VISIONS – November

Cover of the VISIONS November featuring poppies.

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VISIONS

Canadian Council of the Blind Newsletter

November 2022

“A lack of sight is not a lack of vision”

From the President’s Desk

It is time to turn the page in our calendars, as we move into November; moving forward on issues such as advocacy, membership, vision health, safe transportation, and sports. This allows us the opportunities to go about our lives knowing that although we are living with vision loss, an even playing field must be something we continue to strive for. We have come a long way with technology, and although many of us embrace it, we must remember that technology, while for most of us makes our lives easier, for some of us, technology can be daunting. To those, we must continue to engage our knowledge and education as there is a lot of truth in what is known as the technical divide.

CCB continues to strive forward to bridge this gap, with programs such as the CCB getting together with technology (GTT) program. This program, along with our monthly newsletter, social media presence and our web site, are all integral communication tools in ensuring those we serve keep up to date with change.  Our GTT program ensures you learn at a pace which fits your comfort level, as it offers many different options from beginner to advance.

We also continue to work with our vision partners and pharma to ensure prevention of vision loss, as well as education to ensure stability with vision loss is maintained to protect from blinding eye diseases.

November 11th is Remembrance Day across Canada, a day to remember the many who lost their lives in combat to make Canada the wonderful Country we live in today.  We also must remember the fact that our organization of the CCB was founded by blinded veterans returning from war.

To all those either injured in battle, as well as the many who lost their lives for this great Country, we pay our respects with a day dedicated to thank them for putting their lives on the line to allow us our freedoms we so greatly enjoy. Please wear your poppy in respect of our Veterans.

On behalf of the National Board of Directors, staff, volunteers, and the many who work tirelessly to support the Council, I wish you a safe and healthy November.

Jim Tokos

National President

Announcements

Winners of the Early Bird Draw

Join me in congratulating CCB Sydney Chapter, and CCB Mississauga VIP Chapter on winning the Chapter Membership Early Bird Draw! They have one back all the membership dues they have paid until this point.

Don’t forget! Chapter Membership Rebate due date is November 28, 2022.

CCB’s Get Together with Technology (GTT) Program

GTT is a fantastic way to learn about assistive technology, share ideas and support each other. The program hosts weekly open tech chat’s, Workshops, a Braille Display User group, plus regional group meetings.

You are always invited to the CCB’s GTT Zoom meetings where we focus in on the technology needs and concerns of Canadians who are blind or low vision. The calls take place over the accessible Zoom Conference system, which allows participants to dial in using their landline phones, smart phones, or computers.

To get in touch with GTT, please reach out to [email protected]

Here are some more GTT related resources available:

CCB-GTT PODCASTS

You can subscribe to the CCB Podcast feed by searching for CCB/Canadian Council of the Blind Podcast on the Victor Reader Stream, or your favourite smart device Pod Catcher.

You can use this link to the originating distribution source.

https://ccbpod.podbean.com/

CCB-GTT TECH SUPPORT LIST

CCB sponsors a GTT email support list to provide help and support with technology for blind and low vision Canadians. To subscribe to the email list, send an empty email to: [email protected]

 You will get an email back from the list asking you to confirm your subscription. Simply reply to that email and you are subscribed. You will then receive a second email welcoming you to the list and describing how to use it. You are then ready to post your technology questions and/or answers to the list.

For more information, visit: https://groups.io/g/GTTsupport

CCB-GTT BUY, SELL, TRADE OR DONATE LIST

This is a Canadian Group for blind, partially sighted, and deaf-blind folks to buy, sell, trade, or donate previously enjoyed assistive technology.

To subscribe to the email list, send an empty email to:

[email protected]

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CCB National Men’s Group:

Come join us on Tuesday, November 22nd, 2022 for our upcoming Monthly CCB National Men’s Group Chat via Zoom!

November’s discussion will be focused on “Maneuvering in Your Home”.

Subjects may include but are not limited to the following,

– Household Chores

– Cooking

– Cleaning

– Laundry 

– Using Household gadgets and appliances 

– Household maintenance, minor repairs, etc

– Tips & Tricks

– & anything else you would like to bring up during the discussion.

To join, please email Shane Cashin at 

[email protected]  and request to be put on the list.  Please note, if you have received an invite in the past for previous Men’s groups meetings, you are already on the list and should receive an email on or before October 21st, 2022.

