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newly diagnosed

PD Buzz is honored to partner with Rogue PT & Wellness in Fountain Valley, CA to bring you a special event for those just starting their PD journey or not too far along into the journey.  Our day will feature presentations by Movement Disorder Neurologist, Dr. Mindy Bixby, Physical Therapist, Claire McLean and founder of PD Buzz, Lauren Simmons.  This is a great time to meet others with Parkinson’s and meet some of the Parkinson’s leaders in Orange County.

This is an in person event held at Rogue PT in Fountain Valley.  Registration for this event is limited.  If you have registered and are unable to attend, please contact us.

This program is sponsored in part by a community grant from the Parkinson’s Foundation.  We are grateful for the support they provide.  You can find out more about the Parkinson’s Foundation here.

June 26th 10:00-12:30 at Rogue PT & Wellness

18030 Magnolia

Fountain Valley, CA

 

One Day or Day One

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

PEP4U

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.

Find more information about building your care team.

Meet Donna Clervi

Rock Steady Boxing M.E. FitnessDonna 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 DonnaClervi.com or meboxing@rsbaffiliate.com

Find more information on building your care team.

Meet Erin Drake Angelo

Erin is the founder and owner of  RX Ballroom Dance. She provides dance therapy to people with Parkinson's all over Orange County. Inspired by a grandmother who struggled with Parkinson’s, Erin combined her professional dance skills and teaching background to create Rx Ballroom Dance. Their mission is to use ballroom dance to preserve and enhance the quality of life in people who are confronting neurological conditions. The program consists of weekly ballroom dance classes specifically designed to engage both the body and mind to alleviate symptoms of Parkinson’s. Using choreography to learn these dances also helps to stimulate brain activity and improve memory recall. For all participants, ballroom dance helps with: Parkinson's Dance Therapy

  • Physical coordination and balance
  • Mental stimulation and memory recall
  • Social and emotional states growth

When you meet Erin, you will quickly see that her enthusiasm is contagious.  She loves what she does and welcomes not just people with neurological problems but their caregivers and/or spouses as well. She is proud to tell you that all her classes are 100% free.  RX Ballroom Dance is funded completely through donations.

Due to the Covid pandemic, Rx Ballroom is currently offering online Zoom Classes as an alternative to in person classes so members can stay active and continue dancing. You can get more information at Rx Ballroom Dance or email Erin at info@rxballroomdance.com

Meet Tony Garrett

Tony Garrett Parkinson's TrainerTony Garrett  is a certified Rock Steady Boxing coach and a professional personal trainer. He has worked with the Rock Steady Boxing SC program, for the past 4 years at American Gym in Costa Mesa. There he worked with athletes in all stages of Parkinson's Disease.He also has additional professional training in: muay thai, boxing, kickboxing, and general strength and conditioning.
With his Rock Steady Boxing and personal training experience, his own boxing and muay thai background, he transitioned "Rock Steady Boxing SC" to "NeuroFit Boxing.” He has incorporated training methods that focus not just on the body, but on the brain.
He prides himself on being positive, supportive, and all about helping his athletes hit their fitness goals. Tony  “I would love to chat with you about how NeuroFit Boxing can benefit you, no matter where you are today.”  You can find out more about Tony at Neurofit Boxing.

Tony Garrett is the owner of Neurofit Boxing in Costa Mesa

Meet Claire McLean

Claire McLean PT, DPT, NCS has been serving people with Parkinson's in Orange County for more than ten years.  She is a physical therapist who specializes in Parkinson's and owner of Rogue PT and Wellness in Fountain Valley, California. Claire holds a doctorate in Physical Therapy from USC and did her neurologic residency through USC and Rancho Los Amigos.  On any given day, you may find Claire assessing patients one-on-one or running a variety of classes in her gym.  She is a PWR! Moves certified instructor and teaches not only people with Parkinson's but other therapists and  fitness professionals.  Claire is a firm believer in the concept of exercise is medicine and hard work paying off and you will not only see hard work in her classes but you will see people living well with PD and improving their quality of life on a daily basis. Claire doesn't just stop at exercise, she is often found teaching her clients about healthy eating for Parkinson's and talking at local support groups. Recently Rogue PT has launched a new online fitness program called Rogue in Motion.

Staying Connected at Home

Update:  July 2021

Although our country is opening back up following the Covid 19 Pandemic, some people may still want to access virtual groups and services from their home.  There are many options available to you below.

Online Parkinson's Exercise Programs

The Parkinson's exercise pros have really stepped up.  There are so many options available to you for working out at home.  You can really be working out with trainers from all over the world without leaving your home.

Tremble Clefs Online with Karen Skipper

Singing not only helps your voice,  but it is a great mood lifter and we can all use that.  Music therapist, Karen Skipper, of the O.C. Tremble Clefs is holding online sessions.  For information, please contact Karen at kmsmusic@cox.net.

Rogue in Motion Online PD Exercise and Wellness Classes

Claire has been offering in person classes for people with Parkinson's for over five years. She is now offering online memberships.   Rogue in Motion offers exercise classes, cooking classes, brain game classes and more.

Coach Me Strong

Coach Me Strong is a new one on one online exercise program that matches you up with a coach for a personalized program and an accountability partner.

Rx Ballroom Dancing

Our favorite dance teacher, Erin Angelo, is back in the studio but still offering virtual options.

