Rock Steady Fighter

  We had a very rainy, cool winter in SoCal this year. So much so, that I was getting a little tired of the rain and gloom. But I knew this would happen...summer strikes, we get temps in the 80's and 90's and I melt. Temperature extremes are a real bugger to deal with when you have Parkinson's. I hydrate, use cooling towels, even wear a personal fan at times and yet...I sweat. If you need to find me before October, I will be hanging out in the A/C somewhere.  #parkinsons   #dailyridewithpd #parkinsonsdisease

  Today brought us another exciting headline: "Scientists Discover Drug Already Approved by FDA May Slow or Stop Parkinson's."  Yippee, Yahoo, right? The reality is that it has only been tested in mice and "there is more research to be done." The research results will likely be many years away. I already feel like a lab rat using the current medications and treatments as doctors often admit, "we don't really know how it works." How do we speed up the research process? Too many people are suffering while waiting for treatments to get approved.   #parkinsonsresearch   #parkinsons   #scientificresearch #labrats   #frustratedmouse

                      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

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

 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