My Journey
(updated 10/8/06)

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 disabilites. 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 lovely log 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. I also had had several years of massage therapy and physical therapy 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. My doctor told me I was one of the lucky ones because I was diagnosed at a time of growth and discovery in the PD field. She informed me that PD symptoms are often greatly alleviated by drugs (and new ones are being approved all the time) and a "cure" is just around the corner--surely it will be here by the time I need it!

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. Exercise might keep me stronger but it would not prevent the death of neurons.

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. The supervised weight training and exercise program came to a screeching halt! That tight muscle is still a problem nearly five years later. Whoever wants "six-pack abs" can have them! The medications helped with the tremor, but muscle pain, especially in my neck, became a fact of life. It became clear to me that PD was not going to go away and it would progress. I was confronted with the reality of a wasting disease associated with the elderly. Although 40% of the 1.5 million people with PD are younger than 60 and many are diagnosed in their 20's and 30's, Parkinson's is considered a disease of the elderly (picture the shuffling, trembling, drooling old man or woman).

Bill and I had been planning an early retirement, but it became even more pressing because I no longer had the physical stamina to teach three-hour classes and 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 at Ravenwood

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, trouble was brewing.

Even though the move went smoothly, that summer was extremely difficult because of Parkinson's. My tremor flared up after I helped Bill install a fence for the dogs. My 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!

I also had an appointment with my new neurologist, who prescribed a new PD medication and something to help me sleep. My tremor began to improve as the dosage of the new medicine increased, but the sleep medication quickly turned me into a zombie. It 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, I saw our new family doctor, who 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, thanks to both chiropractic treatments and medication. 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, even though I had the love of my family. 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.

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 chatroom that had a small group of folks who talked on line together two evenings 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. By the way, I gained back the lost 3/4" of height--thanks to chiropractic and weekly yoga classes.

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 chatroom 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 beautfiul 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. In addition to photography, my days are filled with work at the computer as the marketing consultant for two different companies. In this capacity, I design and maintain commercial websites, and create national and local print advertisements and brochures.

As for the Parkinson's, it is progressing at a tolerable rate. As the medications change, I am learning how important it is to not only take care of my body, but also to care for my spirit. With regular massages, yoga, chiropractic, and exercise, I actually am stronger and have better balance than I had a year or so ago. I have developed a manageable routine for caring for myself and for Ravenwood. Pain is a fact of life and so is taking prescription medicines. But life is still good!

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.