by The Parkinson Alliance | Mar 16, 2016 | Inspirational
By Margaret Tuchman, President of The Parkinson Alliance and a person with Parkinson’s disease formally diagnosed over 35 years ago.
I am a regular watcher of TED, a platform for sharing ideas and sparking conversation. Recently I watched two talks that left me hopeful and grateful.
The first is from Jocelyn Bloch, a “functional neurosurgeon” who works to improve neurological function through different surgical strategies. Her talk is entitled, “The brain may be able to repair itself — with help.” When I started watching, I was surprised to hear her mention deep brain stimulation and how it has improved neurological function and thus the destiny of people with Parkinson’s. Her dream, however, is to go beyond the neuromodulation that DBS offers and into the realm of neuro-repair. Her journey started some 15 years ago when she worked in an emergency room as a chief resident and treated patients with severe head trauma. It was from that experience that she and a colleague began experimenting with cells from pieces of brains. These experiments are proving that, with a little help, it just may be possible for the brain to one day repair itself. It’s a fascinating under twelve minute talk that I encourage you to view.
The second is from monk and interfaith scholar David Steindle-Rast. His talk entitled, “Want to be happy? Be grateful,” suggests that happiness is born from gratitude. He tells us that the most valuable thing we are given is this moment, and that every moment is a new gift, and we get this gift over and over again. He gently encourages us to remember what we were told as children: Stop. Look. Go. By slowing down, looking, and understanding where you are are, he describes how we can learn to find gratitude in the ordinary and from that gratitude a sense of happiness in the now.
As a person with Parkinson’s, I found this 15 minute talk an excellent pick-me-up.
You can view it below.
What TED talks have you enjoyed? I look forward to hearing from you.
by The Parkinson Alliance | Mar 9, 2016 | Nutrition
By Margaret Tuchman, President of The Parkinson Alliance and a person with Parkinson’s who also had DBS surgery.
We recently asked persons with Parkinson’s (PWP) to take our survey entitled, Nutrition in Parkinson’s Disease: A Closer Look from the Patient’s Perspective. Our goal was to find out what PWP think about how nutrition affects their PD and what, if anything, they do about their daily nutrition. Nearly 1,500 PWP participated in the survey and many also submitted comments. The survey report is now available, and it clearly shows that the vast majority of PWP believe that diet and nutrition are important in managing their PD symptoms.
“My husband has eaten healthy all of his adult life. I think it makes a real difference in the slow progression of his PD. … Doctors need to refer PD patients to Registered Dietitians as soon as they are diagnosed and have regular check-ins every year or so. Screening for malnutrition and medication interactions is especially important. Registered Dietitians are very underutilized in the care of people with PD.”
Interesting to note, however, is that almost half of the survey participants perceive themselves as not eating healthy most of the time. Additionally, very few PWP have been educated about nutrition or recommended to follow a specific diet. One participant commented, “I desperately need help with my daily meals. I went to a nutritionist who gave me general recommendations; i.e., eat more fish, nuts. … But I need some simple, practical, and everyday recommendations.” While I responded directly to this individual, I also want to share that information here. Kathryn Holden, MS, RD, is a Gerontological Nutritionist and Registered Dietitian who also helped design our survey and review our manuscript. She wrote a book called Nutrition Matters. The 72 page book is available as a free download from the National Parkinson Foundation website here. It includes recipes, like blackberry peach cooler and skillet breakfast solo, suggested meal and snack plans, and other very useful information.
The survey also addresses vitamins and supplements. For example, our survey reports that taking the spice turmeric and drinking tonic water can help to ease muscle cramping. Another participant told us that her doctor attributed her pain and frequent falls to her Parkinson’s. However, because she was persistent in asking questions and had more testing, she eventually learned that she had low potassium and vitamin B levels. She wrote, “Since addressing that with supplements, my life changed. … Supplements made a difference.”
While not every PWP believes a nutritious diet will have any affect on PD, the evidence and comments we received state otherwise. “When I eat healthy, I feel so much better and my symptoms are so much better.”
