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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

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

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