Category Archives: news

Shaking Hands

This chronicles the life of a man, short in stature but huge in spirit, who grows from rebellious youth to successful teacher and athlete, representing his country numerous times on the work athletic stage, risking life and limb in extreme mountain biking and getting a black belt in Karate in his forties. At forty-eight, the first signs of what were to be his greatest challenge for the next ten years, indeed for the rest of his life, showed themselves, setting off a decision to not sit back idly and let Parkinson’s disease defeat his warrior spirit.

Ride along as Nelson plans and executes his strategies to force back the onslaught of “The Darkness”.

Have no doubt, living with Parkinson’s and not succumbing to its degenerative nature requires nothing less than a total plan to ward off its far reaching effects.

Nelson summons allies to support him in his battles and chronicles his encounters with his heroes who strengthen him daily.

Nelson is selling Shaking Hands and Beyond Shaking Hands, both books together for $20.
To order Nelson’s books please email him directly at [email protected]
You will need to provide mailing address and payment is by etransfer.

Coffee Klatch

Coffee Klatch is back by popular demand on new day and time.

COFFEE KLATCH – MONDAYS @10AM

Have you ever wanted to meet other people from other areas around Southwestern Ontario? Now is your chance! Grab your favourite drink – hot or cold, and meet us online to connect with each other!

 Join us this Fall for “Coffee Klatch” fun! This is a German phrase to mean “a casual social gathering for coffee and conversation!”

Zoom details will be forwarded on to support group members through facilitators.  If you are not part of a current support group or didn’t receive Zoom link to join Coffee Klatch please contact [email protected].

Do you need someone to talk to?

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’re dealing with a new diagnosis of Parkinson’s disease, need help sharing news with family and friends, if you have 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 Western University Social Work program, invites you to call for FREE, short-term, confidential and non-judgemental counselling offered by social work student.   Counselling will focus on supportive listening, identifying key concerns, processing issues, and mutual goal-setting for positive change through a solution-focused model. 

Melissa Chamberlain is a 4th year student in the King’s Western University Social Work program.  Schedule your appointment with Melissa by calling 1-888-851-7376 or email [email protected].  Counselling is available at Parkinson Society Southwestern Ontario office (London), by phone or virtual online meeting through Zoom. 

Emergency Community Support Fund (ECSF) Thank You’s!

2020 has been a tough year for all of us, and Parkinson Society Southwestern Ontario (PSSO) is no exception.  We rely on charitable donations to ensure our programs and services are available to all of our clients across Southwestern Ontario. This year, we are grateful to the Community Foundations and United Way’s listed below for their support of PSSO through the Emergency Community Support Fund. This fund is meant to help charities in our communities through grants for staffing, programming and technology initiatives to help maintain and deliver services. We appreciate their support in helping PSSO as we continue to support those living with Parkinson’s in Southwestern Ontario.

Our thanks to:

Chatham Kent Community Foundation
Dufferin (Orangeville) Community Foundation
Grand Bend Community Foundation
London Community Foundation
Sarnia United Way
Stratford Perth Community Foundation
Grey Bruce United Way

A Message from CEO Shelley Rivard

Parkinson Society Southwestern Ontario (PSSO) recently learned that one of our third-party providers, Blackbaud, has experienced a ransomware attack that impacted many of its clients around the world, including PSSO, which may have involved your personal information.  We are committed to the protection and privacy of your data, so we are informing you of what transpired so you can take extra precautions.

PSSO manages personal information related to our stakeholders for the purpose of volunteer and donor relations, communications and historical record keeping through Blackbaud, software provider for non-profit organizations.

We were notified on Thursday July 16th, that Blackbaud had discovered and stopped a ransomware attack in May.  While PSSO was not specifically targeted, data from PSSO that may have been affected includes contact information – names, addresses, phone numbers, email address, gender as well as historical giving.  Blackbaud has assured us that data such as credit card numbers, usernames and passwords were not compromised as they were encrypted.  The cyber criminal’s ransom was paid and relevant data was destroyed, according to the update provided by Blackbaud.

Blackbaud has informed us that there is no reason to believe that data related to our organization will be misused, but we recommend that you exercise extra caution.

Blackbaud has carried out an internal investigation with the assistance of outside cybersecurity experts and law enforcement and is confident that the data was removed and has not been further used or disclosed.  As extra precautionary measures, their investigators are continuing to monitor usage of data taken.

In addition to notify you of this incident, we have taken the following steps:

  • We have informed the Information and Privacy Commissioner and will follow their advice on additional safety protocols
  • We are working with Blackbaud to understand why this happened, what actions they are taking to increase their security, and to enable multi-factor authentication to protect our data in the future

We appreciate the trust and support of the PSSO community and regret the concerns that this may have caused.  We are here to address your questions or concerns by calling 1-888-851-7376 or email [email protected].

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

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!