Please remember that we are all smart but not as smart as all of us together.

Blind Golfer Makes Hole in One:

Jacob Detmar, 17, lives in Brantford, Ontario. Seventeen is a difficult age to begin with let alone having both vision loss and hearing loss, requiring two cochlear implants. Jacob struggled with his confidence and self-esteem, feeling like no one knew what he was going through.  With support from his mom, Mandy, Jacob offered to volunteer for blind golf tournaments after seeing a request for help on Facebook.

Jacob, a golfer for the last 4 years, was happy to be assisting the photographer out on the course for the week. However, the tournament was offering a junior clinic, hoping to encourage young people to come out and experience golf with others facing similar vision loss. This included playing in a Scramble, the practice round for the Ontario Blind Golf Championship.

Not only did Jacob impress everyone over at the driving range, his enthusiasm and skills were quite apparent out on the course! Jacob was beaming with excitement just being out with people who had vision loss as he does, feeling like finally, people who knew what he was going through.

Then the most amazing thing happened, Jacob, with his grandpa Doug as his coach, got a hole in one!!

Here is a summary of Jacob’s hole in one, this is provided by the Director of Golf at The Greens, Jacob Erwin, who played with him that day. 

“He hit the shot, and it was dead straight flying towards the pin. It had flag stick written all over it when it left the club face. It looked like it was going to hit the flag, but it was difficult to tell the distance.

The ball hit the centre of the green perfectly online with the pin and disappeared. Nobody knew where the ball went, but it looked like it 1-hopped into the cup. Jacob walked straight over, found his pitch mark 1-2 feet in front of the cup and the ball was sitting in the hole.”

Suddenly, this shy, insecure young man was beaming with pride, becoming the celebrity of the tournament! His parents, and grandparents, could not say enough about the transformation in Jacob.  His mom, Mandy said, “I am so excited to see where this journey leads for him, the impact this has had on his confidence and mental health is beyond what I had hoped for when we first connected.” She added, “I’m amazed by the way he speaks about his vision loss as just part of who he is (it has always been a sore spot and huge frustration for him). And that he found comfort in spending time with others who have similar challenges.

As a mom who has constantly worried and been by his side over the past number of years, it feels amazing to know that he found somewhere with people who were accepting, encouraging and so supportive!”

Jacob’s proud grandma, Patty, said “you have no idea what this week has done for Jacob and his confidence … amazing.”

As for the Ontario Provincial and the ISPS Handa Canadian Blind Golf Championships, both events went extremely well! Everyone enjoyed themselves both on and off the golf course. The staff at The Greens at Renton provided us with a great venue from the condition of the course thru to the food. Their friendly staff supported our players and coaches with open arms.    

On behalf of our players and coaches, I extend our collective thanks to all of our sponsors and volunteers, without their support and help, we couldn’t hold these events. 

Submitted by Hugh Montgomery

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The WBU celebrates International White Cane Safety Day with Canes for Ukraine:

On Saturday, October 15, 2022, the World Blind Union celebrated White Cane Safety Day. Each year, the WBU, along with millions of blind and partially sighted individuals across the world, commemorates this important day. On this day, we celebrate not only the white cane as a mobility tool, but all that it represents – independence, safety, dignity, and the right to lead the life you choose.

Thanks to the many generous contributions to the WBU’s Ukrainian Unity Fund, this year on October 15, dozens of Ukrainians who are blind or partially sighted had access to a white cane. Through a collaboration with Ambutech and a Ukrainian-Canadian named Anna Drannik, the WBU was able to send more than a hundred white canes and over two hundred cane accessories to the Ukrainian Association of the Blind, WBU’s member organization in Ukraine.

“The white cane is an incredibly powerful tool for anyone who is blind or partially sighted, but for those who are displaced due to natural disaster, or due to the effects of climate change, or, tragically in the case of Ukraine, due to war, the white cane takes on an even greater level of importance”, said Martine Abel-Williamson, President of the World Blind Union. “Imagine being forced to leave your home, the place you are most familiar with, and having to orient yourself to new surroundings without the aid of a white cane. This would be tremendously difficult, and I’m so glad the WBU is able to offer a small amount of support to blind and partially sighted Ukrainians so that they don’t have to face this daunting situation”, added Abel-Williamson.

