When you know one person with Parkinson's, you know one person with Parkinson's.

When you know one person with Parkinson's disease, then you know one person with Parkinson's.  What I mean by that is Parkinson's disease manifests itself differently in every person affected.  I know the specifics of my mother's onset and progression of the disease, but the more people I talk to whose loved ones have Parkinson's the more apparent it becomes to me that each person with PD's experience is unique.

It is true that certain motor conditions need to be present for Parkinson's to be diagnosed.  Those motor issues can be tremors, rigidity, balance issues or slowness of movement.  From there the list of possible symptoms of Parkinson's expands.  It's a wide selection of things you would not want to have happen to you.  

I can only share with you the disease as I know it through my mother.  The more I research the more lucky I feel that her progression has been slow and only recently has become more debilitating.

My mother was diagnosed eleven yeas ago when I was pregnant with Coleman.  She had apparently been experiencing a tremor in her hand and some difficulty in writing.  I remember her telling me that she was glad it had not turned out to be a brain tumor.  My father's mother died on the operating table when they were trying to remove her brain tumor.  Leave it to my Mom to find a silver-lining in the diagnosis of a progressive degenerative disease.  

Early on, Mom hid her symptoms very well.  She would hold her hand so it would not tremor.  But even in the first couple of years there were thing she did not feel comfortable doing because of her Parkinson's.  Looking back, my mother never carried any of my babies.  She would always be sitting and I would place my sweet bundles of joy in her lap.  She voluntarily gave up driving a few years into the disease as well.  Better to be safe than sorry.

My memory is not great and when I think of the progression of her Parkinson's the details are fuzzy.  There were certain benchmarks that I know were unfortunate but necessary, like the handicapped parking sticker and the use of a walker.  Sometime ago, maybe four years, she developed the "mask" of Parkinson's where you lose control of your facial muscles and look expressionless.

In the past year, it has gotten difficult for her to focus her eyes and she has become sensitive to light.  Mom also suffers from speech challenges with regard to articulation and projection, another one of those lovely gifts from Parkinson's.  What disturbs me the most is the extreme weight loss that she has experienced over the last two years which is the result of her increasing difficulty with swallowing.  All of these muscles which seem to work automatically in healthy people start not working so well for people with Parkinson's.

As wretched as all of this sounds, I assure you that there are many people with Parkinson's out there who are far worse off.  What I am most grateful for is that when I see my mother or I call her, I am still talking to my Mom.  She is still the amazing person she has always been.  For many people with Parkinson's there are cognitive, emotional and behavioral symptoms and she either has not yet experienced these or hides them very very well.  Every day with my Mom in my life is a blessing.  

How slow can you run and still call it running?

I am not sure how slow you can run and still call it running, but I was definitely pushing the edge of that question yesterday during my twenty mile run/walk.  I did a 5 mile loop near my house four times.  The first couple of loops were strong and I felt pretty good.  The third loop I started feeling tired and the fourth loop was nothing short of brutal.

I had perfect weather which helped, but as the day wore on, and I was running for 5 hours so it wore on and on, it got progressively warmer.  By the last 2 miles I felt like I was running on sticks with glass chards on my feet.  I also had some serious arm chaffing by the last loop.  I need to buy some "glide" or whatever its called.

Fortunately my orthotic inserts helped keep my feet in place and my toes were not as damaged as with the last two long runs.  Don't get me wrong, those big toenails will still be coming off at some point, but I did not have to pop any blisters underneath my toenails after this run.  I'll call that a win!

After a twenty mile run I was pretty non-functional.  I could barely walk and  things like making dinner or picking up after myself, forget about it.  Strangely, I seem to have a hard time regulating my body temperature after my last three long runs.   I think it is just a sign that I am asking too much of my body.  My left knee was also in throbbing pain last night making it very difficult to sleep, even with advil and tylenol, my knee persisted in throbbing.

Today is better.  I can walk like a normal person although I do feel bone tired.  I am not excited about my next run.  Thankfully, my next long run is not for another three weeks.

The highlight of this twenty mile tour around the neighborhood was listening to my Integrative Nutrition lectures while I was run/walking.  Ironically one of the lectures was on Ayurvedic medicine by .  The theme was to go with the flow, living in tune with the seasons,  and nothing in excess.  Do you think running for 5 hours is excessive?  I do.  I'll start being more balanced on October 31st.

