All posts by Joanne Bernard

Add PEP to Your STEP

The NEW online Parkinson Education Program (PEP) for Community Caregivers is an eight-module educational series offered to help better equip healthcare professionals in providing care to individuals living with moderate to severe Parkinson’s.

We offer this FREE online training program to professionals working in community settings (e.g., long-term care homes, home healthcare agencies, etc.). Our aim is to help reduce the burden of those living with the disease and their professional healthcare providers.

Healthcare professionals will gain valuable practical skills while increasing knowledge and confidence in order to care for those living with Parkinson’s. This program is self-paced, ongoing and can be taken at any time! Don’t miss out on this learning opportunity!

For more information or to register, go to peponline.ca or contact Kaitlin Garbutt at [email protected] or 1-888-851-7376.

 

“Parkinson Education Program (PEP) for Community Caregivers is a very worthwhile coninuing education course for anyone working with people with Parkinson’s.

This course is divided into manageable-sized modules that are written concisely and in language easy to understand. The accompnying voiceover helps with focus and comprehension.

Despite many years of nursing, often with people with Parkinson’s and their families, I learned new things from this course which destroys the stereotypes that most of us have and provides caregivers with a glimpse inside the patient’s perspective is key to a successful therapeutic relationship.”

Kathy Faulds, RN BScN

April is Parkinson’s Awareness Month!

Be part of Parkinson’s Awareness Month by:

Registering for one or more Living Well Conferences …

Spreading awareness of the Parkinson’s Pandemic

Liking our Facebook page

Booking an appointment at Hair Affair for Parkinson’s

Sharing our posts on Facebook and Twitter

Registering for Dr. Jim Frank’s webinar Getting the Most of Your Exercise Routine for Parkinson’s (April 17)

Honouring our local healthcare professionals at the Parkinson’s Medical Reception (April 11)

Volunteering

Organizing your own event

Registering for WALK-IT for Parkinson’s and start collecting pledges

Gary Welch

Gary’s first inkling that something wasn’t right occurred in 1992 while travelling through the British Isles. A developing weakness in his right arm, according to his doctor, was likely tennis elbow. The weakness never completely disappeared.

Six years later while visiting Disney World and taking a dip in the pool, he found himself swimming in circles, his right arm almost void of strength. After multiple doctor visits the situation was written off to the effects of personal stress. Gary had been diagnosed with prostate cancer and went through extensive surgery. He was off work for a year because of complications. During that time he lost both of his parents. Depression was the diagnosis. But Gary knew something else was going on.

A month later while talking on the phone, he collapsed. Rushed to the hospital with a suspected heart attack. Thankfully, that wasn’t the case, but the doctors were puzzled and brought in a neurologist.

Prior to this Gary had been experiencing problems at work – forgetting meetings, leaving his car running, forgetting passwords. He hadn’t even realized that his right leg was starting to drag when walking. After a lengthy consultation, the diagnosis was early onset Parkinson’s. He was 55. Gary had no idea what would continue to happen, how fast or how often symptoms would occur. He was told to travel while he could, stop driving and reduce working. Being an active ‘Type-A’ personality, this was devastating news for Gary.

Three months and several tests later, Gary was advised to remain home on long-term disability. With all he was going through, Gary began to think, “Why me?” A voice replied, “Why not me?” And he forged ahead.

He enrolled in a six-week education course at Parkwood Hospital for people dealing with Parkinson’s. Then Gary and his wife Elizabeth contacted Parkinson Society Southwestern Ontario and joined the London Parkinson’s support group to learn as much as possible about Parkinson’s. Elizabeth jumped right in as well, taking on the role of facilitator for the London Parkinson’s support group for seven years. They are both still part of support group.

Gary’s rock is Elizabeth. “My luck has been having the most loving caregiver a person could have, my wife Elizabeth. She is a retired registered nurse. We have a wonderful and supportive son and daughter along with six special grandchildren. What more could we ask for? Life has been good to us.” This positive nature which they share has helped them through this often-tough road.

