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SoCal Ride for Parkinson’s

The So Cal Ride for Parkinson’s mission is to increase awareness of the Parkinson’s condition in the greater Southern California community and raise research funds on behalf of the Michael J. Fox Foundation. This will be accomplished by hosting an annual biking/walking/running event that supports well-being and fellowship with all participants.

Please direct any inquiries regarding participation or donation to Bob Lear (949) 500-3024, Brian McGuire (714) 697-7963, Marty Furman (714) 624-7560, Brad Pierce (310) 261-1669, Fred DiLuizio (714) 349-6467 or Eliot Dratch (949) 304-8804 or visit our website: socalride.net

Reflecting on 2020

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.

Silver Linings
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.

Beyond 2021

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.”

North OC Parkinson’s Support Group

Hosted by the Professional Nurse Partners. This month’s guest speaker is Autumn Naranjo who will be discussing nutrition and Parkinson’s.   This group is meeting virtually the first Wednesday of the month at 4:30 PST

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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.

Communication Challenges with Parkinson’s and in Quarantine

by Lauren Simmons

Communication can be challenging for people with Parkinson's.  Hearing loss, masked expressions and soft voices can make things difficult. Our recent rules of 6-foot social distancing and wearing masks only compound the problem. At a recent venture to the grocery store, I realized how difficult it was to communicate in my usual way.  I no longer knew what someone meant when they stopped and nodded to me.  I couldn’t see their whole face.  Were they pausing to let me go in front of them?  Were they warning me not to get too close?  Were they smiling or grimacing? Likewise, others couldn’t see my facial expressions.   Here are some things to keep in mind and maybe help you communicate more easily.

Did you know that 70% of communication is non-verbal?  This includes body movement and orientation, hand gestures, vocal intonation, eye contact and facial expressions.  All of this is more difficult to interpret from a distance and from behind a mask. Now is a great time to bump up your verbal skills by working on speaking louder and with intent.  Singing and vocal exercises help a lot. Don’t let the stay at home order deter you. There are online programs to help you out.  Try joining a group like the Tremble Clefs or the Parkinson’s Voice Project.

Keep in mind, if people had trouble hearing you before, they will have even more trouble when your voice is muffled behind a mask.    You are likely to have more difficulty hearing them also. Don’t hesitate to ask someone to repeat themselves.  They may not realize how muffled their voice is behind the mask.  They won’t mind repeating themselves especially if you ask nicely.

Wait to talk until there are no distractions.  If the pharmacy clerk has his back turned or is there is an announcement going on overhead, it will be harder for them to hear you and for you to hear their answer. This is good practice at home also.  Instead of calling to your spouse from the other room, walk in and get their attention before speaking.   Be cognizant of background noises that may interfere like the dishwasher running or the T.V. being on.

Many of us are communicating over the computer these days using programs like Zoom, Google Groups, or Microsoft Teams.    There are a few things you can do to make communicating easier on both ends of the conversation.

If possible, use your computer as opposed to an iPad or phone.  The screen will be bigger and it will be easier to see the speaker.  We all do a bit of lip reading even if our hearing is perfect.  To make it easier for others to see your face, make sure you are sitting with good light on your face.  Also, if you’re the lipstick wearing type, put some lipstick on.  The contrast of your lips makes it easier for others to read your lips.

Using a headset that has a microphone or Airpods, will make your voice louder and clearer to those listening.  This is especially helpful if you have a soft voice.

If you wear hearing aids, find out if they have a blue tooth feature.  Using this feature can take the speaker’s voice right to you hearing aids.

Although not everyone with Parkinson’s, is a senior, the majority are. One third of people over age 65 have some hearing loss and this prevalence is even higher in seniors with PD.  It is a good practice to see an audiologist annually to get a hearing test and since so much of our communication is visual, it is a good idea to have an annual eye exam and make sure your prescription is up to date.

Happy communicating and may we all be able to see each other’s smiles in person soon!

 

 

 

Staying Connected at Home

We at PD Buzz want you to keep moving and stay connected to your Parkinson's community during Covid-19  while staying safe at home. Here are some ideas to get you through until things settle down and get back to normal. Check back here often as we will update this page with new information and ideas. We will be updating PD Buzz's  Facebook and Instagram pages often with new information and helpful hints and we would love to hear what you are doing at this time to stay connected and active.   Comment below to let us know how it's all going.

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, swallowing and breathing stay strong 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.

Claire McLean at Rogue PT Offers New Online Subscription Program: Rogue in Motion

Claire has been offering in person classes for people with Parkinson's for over five years. She is now offering online memberships.   There couldn't be a better time for this to happen since we are stuck at home right now.  Staying home is no excuse to skip your exercise.

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.

South O.C. Support Group Online Meetings

The South O.C. Support Group is holding its meetings online using Zoom.  All are welcome to join.  Click the button to email for more info.

Rx Ballroom Dancing

Our favorite dance teacher, Erin Angelo, is offering line dancing classes on Mondays, Wednesdays, and Fridays from 11:30-12:00.

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

Anissa Mitchell LCSW, is running three online support groups each week.  Tuesdays at 2:30 Pacific Time is for anyone (register here).  Thursdays at 2:30 Pacific Time is for care partners (register here) and Fridays at 2:30 Pacific Time is for those with a loved one in a care facility (register here).  Chat with your peers, ask questions and stay connected.  No one should be alone during this time.

Parkinson Place

Although the Parkinson Place is located in Florida, they currently have many resources available online from exercise classes to support groups and educational events.  You have to sign up to be a member but it is free to anyone with Parkinson's and their caregivers.

Online Webinars

There are many webinars happening daily.  Click here for a current list. Most webinars are using Zoom.  For help using Zoom click here.  The Parkinson and Movement Disorder Alliance is holding Tech Connect help sessions on a regular basis.  You can check their schedule here. 

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

PMD Alliance Club Hub Photography Group- all skill levels welcome

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

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

Virtual Classes offered by The Susi Q Senior Center - from Bingo to Music Appreciation, there are lots of classes to choose from

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