 My favorite that I listened to was Bernie Seigel, an MD who works with a lot of cancer patients.  He had great advice for living life and being in tune with your body.  He shared amazing stories of recovery, hope and spirituality.  It reminded me of what a blessing it is to be alive and to be able to do this marathon to honor my mother.

5 + 5 + 5...snore

Since my last run I have completed 3 five mile run/walks.  I don't think I had to run that far on each of the runs, but unless I am out there for over an hour I don't really feel like I have had a workout.  This past week was notable because of Irene.  We were in Atlantic Beach, NC watching the weather forecasts and wondering if we were going to get hit head on.

We decided to leave Thursday, the day before the mandatory evacuation hit.  I managed to squeeze a run in before we left.  It was a triathlon of sorts, run for an hour, clean/pack/load for three hours and then drive for seven plus hours.  Needless to say I was spent on Friday.

Irene blew threw on Saturday and Sunday morning.  Sunday afternoon I picked up some new orthotic inserts for my shoes.   I had a relaxed non-eventful run around my neighborhood loop Sunday evening.  The orthotics seemed to help because my toes were not mad at me afterwards.  My house and neighborhood did not seem to suffer any damage from tropical storm Irene.  Today I am having some minor protests from my left knee, but I don't know what that is all about.  Hopefully it is nothing as I need to run 20 tomorrow.  Oy.

Oh and boy am I glad we left Atlantic Beach.  As of yesterday they had no power.  I hope they still have a beach!

Mini long run of 11.5

The Galloway program has you running long runs every other week and then shorter long runs on the off week equal to half the distance of the previous long run.  This weekend I was supposed to run 9 miles but ended running 11.5 just so I could make it all the way to Fort Macon before turning around.  I walked the last mile and a half.

It was a beautiful sunny day and other than my big toes, everything felt great.  My long runs are pretty boring without my ipod from the Institute for Integrative Nutrition.  Normally I listen to the lectures from the program while running.  I am very alert and manage to retain a lot of the information from the lectures despite not taking notes on my runs.  My ipod froze on the lock position and it needed to get sent away for repair.  Supposedly, it is fixed and sitting on my front step in Fairfax, VA.  In the meantime, I am listening to the radio on my iphone which feels way less productive!

What is Parkinson's

I know I promised some not-so-fun facts on Parkinson's disease so here are the basics in question and answer format.  Please know that the answers to these questions will be cut and paste from other websites.  :)


What is Parkinson's Disease?


Parkinson's disease (PD) is a progressive disorder of the nervous system.  It is a motor system disorder which resulting from the loss of dopamine producing brain cells.   With an annual incidence of approximately 20 new cases per 100,000 people, the prevalence is 200 cases per 100,000 people or 0.2%. There are 1,000,000 or more people with PD in the United States; more patients than with multiple sclerosis, amyotrophic lateral sclerosis, muscular dystrophy and myasthenia gravis combined.


What causes Parkinson's Disease?


It is not known what causes the death of the dopamine producing brain cells which result in Parkinson's disease.  There is increasing evidence that Parkinson's disease may be inherited, but there is considerable controversy over this.  Most likely Parkinson's is caused by a combination of genetic and environmental factors. 

There is some evidence that certain toxins in the environment may cause Parkinson's disease. Scientists have suggested that external or internal toxins may selectively destroy the dopaminergic neurons, causing Parkinson's disease. Toxins that may be linked to Parkinson's include manganese, carbon monoxide, carbon disulfide, and some other pesticides.

Also, it is believed that oxidative stress can cause Parkinson's disease. Oxidation is a process in which free radicals (unstable molecules lacking one electron), in an attempt to replace the missing electron, react with other molecules (such as iron). Free radicals are normally formed in the brain and body, but usually the brain and body have mechanisms to get rid of them. In people with Parkinson's disease, the mechanisms may not be effective or they may produce too many free radicals. It is also possible that environmental toxins may contribute to abnormal free radical formation and lead to Parkinson's disease. Oxidation is thought to cause damage to tissues, including neurons. In most cases, antioxidants protect cells from free radical damage. (These past 2 paragraphs were cut and paste from webmd)

Is there a cure?