Gary kept busy by volunteering for 11 years at a local public school helping out a grade-one teacher. He enjoyed every minute of it. He regularly attends the Parkinson’s biweekly exercise program at Parkwood Hospital. Upon returning home he counts his blessings after seeing individuals in worse shape than him. Everyone is so different with this disease.

Gary’s health has definitely deteriorated over the last two years. He is experiencing more activity tremors and falls, often resulting in major medication changes, as well as having to use his walker much of the time. But he remains as active as he can, working in the garden and playing cards with friends. He always believes a positive attitude prevails.

According to Gary, “The most positive thing that we have experienced over the past years is the wonderful friends we have met during this difficult journey. We all share some of the same symptoms, but also have to chuckle and try to keep moving forward.”

Nelson Sleno

When Nelson Sleno was diagnosed with Parkinson’s at the age of 48, little did he know that thirteen years later he would be breaking provincial Powerlifting records.

But getting there wasn’t always easy. What Nelson refers to as the ‘beginning of the darkness’ began in May 2002 with a twitching thumb. An increasing tremor in his left hand was followed by the inability to move his arm properly. This, in turn, threw off his gait and he found himself stumbling. His sleep became disturbed.

He recalls the dark days of diagnosis. “It was like being kicked over and over. The blows just took your breath away.” A successful teacher and athlete, Nelson left his teaching role and withdrew from activities he had enjoyed for years. Depression was setting in.

A chance meeting and a harmonica changed all that and gave Nelson the strength he needed to begin to manage his situation. He began volunteering at Headwaters Hospital (where he still is today, working as a patient escort), and there he met Hal, a fellow blues harmonica player, whom Nelson describes as ‘a dynamic 80 going on 40.’

Their friendship grew and they began jamming together. It was Hal who convinced Nelson to start performing, something which continues to this day. They were known together as ‘Thunder and Lightning.’ Nelson has learned to adapt to the roadblocks he encounters. Sometimes he may use a neck rack or harmonica holder when his hands refuse to cooperate.

In 2013, Nelson published Shaking Hands, a chronicle of his inspirational and amazing journey – one he calls a “road-map to guide family and friends whose lives are indelibly altered by this disease.” Since that time Nelson has been busy speaking at support groups and schools, and he was interviewed on Rogers Cable. He is back on the road, heading to Montreal to speak at a support group in Dorval, and then presenting a workshop at the Provincial Association of Teachers Convention.

For Nelson, his finest moment was in June 2014. A competitive weightlifter for over 21 years, Nelson wanted to remain in shape and continue to compete. The effects of Parkinson’s and the challenges it presents made Nelson realize he had to think differently about how and when he trained. However, not training was never an option, and he developed a plan that worked. Nelson took home the provincial record for his age group, squatting a record 264 pounds. He matched the deadlifting record of 248 pounds and broke the 3-lift total record.

His advice to those beginning this journey: “Get a good neurologist. Shop around if you have to and find one who is willing to get to know you and work with you. Do your research on Parkinson’s and be clear on what your options are. Understand that the disease progresses; it doesn’t get better. I think understanding this helps to prepare you for changes that do follow. Have a goal for each day. Plan to do something you want to do and follow through on it. Even if you don’t succeed completely, you have won the battle because you attempted something. Just keep doing!

Gary Dallner, Neil Tenney and Wayne McManus

Gary Dallner:

Gary began his volunteer career with Parkinson Society Southwestern Ontario (PSSO) in 1996 when a friend and fellow volunteer from a local Optimist Club encouraged him to get involved in the London Parkinson’s walk. Gary became the corporate sponsorship coordinator and was very successful at securing sponsors over the eight years in the coordinator role. Although Gary’s roles and responsibilities have changed over the years, he is grateful for the friendships he has made and for having the opportunity to give back to the community.

