All posts by Joanne Bernard

COVID-19 Pandemic

Parkinson Society Southwestern Ontario (PSSO) hopes that this communication finds you safe and healthy. The pandemic has meant many changes to us all in such a very short period of time.

Since closing our office in March, it is hard to believe that the summer is here and passing quickly. We wanted to provide you with an update as to how we are moving forward with the continuing pandemic.

After establishing and implementing enhanced healthy and safety protocols for a responsible and safe re-opening, PSSO is now open and staff are back working in the office.  That being said, for your safety and ours, we do continue to maintain a closed building. Protocols are in place for face-to-face meetings within our office, should they be required. Please let us know If you would like to visit the office, and we will provide requirements established for a safe environment for everyone.

Most important to Parkinson Society Southwestern Ontario is the health and safety of our clients, volunteers and staff team. As we get back to business as usual in our “new normal” environment, we are continuing to suspend all in-person group meetings, support groups, exercise groups etc for the foreseeable future; or until it is safe to do so. This is out of an abundance of caution and the need to keep everyone safe. Thank you for your understanding.

If you would like to keep informed of all virtual meetings happening throughout Southwestern Ontario, please request to be signed up for our weekly e-news by emailing [email protected].

If you have any questions or concerns, please do not hesitate to reach out to us and we will do our best to assist.

We’re here for YOU!

Sincerely,

Shelley Rivard, CEO

What does it take to maintain STRONG CLEAR speech in Parkinson’s?

The research is clear that EXERCISE is one of the most powerful treatments for Parkinson’s. This applies to VOICE and SPEECH exercise as well!

Daily, Parkinson’s specific speech and voice exercises can help slow the decline of speech, voice and swallowing issues. So what do the experts recommend? A minimum of 20 minutes daily of speech exercises including:

  • Breathing Exercises – practice deep belly breaths to
    safely power louder speech
  • Vocal Amplitude Exercises (long, loud sustained vowels
    such as AHHHH, OHHHHH, EEEEEEE, OOOOO)
  • Pitch Exercises (gliding up and down on vowels,
    sirening, singing, humming)
  • Articulation Exercises – exaggerating mouth
    movements when speaking i.e. on tongue twisters or
    when reading aloud
  • Facial Exercises to fight against facial masking
  • Cognitive/Linguistic Exercises to help maintain word
    retrieval skills and mental acuity

REMEMBER … the key is to make every exercise you do BIG and EXAGGERATED. Parkinson’s is the disease of LOW AMPLITUDE. It makes you FEEL like you’re making big steps, big arm swing, big voice … but it’s tricking you!

Take home message: When doing your speech and voice exercises … think BIG!

Click here for: SPEAK OUT!® Parkinson’s Speech & Voice Exercises – MAKE SOME NOISE!

Click here for more recordings

Sarah Awde, M.Cl.Sc., Reg.CASLPO
Speech-Language Pathologist

The Canadian Open Parkinson Network (C-OPN)

We would like to share with you some exciting news: the launch of the Canadian Open Parkinson Network (C-OPN). This is a pan-Canada initiative bridging people, data and resources to accelerate discoveries in Parkinson’s disease. This project enabled the creation of three distinct infrastructures:

1. National Patient Registry: linking potential research participants to scientists across Canada conducting research studies and clinical trials

2. De-identified Database: capturing demographic, medical and cognitive patient information over time as well as brain imaging data to support cutting edge scientific investigations

3. Biobank: collecting biological specimen (e.g., blood) and storing them in a research biobank to enable genetic and other scientific analyses

To learn more information about the network click the following link that will take you to the C-OPN website. If you are a Canadian living with Parkinson’s disease or Parkinson Plus Syndrome, and you are interested in participating click the following link

WALK THE BLOCK for Parkinson’s – Getting Started

Right now, coming together looks very different. COVID-19 has changed our world as we know it, but the needs of people living with Parkinson’s have not disappeared.  

The walk is going to look different. This year, what used to be Walk-It for Parkinson’s has now become “WALK THE BLOCK for Parkinson’s” for 2020.

