Coach Nel and Coach Timi are a mother/daughter dynamic duo who run I Am Movement/Rock Steady Boxing Irvine. They went to Rock Steady Indianapolis to get trained, got all ready for their grand opening, and then...COVID. Need I say more? The global pandemic that shut down our world closed their doors but only temporarily. They have been offering virtual classes on Zoom and are now back in business at the gym although doing things differently than they anticipated. Small classes, distancing, and lots of disinfecting are now the norm. Check out their video above. You can find more information on their program here.
By Lauren Simmons and Tom Sheppard
We did it! We made it through 2020, and a new year has finally come. The beginning of the year is traditionally a time for resolutions, to set new goals, and form new habits. Given the last nine months, we think it might be time to go back to the basics. I often hear people say that they are going to make changes "one day." Let's turn it around and make those changes on DAY ONE.
Think SMART when making your resolutions. The SMART tool for meeting a resolution helps in doing the things needed to better our Parkinson's lives. Here are some tips for setting yourself up for success:
Make your resolution SPECIFIC instead of general:
General: "I'm going to be more social."
SPECIFIC: "I'm going to call a friend two times a week."
Answer your what, when, why, who, and where questions.
Make it MEASURABLE. The result has to be measured.
How do you keep track of your progress and know you have arrived?
Make your goal ACHIEVABLE. Working up to walking a few miles a day may be more attainable than planning to run a marathon by June. If you are already exercising, think about what you can do to step it up a notch. Think realistically about what your situation is right now, and then challenge yourself.
Is it RELEVANT? As a person with Parkinson's, what is relevant to maintaining our best health? What is important to you, and is this the right time?
TIME: set an "I did it" date.
Make a schedule. A schedule will help you make that target date. Are you planning to exercise three times a week? Choose the days and times and put them on your calendar. Want to learn a new skill? Mark off time on your calendar specifically for that activity.
START MOVING - IT'S DAY ONE
by Lauren Simmons
Forgive me for the lengthy post; when looking back at this year, I guess I have a lot to say.
When 2020 started, I was very excited about the things going on in the Parkinson’s community in Orange County. There were multiple support groups meeting every week and the number of fitness classes was growing from one end of the county to the other. Educational events and outings were filling our calendars. Our small group at PD Buzz was busy trying to reach people with PD and keep them connected to all that was happening.
And then came COVID and put a screeching halt to almost everything...at least for a little while. It didn’t take long for the leaders in the PD community worldwide to jump into action. Knowing how detrimental isolation and a sedimentary lifestyle can be for those with Parkinson’s, these professionals quickly adapted and started holding groups and classes online. We all learned a new meaning to the word “zoom.” Our living rooms and garages quickly became gyms and we welcomed support groups, specialists and doctors into our homes via the internet.
There are some silver linings to this pandemic. Telemedicine has been brought to the forefront and hopefully will continue long after the pandemic is over. Many of us, out of necessity, have overcome technical challenges and figured out how to stay in touch online. Hopefully many of us used our time at home wisely and took the opportunity to work on longstanding projects or to learn a new hobby or skill.
Being stuck at home has given me the time to expand my personal reach into the Parkinson’s community. I have used my time to learn more about web design and figure out better ways to connect people with PD to resources they need to live well. We have had some great accomplishments this past year. PD Buzz has grown and is now offering the same service to people with Parkinson’s in the greater Springfield, Illinois area. In April, we hosted a webinar with Dr. Ray Dorsey, co-author of the book, Ending Parkinson’s Disease. This past week, we partnered with Claire McLean at Rogue PT & Wellness for our first ever Jump Start seminar for those newly diagnosed. We have wanted a program like this in Orange County for years, and pandemic or not, we made it happen. Our recent partnership with the Parkinson’s Wellness Fund will enable us to reach even further. Together, we can connect more people with resources and help them live well today
Looking Forward to 2021
As I write this, the news is breaking about people throughout the country getting vaccinated. It will still take some time for the vaccines to get to everyone but I can see a light at the end of the tunnel. I pray that we will be singing “Happy days are here again” by the spring or summer. Until then, we need to maintain our safety protocols and wait a bit longer.
