Rock Steady Fighter

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.

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

  From the Michael J. Fox Foundation: “On July 28, 2022, the U.S. House of Representatives introduced the  first-ever legislation solely devoted to ending Parkinson’s disease . The National Plan to End Parkinson’s Act (H.R.8585) will go through the traditional congressional process and will need to be voted on by the House. In case you haven’t yet,   send an email asking your Representative to show their support by becoming a co-sponso r .” From Lauren at PD Buzz: This legislation is historic for the Parkinson's community and is the result of much work by the advocacy group at the Fox Foundation.  The letter is already written for you . It only takes a couple of minutes to add your information, personalize it and hit the send button. I am urging you all to help this pass by letting your representatives know this is important to you. Please share this information with friends and family and ask them to do the same. I know we all want to find better treatments and a cure for Parkinso

  This month's favorite resource is the  Aware in Care Kit  provided by the Parkinson's Foundation. The Aware in Care Kit is a hospital kit for people with Parkinson's. Unfortunately, many medical professionals in the hospital setting are not familiar enough with Parkinson's to understand the specific needs of a person living with PD. The Parkinson's Foundation notes that three out of four people with Parkinson's will not receive their medications on time when staying in the hospital and this can cause unnecessary complications. The kit contains fact sheets on the necessity of getting medications on time, a list of medications that may be contraindicated for people with Parkinson's, a Parkinson's ID bracelet, a hospital action plan and information for specific things like Duopa and DBS. It is recommended to keep a supply of your current medications in the bag to bring with you on any hospital stay. Medications must be current and in their original contai

  This month's favorite resource is  The New Parkinson's disease Treatment Book  by Dr. J. Eric Ahlskog. Dr. Ahlskog has more than 30 years of experience working with people with PD at the Mayo Clinic. His goal in writing this book is to educate patients so that they can partner with their doctors to get the best treatment. Unfortunately, in today's world, our time with our physicians is limited. By educating yourself, you can make the most of that time by knowing what questions to ask and what treatment options are available. This book will give you the general information, put in terms you can understand, so you and your physician can work out a treatment plan specific to you. If you just can't wait for next month to learn about other favorite resources, you can see Claire McLean of  Rogue PT & Wellness  and I discussing all our favorites  here .

  During our Jump Start seminar for those newly diagnosed, we discuss some of our favorite Parkinson's resources. There are some books and websites that provide clear, accurate information and are my “go to” places for the best information. Each month, we are going to be highlighting one of these resources as they are appropriate for everyone living with PD, not just those newly diagnosed. First up is the  Every Victory Counts   manual put out by the Davis Phinney Foundation. This is a free book that you can  download   at any time or  order online  and it will be mailed to you. Every Victory Counts  is a great jumping off point to get you started. You will find the basics about things like symptoms and medications mixed in with advice, tips, and worksheets to aid in daily living. There is also a great glossary in the back which can come in very handy especially when you are new to the PD world. Woven throughout the manual are stories that educate, inspire, and give hope. Contribut