First Step:

  • Once you register, donate to yourself first! When your friends, family and co-workers see your commitment, they will know how important this is to you and will support you too!
  • Sometimes it is more convenient to fundraise in person (where possible). Pledge forms are available online at walktheblock.ca or by calling 1-888-851-7376.

 

Asking for Donations:

We understand that COVID19 has impacted people in various ways and that you may have reservations asking for donations. We are all feeling the financial fears and burdens at this time. We recognize that continued support comes in all different ways. Don’t forget, people donate and show their support because they care about YOU and they care about YOUR cause, YOUR fight, YOUR passion. This year, more than ever before, it’s up to YOU to show your community that you walk to support the fight against Parkinson’s Disease.

  • Let donors know who you’re walking your block for this September by updating your photo and story on your personal page. This will help your supporters see the value of their donation. Remember, they are donating because they care about YOU and your connection to Parkinson’s.
  • Include a message about the walk with a link to your personal donation page in your email signature
  • Start a family, friends and co-workers challenge by asking 10 people to each ask 10 other people to give a gift of $10, this can easily add up to $1,000 total!
  • Technology isn’t always our best friend, but did you know that the average online donation in 2018 was $147. Online giving is fast, easy and secure!
  • Ask your workplace to support your walk! Consider asking them for a corporate sponsorship or allowing a dress down day where all donations collected are donated to your walk! Some employers even have a program where they will match donations made. Check with your HR department! If none of those work, consider asking your workplace to put in a team to the walk! Invite your co-workers to walk as part of your team not physically but together in Spirit! They can all walk their blocks!
  • Share the link to your personal page on social media! Make sure you share a little about why you’re walking!
  • Consider using social media to fundraise for your walk! On Facebook, create a post and from the three dots choose “Support Non-profit” then search for Parkinson Society Southwestern Ontario. Tell people why you’re looking for support and click “post”. Then, just send us a quick email to let us know that you want the funds raised on Facebook to go towards your walk.
  • Physical distancing means that we might have to skip our family reunions and BBQ’s, so in place of getting together, send a “missing you” email to your family. Update them on why you will be walking your block in September, and provide them a link to your personal donation page.
  • Create a fun challenge between family and friends! See who can be the best dressed or raise the most support or who can walk the farthest! You don’t have to walk together physically to still have fun!

WALK THE BLOCK for Parkinson’s

Right now, coming together looks very different. COVID-19 has changed our world as we know it, and as our leaders say, this time we are in is our new “normal” for the foreseeable future. The most important thing now is that we still find a way to be a support for one another.

The needs of people living with Parkinson’s have not disappeared.  This year, the walk is going to look different. This year, what used to be Walk-It for Parkinson’s has now become “WALK THE BLOCK for Parkinson’s” for 2020.

So, what will WALK THE BLOCK for Parkinson’s look like? You can still register online, in fact – we encourage you to!

 

We will kick off the weekend of September 12 & 13 together! 

Register Today at walktheblock.ca!

 

Click here for more information
Click here to learn about how you can become a walk volunteer

Don’t forget to find us on facebook and instagram to join in the conversation and stay up to date!

Parkinson’s Exercise Programs

Exercise – Keeping it Virtual.  With COVID-19 restrictions easing or being lifted, your health and safety continues to be our top priority. We ask that you hold off in attending in-person exercise programs for now.  We have compiled this list of virtual exercise programs to help you keep active:

Parkinson’s and Exercise Guide
Provided by Parkinson Society Southwestern Ontario
More …

Parkinson Association of Alberta (exercise and education)
Motivational Mondays More …
Webinar Wednesdays More …
Freestyle Friday More …

Cummings Virtual Learning
Boxing Interval Fitness & Vocal Training for Parkinson’s
More …

American Parkinson Disease Association
A variety of free online exercise programs including Tai Chi and Dance
More …

VON SMART Exercise Class Videos
Low, Moderate and High Exercise videos available
More …

Rock Steady Boxing
By Empire Muscle
Free online classes – Tuesdays, Thursdays and Saturdays
More …

Canada’s National Ballet School
Sharing Dance
More …

Fitness Fridays
Created by Joellyn Fox through Parkinson’s Foundation
More …

Parkinson’s Exercise Essentials Video
Developed by the Davis Phinney Foundation
More …

Parkinson Society British Columbia
Exercise Programs
More …

Message from Shelley Rivard, CEO

COVID-19, coronavirus, social distancing, self-isolation, wash your hands … words and phrases that are ringing daily in our ears.  Just like a diagnosis of Parkinson’s, these words have changed our world as we knew it.

