Rock Steady Fighter

 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.

  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

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

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

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.

If you have been living with Parkinson's for a while, you are likely living at the mercy of Parkinson's medications. Don't get me wrong, I am thankful that medications are available. Without them, life would be miserable much of the time. But don't get me wrong (again), even with medication, you may feel like you are losing your mind. Early on, you take your meds on schedule, you can pretty much count on how long they will last and know what to avoid with them (protein maybe). As the years pass, and your symptoms progress, you would think you could either just, A. increase your meds or B. increase the frequency of your meds depending on what your doctor recommends. This seems logical to me. Sometimes this works, but eventually you end up with an E-ticket to the Dopacoaster. What is special about the Dopacoaster is that the tracks can change hour to hour. You took the ride yesterday and felt good. Life with PD was manageable. Today, you follow the same sche