Neil Tenney:

Neil has been volunteering with PSSO since the late 90’s. Like Wayne, he has a variety of volunteer duties and is a Signatures’ committee member, while making himself available upon the needs of PSSO. Neil, a retired language teacher, puts his professional skills to good use by proofing The Parkinson’s Update as well as other written materials. Neil likes to volunteer for PSSO because he feels appreciated, has made many new friends and admires the people he has met living with Parkinson’s who have maintained positive attitudes.

Wayne McManus:

Wayne has a friend and former co-worker who has lived with Parkinson’s for many years. Wayne visits his friend regularly to talk and offer his support. His friendship led to becoming involved as a regular office volunteer over the past nine years. Wayne is our resident ‘Jack of all trades’ because his volunteer duties vary significantly. Wayne has been involved in everything from a Signatures’ committee member to office maintenance and everything in between. Wayne feels that volunteering is a two-way street – he gets satisfaction out of helping others. It is very rewarding!

Supporting our Supporters!

What do these three men have in common?

  • They are involved in volunteering for Parkinson’s events.
  • They enjoy the friendships they have made through volunteering at PSSO.
  • They support our supporters – they get together for lunch on a regular basis so that they can support the restaurants participating in Signatures. They encourage others to frequent these restaurants as well. For a complete list of participating restaurants and caterers, go to parkinsonsociety.ca.

 

Gary, Wayne and Neil encourage others to support the Parkinson’s community by volunteering. To find out how you can become a volunteer, contact Vickie Thomas at 1-888-851-7376 or [email protected]

Marisa and Michelle Krulicki

Marisa and Michelle Krulicki began their involvement with Parkinson Society Southwestern Ontario (PSSO) as walkers on Team Popsy at the Waterloo Regional walk in 2011. Marisa organized the team for her grandfather Bill Renaud, lovingly called ‘Popsy’ by all. They were very pleased that as a new team they placed second in overall funds raised at the local Parkinson’s walk.

In 2015 Marisa and a friend volunteered for the walk held at Resurrection Catholic Secondary School. Marisa’s mom Michelle followed her lead by volunteering for the walk the next year. M&M, as Marisa and Michelle are affectionately called, co-chaired the Waterloo Region WALK-IT for Parkinson’s in 2016.

The walk was both intimidating and exhilarating. New to the volunteer walk committee, M&M didn’t know what to expect in terms of turnout, timing and dealing with the terrible weather. But everyone – volunteers, walkers and families, sponsors, as well as our MC and DJ – were so supportive and encouraging that M&M came back for year two.

Being involved with PSSO is a natural progression for both Marisa and Michelle. They were very close to Dad/Popsy and he set the standard for volunteering one’s time. Bill Renaud was well known in their community as the ‘go to guy’ for fundraising. He volunteered for Heart and Stroke and the St. Mary’s High School Capital Fundraising Campaign. He was also President for both the KW Oktoberfest and the Twin Cities Kiwanis Club to name a few. Before Parkinson’s took away his ability to walk, talk and (his favourite) eat, Bill Renaud always said ‘yes’ to whoever needed help. So, volunteering with PSSO is Marisa and Michelle’s way of honouring and connecting with Dad/Popsy even though he is no longer with them.

Marisa and Michelle are both inspired by the people they have met who live with Parkinson’s by living their lives to the best of their abilities with hope and determination. M&M’s wish is that their volunteering, with the money raised at their local walk, helps to find a cure for Parkinson’s and provides support for those living with Parkinson’s and for their family members.

Pamela Helmes-Hayes

It was her mother’s 23-year journey with Parkinson’s that ultimately launched Pamela Helmes- Hayes’ journey of volunteering. Sadly, she lost her mother in 2008. Over the years of seeing and supporting her mother through the progression of Parkinson’s, Pamela made the decision to give back to the organization that helped when help was needed.