There is no known cure for Parkinson's disease.  Treatment options center around management of symptoms.  

Four at tempo

Yesterday I ran four miles at tempo.  Nothing exciting just a little faster than my long runs and a little less walking.  I was able to pop a couple of the blisters underneath my big toenails towards the top which helped alleviate a lot of pressure and pain.  The big toes still make me aware of their presence at all times, but at least they do not hurt too badly.

My marathon training is pretty mellow except for the long runs every other week.  My goals is completion and injury prevention.  Serious runners do a lot of speed work and cross-training.  I will just be seriously happy to finish.

When I get home I am going to get some orthotics for my running shoes to prevent my feet from sliding forward too much.  I have high arches and normally I wear them, but mine were getting a bit too ripe before we left so I figured I would leave them at home.  We all make mistakes.

An easy 5

After two days of  rest and a great sports massage from Janet at the OC Spa, I was ready to get back to running.  I am following my own interpretation of the Jeff Galloway Program.  I bought the book 15 plus years ago and am following the recommended training program in there for the "just finish" goal.  I completed the 1996 Marine Corp Marathon by training according to his schedule and plan to do the same this year.  His program is built around the premise that running followed by one minute walk breaks prevents injury.  During the past 15 years I have been no stranger to injury with many bouts of plantar fasciitis and chrondomalacia, read unhappy feet and unhappy knees, and so the emphasis on running injury free resonates with me.

This past Spring I was training for the Cherry Blossom 10 miler and was feeling great.  It was during one of my long training runs for this that I felt so good a little voice inside my head said, "maybe I could run another marathon!"  Training for a marathon is a very self indulgent process and the only way I could justify it to myself was to marry my annual Team Fox fundraising efforts to the Marine Corp Marathon.  If I am being a good daughter by raising money for Team Fox then I won't feel as bad about taking this much time away from my husband and kids.

So today was an easy five and the only thing that hurt were my angry big toes.  They both have blisters and hurt badly underneath the nail.  I am not sure what this means, but when I get home from vacation I will look it up in my Galloway book!

  

The long run that sealed the deal.

Yesterday I successfully completed an 18 mile run.  I figured if I can run 18, the next 8 should be fairly doable, barring any heinous injury.  The first 13 miles was an easy, somewhat humid, and super sunny 13 miles to Fort Macon and back.  There were plenty of places to buy water and it was fun to check out the abundance of real estate available for sale.

The last five miles were a very slow out and back on the beach during low tide.  The breeze was awesome although my legs were pretty darned tired.  Since I was already soaked with stinky sweat, I ended my run with a swim in the ocean.  By "swim" I mean I walked in until I was deep enough to just kind of stand there and hang out.  The nice thing about the post long run swim is that it cools you off quickly.  The not so nice thing about it is it makes you acutely aware of where you acquired rashes during the run.

I am very excited that the Marine Corp Marathon is actually within the realm of possibility.  I had my doubts two weeks ago after a disastrous 16 miles on Marco Island.  I got heat exhaustion from running mid-day in FL - go figure - and could not get my heart rate under 180 unless I was walking and so I walked the last 3.  Hopefully it won't be 95+ degrees on October 30th.  

Just the beginning...

Thanks for stopping by to check out my blog on training for the Marine Corp Marathon.  I am training for the marathon, and plan on completing it, in order to raise money for Team Fox, the grassroots fundraising arm of the Michael J. Fox Foundation. I joined Team Fox three years ago in honor of my mother, Nancy Messick Ray, who was diagnosed with Parkinson's Disease in the year 2000.  My mother has endured this disease with grace and dignity despite its increasing impact on her quality of life.  I believe that the research funded by MJFF is the best hope to improve the life of my mother and the lives of other Parkinson's patients.

I hope you will join me in the fight against Parkinsons disease by supporting my Team Fox efforts.  Direct donations can be made through my Team Fox page.

If you are interested in following the journey of an ordinary forty-something year old trying to do something out of the ordinary, please follow my blog.  For the next few months I will posting the dirty details of training, some fun facts about an amazing woman (my mom), and some not-so-fun facts about Parkinson's disease.