New Life for an Older Blog

This blog has been on hiatus because I didn’t really know what direction I wanted to go in. If you’re just happening by, come on in and get comfortable.  I’m a woman in my 50’s who was diagnosed with Parkinson’s in 2009.  Interestingly enough, my father was diagnosed the same month!  So you’d think it was genetic but we don’t think so.  My father was in the military and Parkinson’s is one of the accepted “gifts” one received from the use of Agent Orange.  But if that didn’t get him, there was tainted well water at a military installation we lived on (Camp LeJeune) and exposure to those chemicals seems likely to have been responsible for both cancers and neurological diseases such as Parkinson’s.  I subscribe to that theory for me, since my mother and sister also both have neurological disease but no one in our extended family suffers from any of the same disorders.

When I first started this blog, I was going to catalog my fight against Parkinson’s.  I think instead I’ll turn my attention to my fight FOR my life and my intention to enjoy it.  There are so many aspects to how Parkinson’s can affect a person – physical symptoms and non-physical ones.  I think by the time I sought out a doctor, I unknowingly had quite a few symptoms:  balance issues, leg pain, small handwriting, foot dragging.  I knew I was driving strangely, too,which worried me.  As I told the doctor, I was living a very small life.

The medicines I take handle the symptoms mostly for now.  But I know what the medicines “mask”, what awaits me if I, like a desert loses its irrigation source,were to lose my access to medications.  The shadow is there but I’m making the most of this lovely gift of time to enrich my life.

One of the fun things I’ve found is Tai Chi.  Tai Chi involves very slow, steady movements.  Its possible to “feel” those muscles on days you’re learning new positions as part of the greater form.  My class is sponsored by a  local Parkinson’s Foundation center, and brings in an outside instructor.  Bless this man’s  heart.  He knew next to nothing about Parkinson’s and has had to be very patient.  While Tai Chi is good for your balance, balance issues can make practicing it a challenge some days, too.  I’ve been taking the class since September and, while I’m not good, I really enjoy trying this, something so different than what I’d ever done.  And today, our instructor said he’d been reading up about Parkinson’s Disease and learned something about working on making movements BIG.  I was really touched that he’s been moved to learn more of  what his class is working with.

I’d love to start a conversation.  If you’re affected, tell me what you’ve found works for you and your fight FOR your quality life.  We have a lot to learn from each other.

Not “Me – Why?” But “Semper Fi?”

I went to hear my neurologist speak at a symposium last week.  A question or two came up about genetic links and Parkinson’s disease versus environmental factors, such as Agent Orange exposure (for which the military now gives 100% disability benefits).   The doctor explained that while there are some populations which have clear genetic links for Parkinson’s disease (PD), there is another way as well. It is possible for many people to carry a gene recognized for PD and never actually have the disease.  In the same way, it is possible to have no genetic predisposition but be diagnosed after being exposed to an environmental factor which causes Parkinson’s.

This brought up a question from me.  My father had been in the military and I had been the typical military brat who moved around quite a bit.  One of our homes had been at Camp Lejeune, NC, of which I personally have some lovely memories.  But apparently, they have discovered that there was tainted well water which supplied some of the housing there and many, many people have contracted diseases In all,  more than 750,000 Marines and military family members who lived on base at Camp Lejeune during the three-decade period in which serious contaminants, including chemical degreasers and organic solvents, seeped into the drinking water on base..

I asked the doctor if he thought there was a value in participating in the study.  After all, my whole family (mother, sister and I) have neurological or auto-immune diseases.  My father has PD as well but it is assumed his is from Agent Orange exposure during his two tours in Viet Nam.  The doctor’s answer surprised me by its definitiveness.  “Yes, absolutely”, he replied.  He said that tainted well water has been found to be the most common environmental agent for Parkinson’s.  If we joined the study, we would help give the investigators a more accurate view of the “bloom” of the exposure.   This blog is entitled, “Why not me?” and starts by explaining my acceptance of my Parkinson’s.  The only thing that concerned me when I was diagnosed  was whether it was a gift I was likely to give to my children.  Through participation in 23 and Me’s genetic study, I learned that I actually have a low likelihood of having PD or passing it along .  Because you do have to laugh, I’ll share that it also indicates I have a higher than average likelihood of becoming addicted to heroin.  Many a youthful discretion was committed by yours truly but heroin usage was not one.  Anyway, I, of course, would love to know a likely cause.  It’s strange but I’ve wondered – was it my mother’s fault for making me clean the bathrooms every Saturday with copious amounts of powdered Comet?  Was it the chemicals I used to clean my house as an adult?  Was it, in fact, those “youthful indiscretions” over a year or so when I was 16 that did the damage? This is the curiosity, the self-doubt that makes the Camp Lejeune history seductive.

In researching for this post, I discovered that the government sent out health surveys to certain categories of people who lived on base during this time and to some people who had just been earlier in gaining knowledge of the link.  The cut-off date for the survey was June of 2011.So its too late for me to get in on that but its not too late to follow up and see what the results are.  If you, like me, spent some time in the ‘60s and ‘70s living on base at Camp Lejeune, and you want more information, I found a good starter link at the government’s CDC (Center for Disease Control) at http://www.atsdr.cdc.gov/sites/lejeune/background.html .  For information from the affected families’ side, go to http://www.tftptf.com/5801.html .