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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
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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.

Out of My Mind...

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

Expect the Unexpected

When you (or your loved one) were first diagnosed with Parkinson’s, did anyone tell you that the future was going to be full of surprises? Like...poof...surprise, that medicine that worked just fine yesterday, has stopped working today but never fear, it may work again tomorrow. Or...surprise, your toes have taken on a mind of their own and are now dancing to their own tune. Not all the surprises are bad. Did anyone tell you that you might become part of a community full of resilient, caring, and determined warriors? Did you ever imagine that at your age...whatever that age might be, you would be stronger than you ever thought possible and would be spending hours a week in the gym and enjoying it? One thing for sure that Parkinson’s has taught me is to expect the unexpected. The only thing I can do to prepare for the unknown is to educate myself. By doing this, I am better equipped to handle whatever comes my way.

Life on the Dopacoaster

I have always had mixed feelings about rollercoasters. They thrill and excite with slow, climbing ascents to vistas with beautiful views at the top, and can be terrifying with steep and sudden dropoffs. There is very little time in-between the extreme highs and lows to enjoy a peaceful ride. I can't help but make a comparison to my journey with Parkinson's. I am fortunate that Carbidopa/Levodopa, the gold standard treatment for PD, works well for me. I swallow those little yellow gems with the anticipation that slowly my symptoms will go away leaving me with a peaceful trek through my day. Seven years ago, when I was diagnosed, the peaceful ride lasted a lot longer. My highs and lows were more like gentle, winding curves in the road with the occasional speed bump thrown in to trip me up. Today, the peaks and valleys have gotten steeper while the time to enjoy the view in-between has gotten shorter and shorter. I have tried to smooth out the ride with various combinations