Pamela began volunteering with Parkinson Society Southwestern Ontario (PSSO) almost five years ago after retiring from a career that kept her travelling and often away from home. Pamela didn’t have a defined role when starting her volunteer duties. She has helped out with various events like A Hair Affair for Parkinson’s and golf tournaments. Within a few months, she accepted the role of co-facilitator for the Evening Kitchener Parkinson Connection Support Group. A few months later the role of facilitator opened up and Pamela was pleased to continue to support the group with whom she had close relationships.

According to Pamela, “Being the facilitator of this support group is a truly special and rewarding opportunity. Here, people share personal stories while strong friendships are built as people connect, learn together and support each other.”

Becoming involved with PSSO opened up a whole world of volunteer opportunities for Pamela, along with showing her a new way of life and a love of giving back to her community. She also supports the Rock Steady Boxing classes at her local YMCA, a program that promotes fitness, flexibility and strength for people with Parkinson’s. Once a week, she makes lunch at a homeless shelter for youth in need and she also teaches fitness classes at a local retirement home. Pamela continues to volunteer regularly because, as she says, “It’s important and worthwhile. It makes a difference in people’s lives. Volunteering improves lives.”

When she’s not taking care of everyone else, this marathon runner continues to remain active – running, cycling and weightlifting. And during her down time, Pamela is an avid reader of Canadian literature where she enjoys learning about people, life and relationships.

A career that began in Toronto and moved to Newfoundland, then to Waterloo and finally landing at the governor general’s office in Ottawa, allowed her to travel the globe. Her eyes were opened to the widely varying needs in communities worldwide. Seeing that need is what sparked her desire to volunteer and to make a difference in the world.

Even her sister is involved in supporting Parkinson’s. She is working with a group that is creating a choir for people with Parkinson’s. It is well-known that in many situations singing is easier than talking. The shared chorale voice helps to strengthen speech muscles and improve overall communication.

Pamela vows to continue with the support group. She says, “I’ve made connections that I have no intention of leaving. This is important and rewarding work.”

Her advice to anyone considering volunteering? “Go with what Nike says, Just Do It!”

Bob Cotie

Bob Cotie received his Parkinson’s diagnosis about nine years ago. Like many who are newly diagnosed, Bob researched Parkinson’s on the Internet. He landed on the Parkinson Society Southwestern Ontario website (parkinsonsociety.ca) and registered for the Regional Parkinson’s Conference.

After attending a couple of Parkinson’s conferences, Bob felt compelled to get involved. He began volunteering with the Port Elgin, Kincardine and Area Walk for Parkinson’s and has been a part of the planning committee for four years now. Bob’s focus is on visiting local businesses in order to obtain corporate sponsors and the local corporate community has been very generous.

Bob Cotie recently retired as a pastor at two churches. He remains very involved in the community by helping to provide free dinners every Monday night through the generosity of one of his sponsors, The Queen’s Bar and Grill. He is also involved with the local food bank.

Bob understands the value of attending support groups. He enjoys attending the Young-Onset Parkinson’s Coffee Club in Hanover where he has gotten to know a number of people. Bob and his wife Deb also spend some time in Florida where they have met others living with Parkinson’s. There is the possibility of starting a support group there as well.

Bob has been enjoying his volunteer experience and is very impressed with the amount of dedication he sees with others volunteering for Parkinson Society Southwestern Ontario in his community. He feels that volunteers are necessary to get things happening, like education, awareness and research.

The Port Elgin, Kincardine and Area WALK-IT for Parkinson’s has become an annual event for Bob and his family. The group of about 18 (kids and grandkids) not only participate in the walk, but also come early to help with set-up. Volunteering is truly a family affair!

Joe Renaud

The Parkinson’s diagnosis at the age of 44 knocked the wind out of Joe Renaud and his wife Sarah. What began as a twitch in his thumb turned into a world of questions, concerns and fear as they wondered what a diagnosis of Parkinson’s meant – and what it would bring.