Sunday Mornings with Twitchy Women

Sharon Krischer is bringing us together on Zoom every other Sunday morning at 10:00.  This fun group of women with PD is getting together for all different things, some Parkinson's related and some not.  Topics have included exercise, sketchbook journaling, drumming, and more.

PMD Alliance Live Online Support Groups and Webinars

The Parkinson and Movement Disorder Alliance offers many online support groups for people with Parkinson's, care partners, and family members.  They also offer live educational webinars and you can find a full library of recorded webinars on many subjects related to Parkinson's.

Long Beach Memorial Virtual Parkinson's Wellness Program

The MemorialCare Rehabilitation Institute at Long Beach Medical Center offers a Virtual Parkinson’s Wellness Program for people who are having difficulty moving, speaking and thinking due to Parkinson’s Disease or Parkinson’s-like symptoms.

This virtual class includes a screening to determine eligibility. Caregivers are encouraged to attend and assist loved ones as needed. This program is assisted by a community grant from the Parkinson’s Foundation.

AudAbility by MusicWorx

MusicWorx’s AudAbility(™) program helps people with Parkinson’s Disease to live out loud.We believe that living with Parkinson’s doesn’t have to be isolating or limiting. Through music therapy and wellness-based approaches, we empower individuals to cultivate a good quality of life.  Based in San Diego.

UCSD Support Group Network

Whether you have Parkinson's, are a care partner, or are young onset, UCSD has a group for you.  There are many virtual meetings scheduled per month. Check their schedule here.

Orange County Calendar of Events

Stay up to date on the support groups and other events that are now happening virtually.

Fun Things to Try from Home

AARP Games Online - puzzles, cards and brain games

Clock Yourself - This exercise app will challenge your body and brain. The app does cost $1.99 but well worth it.

The Daily Mini - Challenge your friends to a daily mini crossword and see who can do it the fastest.

Join a Virtual Book Club - 9 online clubs to choose from

Lumosity - This app is sure to challenge your memory and attention and gives your brain a daily workout.

Online Nightly Opera from the Met - a different opera every night

National Parks Virtual Tour - take in the scenery from home

Online Parkinson's Exercise Classes - classes of all levels

Qigong-Tai Chi - online or in the park - San Clemente

Take a Virtual Tour of the Louvre   - next best thing to being there

Virtual Travel Talk - missing travel?  Experience the world from home.

Words With Friends - If brain games are your thing, this might be for you.

Online Parkinson's Forums/ Support Groups Can Keep You Connected from Home

We know it isn't the same as meeting in person but if your support group isn't meeting right now, you may want to consider joining a private Facebook Group for PWP.  There are many out there.  Below are just a few. You could also start your own private group just for your support group.

Parkinson's Disease Fighters United (PDFU)

Strongher Women Fighting Parkinson's Disease

Parkinson's Warriors

South OC Parkinson's Group

Follow PD Buzz on Facebook and Instagram to get the latest updates

 

Reaching the Newly Diagnosed

Reaching the Newly Diagnosed

 

"You have Parkinson's. Here are your prescriptions for your medications, start an exercise program, and come back and see me in three months.”

That statement, or similar, from the doctor, is one that many newly diagnosed hear. There is often a gap between the doctor's medical advice at the time of diagnosis and additional information that might be helpful to the person receiving this news. So, where does the newly diagnosed person with Parkinson's (PWP) start to learn how to help themself? There is a lot of information available on the Internet, but it can be overwhelming, inaccurate, and sometimes scary. The newly diagnosed PWP should be able to access local resources to start living well with PD as soon as possible, but local resources can be challenging to find.

So where should the information come from? Should the doctors give out the info? Maybe. Probably. Yes. But do they have the time, the information, the inclination? Nevertheless, they are the team leader, and if they could give their PWP some guidance, it would help them get off to a better start. Maybe it could even help slow the progression. The Parkinson's community and most Movement Disorder Specialists agree that a vigorous exercise program slows the progress of Parkinson's, and it should be started as soon as possible after diagnosis. The newly diagnosed need guidance to do this. What kind of exercise, how often, what is available in their area? Is there a local support group? If I want to talk to someone with PD, what do I do?

Here in Orange County, the problem is not the lack of resources for PWP. It is getting the information about those resources to the people with Parkinson's on a timely basis. We regularly hear from people who were diagnosed months or sometimes even years ago, that they are just learning about what is available to them. People often go online first to the national organizations for information, and the national organizations typically aren't aware of all the local resources. PWP need to know what is available close to home. In Orange County, PDBUZZ.COM is an excellent place to start. It is the only all-encompassing OC Parkinson web site. It came into being because we hoped the medical community would guide their newly diagnosed and other patients to the website to get connected to the Parkinson's community close to home. It lists fitness classes, support groups, seminars, events, and support services like PT, OT, Speech Therapy, and counseling. Although PDBUZZ.COM is getting more popular, especially with those who are already involved with the Parkinson's community, we still are not reaching the newly diagnosed as we would like to.

So how can we quickly reach those just starting their journey with PD? This situation is not unique to Orange County. At the recent Parkinson's IQ+You event in Anaheim sponsored by the Fox Foundation, we heard from people all over southern California who didn't know what was available in their area. So the question remains, how do we reach those just diagnosed? We all must continue to work on a solution. If we work together as a community,  we will find the answer.
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Written by Tom Sheppard and Lauren Simmons, advocates in the Orange County Parkinson's Community