Skip to main content

Favorite Resources

 


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.

Contributors to the manual include not only world renowned specialists but also the real experts... people living with Parkinson's. Because life with PD can change daily, I find myself referring back to this manual often. When a new symptom arises or I want to know how someone else has handled an issue, I can usually find the answer here. Recently the Davis Phinney Foundation has published a similar manual for care partners. I highly recommend keeping these manuals on hand. The Davis Phinney website is also full of great information.

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.

Comments

Popular posts from this blog

Self Advocacy in a World of Red Tape

In a perfect world, a person with an illness or a disability would easily be able to get needed services and treatments. We do not live in a perfect world and often the healthcare system is littered with red tape. Patients or their care partners are tasked with jumping through hoops, waiting countless hours on hold with pharmacies or insurance companies, and waiting months to see specialists. I wish I had the solution to this problem but unfortunately, I only see it getting worse. You need to be an advocate for yourself.   Here’s what has helped me: ·        Be persistent, be firm and be polite.  ·        Call often.  A squeaky wheel gets attention. ·        Stay on hold.  It is frustrating but sometimes it is the only way. ·        If someone doesn’t have the answer you need, ask to speak with someone who does.  ·   ...

Medication Pumps for the Trend Setters

I jest.  You have to keep a sense of humor when you are living with a condition like Parkinson's.  I am actually very thankful for new treatments even if they aren't pink and pretty.

The True Meaning of Community

  Anytime PMD Alliance comes to town, I am happy to jump in and help.  I have been an ambassador for them for over 7 years now. Recently, Parkinson's Orange County (POC) partnered with PMD Alliance for a Community Connection event hosted at Capriana Senior Living in Brea.  The event included a networking reception on Friday evening, followed by a full day workshop on Saturday.  Not wanting to travel back and forth from South OC, my husband, Jeff, and I stayed the night in a local hotel.  The weekend started out great at Friday's reception.  I was back at my hotel and in bed early so I could be back at Capriana in the morning with plenty of time to unload my car and get our vendor table set up.  Since I was staying in Brea, I had assured Erin Angelo, POC's Executive Director, that I could get there before her, so I had all our supplies in my car.   As many of you know, Parkinson's often throws a wrench into the best laid plans, I woke up on Saturda...