As they started their journey of education and discovery, Joe began to realize that perhaps the Parkinson’s diagnosis was not as bad as other news he could have received. Having lost friends to cancer, there was some relief to Joe knowing that he did have some control over the hand he had been dealt. And deal with it he did.

Memory loss and difficulty focusing quickly became the main symptoms that Joe experienced, and as a result, he had to leave his job as restaurant manager. He is grateful for the role he had at the restaurant because it was where he met his wife Sarah, a woman Joe proudly states is the one person that, “he couldn’t have gone through all this without.” He also gives thanks to his other top supporter, his son, Adam.

Joe tires easily. He cannot do as much as he used to, and has to take his time with many simple tasks. Setting priorities on what does and doesn’t get done on any given day, Joe knows that in time it will get done. He plans his days differently than he did prior to starting his Parkinson’s journey. Some days it takes longer to get going, and with others, the depression sets in. He accepts and understands those changes and challenges and he remains positive and active. Joe continues to enjoy his two passions of fishing and cycling, but at a somewhat slower pace.

Learning about the Parkinson’s walk in 2009, Sarah suggested family involvement and from there the team of ‘Renaud’s Raiders’ was born. On average, six to ten friends and family members walk together at each annual event. In eight years, Renaud’s Raiders raised over $40,000 for Parkinson’s programs.

Joe and Sarah also began an annual springtime pasta dinner event to raise awareness and support for Parkinson Society Southwestern Ontario. A dedicated group of almost 200 friends and family gather every May at the Royal Canadian Legion in Windsor for a night of good food, games and camaraderie to show their support of Joe and all he has accomplished.

At a recent event, Joe decided to give his annual speech a personal twist and talked about ‘a day-in-the-life’ of living with Parkinson’s. He shared many of his experiences with tremors, how people perceive and look at the shaking hands and stumbling legs, the helplessness he felt when he was diagnosed, the stares, and on occasion, the unnecessary unfriendly comment.

He shared a story about an evening out with Sarah and friends where he was walking through the lobby alone and stumbled. Security, quite loudly, questioned how much Joe had been drinking. Joe calmly explained he hadn’t been drinking at all, and told his story. Disappointed with the way he was treated, Joe called the facility the next morning to discuss the situation with the manager and stress the need for employees to be sensitive to the needs and restrictions of others, and not to just assume that alcohol, or something worse, is the cause. Joe received a written apology for the incident and a complementary dinner-for-two gift card. Joe then received a far greater gift later that month when he learned that all employees of that facility were going to be participating in sensitivity training, which would teach everyone to be more aware and supportive of all individuals.

Joe considers himself an ambassador for Parkinson’s. His personal mandate is education. “If I can educate someone every day, then my job is done. There is nothing wrong with a trembling hand. There is nothing wrong with how we walk.” He also attributes much of his success to the incredible support system he has with his family, friends and the medical team.

In closing, Joe wanted to share a quote by Michael J. Fox. “One’s dignity may be assaulted, vandalized and cruelly mocked, but cannot be taken away unless it is surrendered.” We all have a choice.

The Parkinson’s Update – Issue 69 (Winter/Spring) has just been mailed

The Parkinson’s Update – Issue 69 (Winter/Spring) has just been mailed

The Parkinson’s Update (Issue 69)

Read about the latest in local research, inspiring stories and educational articles dealing with Parkinson’s. If you wish to begin receiving The Parkinson’s Update, visit sign up for The Parkinson’s Update.


Living Well Conferences: What’s in Your PD Toolkit?

A Conference will help connect you with community resources to help you live well with Parkinson’s.  Register for a Living Well Conference closest to you:

Cambridge
Walkerton
Stratford
Windsor

Living Well Conference Flyer 


Become a Volunteer Mentor for the PEP for Community Caregivers

Monthly Giving/Membership Form