There is a bidirectional relationship between nutrition in Parkinson’s. Nutrition can impact the metabolism of medications used to treat PD, and PD symptoms and/or medications can impact your nutrition and dietary habits. Our survey report provides information on how to get a holistic and united approach to addressing your individual nutritional needs as it relates to your Parkinson’s. I encourage you to download and read it. Talk to your doctors and caregivers about this matter. While good nutrition cannot cure PD, it can help towards a better quality of life.
Download the free PDF from our DBS4PD.org website here.
by The Parkinson Alliance | Mar 2, 2016 | Team Parkinson
By Edna Ball, Team Parkinson
Team Parkinson had a great time on race weekend! We started with the traditional setting up of our booth at the Los Angeles Convention Center on Thursday afternoon. Now we were ready to go!
The Expo opened on Friday morning and we eagerly greeted our participants who came by the booth to pick up their TP t-shirts. We also had the pleasure of having our booth sponsors, join us as well.
Early on Saturday morning we headed to Dodger Stadium for our participation in the LA Big 5K. TP fielded a team of over 70 runners and walkers, all smiles in their beautiful blue TP t-shirts. It was a gorgeous, sunny day and all our starters finished as well. Special kudos go to Phil Miller, Eddie Schindler, John MacDougal and Debbie Jew for walking over the finish line upright and proud. And congratulations to all our 5K participants from Sarah’s 5K Training Team and our START support group. Thank you Sarah Ingersoll and Steve Mackel for leading the troops again! It’s so inspiring to see so many who are living with Parkinson’s disease (PD), work so hard to stay fit and thereby improve the quality of their lives. Wear your medals with great pride!
On Saturday evening we hosted our traditional carbo loading dinner at Taix French Restaurant. Over 80 people enjoyed an inspiring evening of speakers and camaraderie. Carol Walton made the initial introductions. Dr. Gal Bitan gave us a very hope filled update on his research that Team Parkinson is helping to fund. Dr. Jeffrey Wertheimer and Didi Matthews gave an excellent presentation on all the positive things one can do both physically and mentally to improve one’s quality of life with PD. Much of their advice focused on community, and this group at dinner was a glowing example of how involvement in community is so beneficial. John Ball spoke about all the support we get every day from those in our lives and thanked his personal ‘team’ that keep him going. Edna Ball thanked those who worked so hard for this event to come off without a hitch, including Susan Saxonberg, our dinner coordinator and Lee Stacy of Norm Reeves Honda for sponsoring the evening. Carol Walton reminded everyone to please read up on the latest research we fund by checking the Parkinson Alliance website. And lastly Steve Mackel gave some advice to Sunday’s marathoners and relay runners about running in the heat that was expected. It was a great evening!
Sunday morning saw the runners meet bright and early at Dodger Stadium or at the transition zone for the 2nd-leg relay runners. Although the course was hot in some parts, for the most part it was cooler than predicted and at the finish line in Santa Monica it was foggy and chilly. We set up our cheering area at Ocean and Alta but didn’t need the sun canopy at all. It was thrilling to see the elite runners whiz by as we waited for our own heroes. And it was exciting and gratifying to see our own approach the finish line as well.
And so we wrap up another year as an official charity of the marathon. So far we’ve raised over $67,000 and counting. This campaign will stay open until March 31st, so please continue to fundraise. Take a selfie of you and your medal and let everyone know what a great accomplishment this is. When you post on social media, remember to include @teamp4acure on twitter and Instagram.
There are too many people to thank individually for the success of the weekend. We do however want to single out Carol Walton and Terri Hamran of The Parkinson Alliance and Nessa Weinman as well for putting the long hours at the Expo.
Please continue to check our website at www.team-parkinson.org for the most up-to-date total number of donations. And please continue to spread the message of our mission to raise awareness of PD, to improve the quality of life of those living with PD through exercise and to raise funds for research!
All photos from our race weekend are now on our Shutterfly site, where you can download and print them. Check out photos from the 5K race, our Carbo Dinner, and Marathon day. Thanks again to everyone for sending us your snapshots!
Thanks for all your continued support!