Shelley Rivard, CEO

The last number of weeks have been extremely difficult as we grapple with the short and long term effects that COVID-19 is having and will have on each and everyone of you, and, on us as an organization. These unprecedented times have led us to make some difficult decisions including cancelling our April Living Well conferences, two of our major fundraisers, all in person meetings in order to follow health regulations, and most importantly, to keep all of you safe.  These times have challenged us on how we can remain supportive through a virtual world.

The most difficult decision came 2 weeks ago, to reduce our staff team through temporary layoffs. After an in-depth look at our budget and reducing expenses to bare bones, it was apparent that this next step was inevitable.

Over the last month, we have encouraged all of you to be “Unstoppable”.  At this time, we remind ourselves about the importance of us, remaining “Unstoppable” for all of you.  We have shared video stories during the month of April that demonstrated the grit and determination this community has. They have been a beacon of hope in a world that is changing at every turn.  Now, it’s our turn, to show you perseverance as we work to provide the programs and services you need to get you through this time of isolation and the feelings of anxiety, depression and loneliness that it brings.

In the days ahead, you will start to see the plans that we’ve put in place to support you, start to take shape. Things may not look like they once used to, but rest assured, we are here for you and will support you anyway we can. All of our decisions, all of our plans, all of the work we do day in and day out is shaped by you and for you. We may not be perfect, it may take some adjustment from all of us – but we know that we have the BEST community of people around us and that together, we’ll make it through this.

We want to hear from you. Please take a moment to click here and complete this short survey to let us know how we can best support you in the days ahead.

We are grateful for the gifts of time, talent and treasure that each of you so generously offer. Please, don’t stop. Don’t stop ensuring that your family member, living with Parkinson’s has access to share and connect with others experiencing similar situations through support groups. Don’t stop ensuring that carepartners can call us to turn for help. Don’t stop ensuring that someone, newly diagnosed and lost in the initial shock of a diagnosis, has a place to turn for hope. You make this work possible. You ensure support. Don’t stop volunteering your time, don’t stop sharing your skills and don’t stop giving. You make a Home for people living with Parkinson’s in our community.  To find out more about how we’re here for you and to donate click here.

We don’t know how long we will be in the current situation, but the one thing I can promise is that we are in this together and Hope is Close to Home!

Rock Steady Boxing Online!

Rock Steady Boxing at Empire Muscle offers fighters of all PD levels spirited group training by certified coaches at a spacious, clean, organized and handicap-accessible facility. 

Empire Muscle is currently offering Free online classes on Tuesday, Thursdays and Saturdays.  Click here for more information 

Counselling

Do You Need to Talk to Someone? Are you feeling isolated because of COVID-19 restrictions?  It’s always important to stay connected, and even more so when things are weighing on your mind.  If you are newly diagnosed Parkinson’s, need help sharing news with family and friends, are having relationship issues, are dealing with grief, loss, depression or anxiety, we are here for you. 

Parkinson Society Southwestern Ontario, through a partnership with King’s University College School of Social Work an affiliate of Western University, invites you to call for a free, confidential and non-judgemental counselling session offered by students under supervised social work practice.  Counselling will focus on supportive listening, identifying key concerns, processing issues and mutual goal-setting for positive change through a solution-focused model. 

Counselling is available during the month of May with our King’s student, Christine Loop. Some of you may have met her during recent Zoom support groups, or talked with her  while she has been making COVID-19 check-in calls.  Christine is in her 3rd year at King’s in the School of Social Work program.

You can schedule an appointment by calling 1-888-851-7376 or email [email protected].  Counselling is available by phone or virtual online meeting.