We still may have many months at home before things return to our new normal. I encourage you to keep moving. Exercise is medicine. You wouldn’t skip taking your medicine so please don’t neglect your training. If you haven’t been part of a group online yet, give it a try. On PDBuzz.com you can find online exercise classes, support groups, dancing classes, singing groups and more. I urge each of you to step outside your comfort zone and challenge yourself with something new.
Looking at the future of the Parkinson’s community is difficult to do without considering the past. It has been over 200 years, and we still have no cure. Although new treatments and medications are hitting the market, Parkinson’s continues to grow in the population. It is the fastest growing neurological disease. Something needs to change and change does not happen without action. On that note, I am asking each and every one of you to join the PD Avengers. There is power in numbers and by joining together, we can demand change in the Parkinson’s world. It is the goal of PD Avengers to unite 50 million voices to end Parkinson's. If you have PD, love someone with PD, care for someone with PD, are related to someone with PD, or know someone with PD, please join. It is not a charity. They will not ask for money. We need to stand together to build a sense of urgency to end Parkinson's.
“The PD Avengers are a global alliance of people with Parkinson’s, their partners and friends, standing together to demand change on how the disease is seen and treated…Our mandate is to use our combined effort, influence and skills to prove Parkinson’s matters and to build a sense of real urgency to end the disease.”
by Lauren Simmons
Can you believe it's November and the holiday season is upon us? Did any of you anticipate that you would still be hunkering down at home due to Covid? We may all be celebrating Thanksgiving differently than we expected but we can still be thankful for what we have. I think I have always been thankful for first responders, doctors, nurses, and emergency providers but this year, I am more mindful to thank the essential workers that are keeping life moving along. While some things like toilet paper and hand sanitizer may have been scarce, we were still able to get most necessities of daily living. That would not have happened without people willing to drive trucks and work in stores.
This year, I am especially thankful for the technology available so we can keep in touch with friends and even have medical visits right from home. I am thankful to the organizations that are keeping us educated and even entertained with webinars and Zoom meetings on a daily basis. I am thankful for the support group leaders who continue to check in and keep us connected by holding virtual meetings. I am thankful for the professionals who have spent hundreds of hours teaching online exercise classes so we can all stay as healthy as possible. I am thankful for the caregivers who have an added burden with Covid, sometimes being the only one that can safely go out and do errands and may be feeling isolated much more than before. And I am thankful for good health. I pray that you and your loved ones have stayed healthy through this crisis and will continue into the next year in good health. During this holiday season, don't forget to thank those who are helping make life a little easier right now.
by Ernie Atkins
Parkinson’s Disease (PD) is a progressive, degenerative neuromuscular disease. On its own, that description carries a ton of information that people with Parkinson’s (PWP) need to understand and accept.
Learning about PD equips you with the knowledge and awareness that will be instrumental in your life-long journey with this disease.
Expert information is the key to understanding your symptoms, expressing issues with your neurologist, and improving your quality of life as you battle PD.
Because expert knowledge is so empowering, PEP4U offers a weekly PD Education Hour. These free, online Zoom sessions occur bi-weekly on Fridays at 10 AM PT. Everyone is welcome, PWP and caregivers, from southern CA to Maine and beyond.
Past sessions have covered PD-specific concerns ranging from cognitive issues to the benefits of trekking with poles, from a study of anxiety and depression to the wonders of mindful meditation.
These Zoom sessions include resources (printed, webinars, discussions) from premier organizations, including the Davis Phinney Parkinson’s Foundation, Parkinson’s Disease Foundation, MJ Fox Foundation, and other professionals.
Join us next Friday at 10:00 AM PT. Use this Zoom link for all our live education hours. Listen, learn, contribute, and enjoy meeting new PWP. At PEP4U, we’re all in this together.
