Monday, August 22, 2011

Having Parkinson's Isn't All Bad

Michael J. Fox wrote in his first book that, in spite of the trials and tribulations that go with having PD, he was a "lucky man".  I have a pretty good idea what he means.  The Michael J. Fox Foundation is providing funding for the research that we all hope will lead to, at least, a treatment or medication that will halt progression of the disease, and, beyond that, a cure.  Through Team Fox he is also attempting to galvanize participation by PD patients in the clinical research that is crucial to making progress.  They also encourage patients to throw off the apathy that often accompanies the disease and use their creativity to organize fundraising events.  As a result of these efforts and more, he is attempting to make a difference in the lives of millions of people.  On a personal level, I'm sure he would say that he has a heightened level of appreciation for the people around him, especially his family (I can certainly identify with this).

Fox also writes in his book about the stages of grief that most people go through as part of their PD journey (denial, anger, bargaining, depression and acceptance).  I guess it was a form of denial that I spent the initial months following my diagnosis in appointments with my ENT, another neurologist, and a cardiologist looking for alternative explanations for my symptoms.  At the same time, I learned as much as I could about the disease through the internet, books, seminars, support groups and more so that I could advocate for myself and be an active participant in the management of my disease.  By the end of my second year following diagnosis, I had completed what I view as my "inwardly-focused information gathering" time period.  I had completed my memoir, a very cathartic and inwardly-focused exercise and was ready to "reach out".  I was feeling an urge to spend less time thinking about myself and more time trying to help others.  I had gathered enough information that I felt I had a good idea what I was "accepting" and began to look for opportunities to share what I had learned with others in my position in order to try to help them.

Late in 2009, I invited fellow residents with PD in my retirement community via our newsletter to gather at my house to discuss possible interest in forming our own support group.  Since then, we have held regular meetings mainly for the purpose of trying to help each other.  We also share information about the disease.  We have named ourselves the "Movers & Shakers" and have our own t-shirts (thanks to the daughter of one of our members).  We look out for each other in different ways and have mourned the passing of two of our members over the last two years.

Some of our group members, including Linda and me, are active in our local community support group which is part of the Parkinson Association of the Rockies (PAR).  Our community group has guest speakers on various topics plus we sometimes split up into patient and caregiver groups to talk about issues.  I have been a guest speaker there on a couple occasions and have also spoken to other support groups in the area.  I have talked about Parkinson's in general, cognition and memory issues with PD, and DBS.  As a result of my involvement in these groups, in my community, and in my church, I have been invited to meet with individuals to talk about their situations and provide information and feedback that I hope is helpful.  A friend from my former church in NJ connected me via email to a friend with PD in Quebec.  A fellow community member asked me to meet with a family friend who has PD and was visiting from St. Louis.  After one of our caregiver/patient sessions at my local support group I was asked to speak to a family who had attended the caregiver session and was very concerned about their father.  While I made it clear that I was not a substitute for a movement disorder specialist, it was clear that their father was exhibiting the classic symptoms of lewy body dementia.  I gave them a brief overview of what that meant in practical terms and referred them to a doctor.  They quickly put aside their differences and realized they needed to pull together to help their father (and their mother who was becoming an overwhelmed caregiver).  It was kind of scary for me to be put in that position, but I think I was able to make a difference for that family that day.

Early this year we were visiting with dear friends of ours from NJ who spend time in AZ during the winter.  Of course, they had known of my Parkinson's diagnosis for some time.  As we talked, Linda and I (Linda knows a good deal about the disease at this point too) were concerned about some symptoms Judy (names have been changed to respect privacy) had been experiencing.  In fact, I think it was Linda that was first to put two and two together.  We advised Judy that, as a result of my experience, it seemed like her problems might warrant a visit to a movement disorder specialist (she had seen quite a few doctors, but not a neurologist).  Since they were going to be in the Phoenix area a few more months, I referred her to Dr. Lieberman, director of the Barrows Neurological Institute and Muhammad Ali Parkinson Center.  She emailed shortly we returned home to tell us she had seen Dr. Lieberman and had been diagnosed with PD.  Though she was not happy to receive this diagnosis, she was relieved to finally know what was wrong and to be working with a top doctor in the field.

I have also had the opportunity to participate in various clinical research studies.  I like to do this for two reasons:
  1. I may learn something that will be helpful to me or others.
  2. I can contribute, even if in a small way, to advancing knowledge about the disease.
These studies have included a vision/spatial perception study before and after DBS, a study that evaluated acupuncture for treatment of fatigue in PD, a database development study conducted by the National Institute of Health/National Institute of Neurological Disease & Stroke, and a Lee Silverman voice therapy study.

For the last year and a half, Linda and I have had the privelege of attending our local Deep Brain Stimulation support group meetings.  We are fortunate in Denver to be the only city in the country (plus the recent addtion of a spinoff group in Grand Junction) with such a group, thanks to the tireless efforts of Valerie Graham and Kate Kelsall who both have had the surgery.  These meetings gave us an opportunity to hear first hand about their experience from people who have had the surgery.  Now that I have had the surgery (this past March/April), Linda and I still go to the meetings to help others as we were helped.  I appreciate that Kate and Val have recommended me to attend a two day educational seminar to be held the western U.S. early next year that trains people to be PD advocates in their communities.

For me there is nothing better than having an opportunity to make a difference in someone's life.  It takes the focus off me and put's it on trying to help someone else.  So you could say that, in some respects, my involvement in these groups and activities is self-serving.  What I can say for sure is that Is personally gratifying for me to do these things.  It has not escaped me that this is a gift from God, even if I don't necessarily agree with His choice of gift wrap.  All of it is a gift.  The transition to an ideal retirement environment close to our kids (and grandkids), my writing, my music (maybe another blog?), and most of all the opportunity to connect with so many great people in the "Parkinson's community".  I am truly blessed.

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