Rock Steady Fighter

  As I inch closer to the eight-year anniversary of my diagnosis, it becomes clearer every day. If I want to continue to live well with Parkinson's, I must work intentionally at it. I need to figure out (with the help of my care team) what is needed and then do it. That might mean going to speech therapy. It might mean switching up my workouts or adjusting my diet (again). It definitely means that I will have to do some things that I don't feel like doing and if I want to stay well, I will need to continue this for the rest of my life (unless of course a cure comes soon). I have seen the result of hard work in myself and in many, many friends. Those who are putting in the effort are doing better than those waiting for something to happen.  We have to make wellness happen and it is hard to do every day. That is one of the reasons I think it is so important to be part of a community of others with Parkinson's. They are the ones who understand and the ones that can kick you in

When you sleep straight through the night, you would think it would be nothing but a good thing. Parkinson's is selfish and can't just let a good thing be good. Going that long without meds makes for a morning of tight muscles, curling toes and tremors to set off the richter scale. Don't worry, once your meds kick in, you will feel better but your meds schedule is blown for the day along with your eating schedule because you slept through breakfast also so who knows what Mr PD has planned for the rest of the day. Hopefully you like surprises!   #parkinsons   #parkinsonsdisease   #movementdisorder #parkinsonsawareness   #parkinsonsblog  

  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