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5-10 Years

                      It’s been almost eight years since I heard those four words…you have Parkinson’s disease. Back then, I heard doctors and researchers say that there was more research being done than ever before and they were hoping for a breakthrough treatment in the next 5-10 years.     Well, that 5-10 years seems to get pushed down the road a lot.     At first, I was encouraged but it gets harder and harder to hear it.     One of the issues with having a lot of friends with Parkinson’s is that you lose a lot of friends with Parkinson’s. Not all of them have 5-10 years.     Especially on the tough days, we hang on to the slightest sliver of hope that some clinical trial is going to show significant positive results in stopping the disease or even maybe reversing it.     Even when a trial shows some good results, it takes many years to get through the clinical trial process and get through the FDA approval.     As a person with PD, I understand and appreciate the need for stringen
Recent posts

Attitude is Everything

I was never much of an athlete so when I found out that I had to exercise to stay well with Parkinson's, I was dismayed. Sweat and I never got along and still don't. Why can't Parkinson's be beat by eating M & M's? That sounds like much more fun. When I realized what a difference exercise made in my quality of life, I was sold. Intense exercise had to be part of my life like it or not. In fact, it helped so much that I wanted to help others realize it, and I got certified to help coach at the gym. I was feeling like a bad ass and that attitude has served me well.  My Parkinson's has progressed over the past seven and a half years, although slowly, and some days can be pretty rough. I still find that calling out that bad ass chick inside me helps get through the tough times. I may have many more years to deal with Parkinson's so I hope that bad ass chick sticks around. My dear, sweet husband made this design and put it on a shirt for me. It is my reminder

Throwing Spaghetti at the Wall

 Do you find that your conversations with friends are dominated by medical complaints, queries, and experiences?  The older I get, the more frequent the medical topics arise.  Even when someone in the group points out that our maladies are monopolizing the conversation, and we switch to our latest book club pick or Netflix binge, the talk seems to drift back to healthcare.  The latest bestseller is hands down more interesting than the latest suggestion to help constipation, kidney stones, neuropathy, fatigue...the list could go on forever.  I venture to guess that if our health issues were easily solved, there wouldn't be a reason for so much discussion.   But as so many of us know, many illnesses have no clear resolution.  Our doctors recommend different treatments hoping that something will help. They want to help, but even some admit, it really is "practicing" medicine in the truest sense of the word.   I liken it to  throwing spaghetti at the wall to see what sticks.

Diagnosing with Compassion and Hope

  My hackles are raised, my feathers are ruffled, my … I’m not sure I can find the words for how I am feeling.   This morning, I read a recently published article called “ Delivering the diagnosis of Parkinson’s disease-setting the stage with hope and compassion.”   I am not upset that the article was written.     I am glad that the authors have brought this to the attention of others. I am upset that it needed to be written.     I just think it is common sense that when someone is given a life-changing diagnosis, it should be given with hope and compassion.     The authors note that some say the moment of diagnosis is “almost akin to a traumatic event such as the loss of a loved one.” Of course it is!     The person receiving the diagnosis is losing their future self.     Everything they thought their life would be from that moment on has now drastically changed! I would count that as traumatic.       I was one of these people over seven years ago who walked out of the Movement Disord

Birds of a Feather

The saying, "Birds of a feather flock together,"  dates back to at least the mid-16th century.  In nature, birds are known to stick together in groups with their own feathered kind for protection.  There is safety in numbers.  Larger flocks are safer from predators.  The saying has come to mean that people with similar likes, tend to band together.  As a society, we form many different groups based on similar interests or qualities.   I find the saying to be relevant also in the Parkinson's community and I am sure it is true for other conditions as well.  I am more comfortable hanging out with others who have Parkinson's.  They get it.  No one else truly understands what it is like to live with Parkinson's except those living with it.  Care partners probably come the closest to understanding what it is like, but they also have their own flock. One doesn't truly know what it is like to care daily for someone with Parkinson's unless you have done it.   So do

Missing Tom

I recently lost a good friend. Never would I have imagined that I would become such good buddies with a man old enough to be my dad. I met Tom over seven years ago in a Rock Steady Boxing class. I entered class as a shy, teary-eyed, newly diagnosed mess who didn't like to sweat and had never boxed. Tom quickly took me under his wing, introduced me to the movers and shakers in the local Parkinson's community and eventually recognized a potential in me to further help the community. Within a year, with the encouragement of Tom and others, I became a certified Rock Steady coach. Tom and I would go to the same conferences and seek out the newly diagnosed. Ever the salesman, Tom would ask me if I "closed the deal," meaning, did I convince someone to come to an exercise class or attend a support group. Tom knew the benefits of attending these groups and he wanted everyone else to know also. He just wanted everyone to live the best life possible, even while living

Ugh...time to change the time... again!

We moved the clocks back a few days ago which means we all got an extra hour of sleep and yet...I am wiped out. My meds schedule is off, my sleep is horrible and tonight I almost went to bed at 7pm thinking it was about 9:30. Does this happen to everyone? This happens every year for me and it takes a week or two to adjust. In time, I get used to it getting darker earlier and my mood jumps at the promise of cooler temperatures ahead. And before you know it...it will be spring, flowers will be blooming, temps will be rising... and it will be time to change the time again.