients and their families. (Click on the video below to watch me play one of my favorite songs, Over the Rainbow.)
As for the Parkinson's, it is progressing at a tolerable rate. I am learning how important it is to not only take care of my body, but also to care for my spirit. The gift of music has increased my well-being and I feel that it has contributed to my own healing. With regular massages, yoga and exercise, I actually am stronger and have better balance than I had a several years ago. I have developed a manageable routine for caring for the house and myself. I have even been able to discontinue the daily pain medicine.
I love living at the Edge of the Forest. Even though I know that Parkinson's will continue to affect my physical body, that is only one part of my world. When I go into the forest, the beauty and quiet help me to turn inward and get in touch with the person inside my body. The journey is leading me back to myself. I still have a lot to learn and a lot to do.
In the words of Robert Frost:
The woods are lovely, dark and deep,
But I have promises to keep,
And miles to go before I sleep,
And miles to go before I sleep.
Stay tuned for the next chapter.