P.S. We archive all past sessions on the PEP4U website.
by Lauren Simmons
Four years ago, I was diagnosed with Parkinson's Disease. While reeling from my diagnosis and dealing with my symptoms, my family and I were left with the task of finding resources in my area to help me. I am fortunate that there were many classes, groups and specialists near my home but finding them was not so easy. It took hours of online research and phone calls. I needed someone else with Parkinson's to talk to and guide me and until I found that person, my Parkinson's journey was a maze of confusion. Fast forward a couple of years, and I was hearing from people frequently that they were having the same issue. The problem was not a lack of help but finding the help and finding it easily and quickly after diagnosis. This problem led to the founding of a new website, PDBuzz.com, which was a "one stop shop" for all things Parkinson's in my hometown, Orange County, California. It is a database of Parkinson's fitness classes, programs, services, support groups, specialists and events and we have started a peer program to give the person with PD or their care partner someone to talk to. With the support of the Parkinson's Wellness Fund and some dedicated friends, PDBuzz.com was launched in December of 2018. It is run by a group of people with Parkinson's helping people with Parkinson's.
A couple of months ago, I mentioned PD Buzz in a Zoom meeting full of women with Parkinson's. Shortly after the meeting, I was contacted by a couple of superhero PD Advocates, Candace Mueller and Kenna Diaz, who checked out PD Buzz and wanted the same thing for their town, Springfield, Illinois. Others have made the same request in the past and I always dismissed the idea because keeping the site updated for just Orange County was proving to be a daunting task and I am not a trained web person. I am learning as I go because I believe strongly that people with PD need to find resources as soon as possible after their diagnosis and I want that to be easier than it has been in the past. I want it to be easier than it was for me. Maybe it was the timing of this request from the ladies in Springfield that made me consider saying yes this time. I know it had something to do with a strong urging from Russell Meyerowitz at the Parkinson's Wellness Fund. When I told him about the requests to expand and said that I wasn't a web person and I didn't know how to do this, he said, "But you already are doing it and if you can help just one more person with Parkinson's tomorrow, then you are successful." He got me right there.
Things fell into place after that. A couple of us from PD Buzz in Orange County met virtually with the ladies in Springfield and got the process started. They were able to collect the information on their local Parkinson's resources and pass it along to a family member who works in web development and as they say, the rest is history. Recently, we added PD Buzz Springfield to our website. It is exciting to think that we are helping more people with Parkinson's and who knows, maybe we will be growing more in the future. It may be a slow process but as my friend Russell said, you just have to help one more person with Parkinson's tomorrow. I think we can do that.
People with Parkinson's in North Orange County have been asking for a Rock Steady Boxing location near them for years. Connie Anderson made their wishes come true by opening a Rock Steady in Anaheim, Ca. Connie's boxers will tell you that their group is like family and will attest to the fact that exercise is helping them stay well. During Covid, Connie has taken her classes online so that her fighters can continue exercising at home. Their classes whether in person or online are always full of laughter. You can also find Connie running the Capriana Warriors Parkinson's support group which is also meeting virtually during the pandemic. For more information on Connie's group, you can reach her at firstname.lastname@example.org.
PEP4U is a Parkinson's specific fitness program in Orange County, California. They offer exercise classes led by professional instructors trained in Parkinson's Disease exercise promoting balance, coordination, strength, and overall movement. Their classes include yoga, PWR Moves, strength and cardio classes, multitasking and cognition classes, and shadow boxing. Best of all, it is all free. PEP4U is a non-profit organization supported by donations.
Typically, you can find this great group getting fit at the YMCA in Laguna Niguel. Due to the pandemic, they have taken their classes online. You can participate in live online classes or choose a recorded class to do on your own schedule. You can find more information on the PEP4U site.
Donna Clervi is a certified Rock Steady Boxing coach in South Orange County, California. When you meet Donna, one of the first things you will notice is her passion for helping others. She is tough on the outside and will make you work your hardest but on the inside, she has a heart of gold. She truly wants her fighters to succeed in living their best life with Parkinson's. She sets high standards for her boxers and then shows them how to help themselves in slowing Parkinson’s progression.
Donna comes to Rock Steady Boxing M.E. Fitness after more than 30 years in the healthcare industry. Along with being a coach for people with Parkinson's, Donna facilitates the South Orange County Parkinson's Support Group and runs the Donna Clervi Foundation which supports, encourages, and trains people living with Parkinson's. Those who have worked with Donna in efforts to help the community would say she sets the gold standard for volunteers. She is a professional who has brought a lifetime of hard work and decision making to the local Parkinson's organizations she works with.
You can contact Donna at DonnaClerviFoundation.org or email@example.com