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.
Tony Garrett is the owner of Neurofit Boxing in Costa Mesa
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.
by Tom Sheppard
This took on real meaning for me a few days ago:
Melanoma is the deadliest form of skin cancer. In the early stages, Melanoma can be treated successfully with surgery alone, and survival rates are high, but after metastasis, survival rates drop significantly. Therefore, early and correct diagnosis is key for ensuring patients have the best possible prognosis. (From Cancer Biology and Therapy Journal)
GOOD NEWS – BAD NEWS
During a routine skin check, my dermatologist said there was a spot that she wanted to biopsy. Fine, I have heard that before and it was never a problem. A few days later, I got the get the call. The dermatologist said, “The results of the biopsy I did last week on your shoulder are back. I have good news and bad news. The bad news is, you have Melanoma, but the good news is, it is very small and we have discovered it early.”
The bad news was apparent to me, but the good not so much. After some research, the good news started to sound better. She caught it early and expected no more problems with that area. However, other spots could show up. The prescription for that is a skin check every three months.
A couple of days ago, I had surgery to remove the Melanoma. It was routine and took about an hour. The aftermath of the surgery is NO EXERCISE for two weeks. It was pretty clear that no compromise was forthcoming.
WHAT SCIENTISTS RESEARCH AND DOCTORS ARE FINDING
Studies suggest there might be a connection between Parkinson’s Disease and Melanoma. My dermatologist said there have been more melanoma cases in her office since the pandemic started in March. Her colleagues are reporting the same. She isn’t sure why. Also, she is seeing an increasing diagnosis of Melanoma in her Parkinson’s patients.
IF YOU HAVE PARKINSON’S, SEE A DERMATOLOGIST ANNUALLY!
Don’t count on your internist for a full head to toe skin check. The dermatologist I go to is very thorough. It’s a hide and seek
game and you want somebody trained in the field. I am asking you to make that skin check appointment now and keep it.
This is not the report I wanted to see but I would rather see it now than a year from now.
MAKE THE APPOINTMENT – SEE THE DOC
by Lauren Simmons
We are now into month five of Covid related lockdowns and restrictions. How are you doing with it? The doctors and scientists tell us to stay home to stay safe but we have also been taught that socialization and new activities are good for our brain, so what are we to do? Unfortunately, Parkinson's doesn't stop just because we are stuck at home. We still need to keep our bodies and brains active.
What is challenging you right now?
So what have been your biggest challenges during quarantine? Are you getting enough exercise? Missing hugs from grandchildren and friends? Did you have to cancel summer travel plans? This is definitely a challenging time and it may continue for a while so we need to do something to stay well physically, mentally, and socially. We challenge you to add one new activity this month. (We dare you to try two). Try a new online exercise class, or learn a new skill like painting or knitting. There are a multitude of instructional videos online. Maybe you can join an online bookclub or cook a new recipe each week. How about schedule an hour a day to walk a new trail or in a new park? You could learn a new card game. You can even play card games online. Maybe you could play them with those grandchildren you are missing.
It's time to take the challenge!
Check out some of the ideas below. When you talk to friends and they ask what you have been up to, dazzle them with your new interests and impress them with your enthusiasm. You can do this! Join us in stepping outside our comfort zone. Take the challenge! Don't forget to let us know what you are doing. Maybe some of us would like to try the same thing that you are trying. You can comment below or let us know on our Facebook page. Let's leave that comfort zone behind and get started.
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!
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 firstname.lastname@example.org.
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 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
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.
Reaching the Newly Diagnosed
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.
Written by Tom Sheppard and Lauren Simmons, advocates in the Orange County Parkinson's Community