Anna Drannik, a Ukrainian-Canadian living in Canada, approached WBU with an idea to send white canes to one of her contacts in Ukraine. Earlier this year, she worked with Ambutech, a cane manufacturer based in Canada, to send a shipment of canes to Ukraine, and based on that success, she was hoping to do it a second time. This is where the WBU and the Ukrainian Unity Fund entered the picture.

“We were blown away by the outpouring of donations when we established the Ukrainian Unity Fund. The generosity of so many individuals and organizations was incredibly moving”, said Marc Workman, WBU CEO. “This was the perfect project for us to support, exactly what this fund was created for”, added Workman.

“I was never looking for any acknowledgement and was simply trying to help, the same way as many other people who care about people in need and those who are vulnerable. Obviously, we are all trying to help for the cause and not to gain any self-popularity or self-promotion”, said Anna Drannik. “Without the support, the time, and foremost the dedication from so many people, this effort would not have been possible! Thank you so much and from the bottom of my heart for believing in our efforts”, added Drannik.

The shipment of canes started arriving in early October and have now all arrived safely according to Igor Kushnir, a Specialist in Information Technologies with the Training and Information Computer Center of the Ukrainian Association of the Blind.

“We are very grateful for your help in such a difficult time for Ukraine. We really appreciate your support”, said Igor Kushnir.

As we mark this year’s International White Cane Safety Day, let us not only celebrate the symbolism of the white cane, but also reflect on the significance this tool has for those blind and partially sighted people all over the world who are displaced and whose lives have been disrupted due to natural disasters and war. There are many blind and partially sighted people in Ukraine and elsewhere who still need white canes and the training to use them. Governments,

NGOs, civil society, and the private sector have a responsibility to come together to ensure that no one who is blind or partially sighted is left without access to this essential tool for mobility and independence.

Did you know over the last year; an estimated 1.8 million eye exams were missed in Canada?  Learn how the pandemic impacted Canadians’ vision health by accessing the newly released Report Card, and sign the petition to end preventable blindness at StopVisionLoss.ca

National Report on State of Vision Care in Canada Raises Alarm:

A previous report indicated 1,437 Canadians lost eyesight in 2020 from COVID-19 disruptions, so the fact that treatment levels are not back to pre-pandemic levels is alarming many professionals.

Why did the national report on vision care in Canada raise alarm?

While eye-care services did increase in 2021 versus 2020, they did not go back to pre-pandemic levels.

A report card released today on vision health care in Canada warns that services are still not back to pre-pandemic levels, a result which could have devastating results for patients.

The report, a joint study commissioned by the Canadian Council of the Blind and Fighting Blindness Canada, is an update on a study released last year, which looked at the state of vision health in Canada after the COVID-19 pandemic. While eye-care services did increase in 2021 versus 2020, they did not — and, in 2022, are still not — back to pre-pandemic levels, raising concerns about clearing the backlog of patients and addressing current vision needs.

“We had been hearing a lot from the doctors, from the people living with vision loss that were trying to access care, that they were experiencing challenges,” says Doug Earle, CEO of Fighting Blindness Canada. “But I was not expecting the degree that the backlogs that we faced in 2020 have been exacerbated because the system didn’t bounce back.”

A total of 1,437 Canadians experienced vision loss in 2020 as a direct result of treatment disruptions, according to last year’s report card. Many eye-care specialists are deeply concerned this trend will continue because so many patients have missed eye appointments or fallen behind on treatment plans. (The numbers for vision loss in 2021 have not yet been released.)

“I heard doctors telling us that they were frustrated because people would come into the offices … and they’d unnecessarily lost vision,” says Keith Gordon, PhD, Senior Research Officer for the Canadian Council of the Blind and the report’s author. “Patients with glaucoma, for example, who weren’t taking their drops, had lost control of their glaucoma and therefore had lost vision unnecessarily. People who needed specific eye injections were not getting them because they stayed away during COVID.”

Prescriptions for glaucoma medications in 2021 were below 2019 levels, the report continues, and anti-VEGF injections, used to help prevent abnormal blood vessel growth in the eye, were lower than projected. Both of these treatments are critical to prevent vision loss and preserve eye health. The effects of falling behind on treatment plans may not be reversible.

Despite substantial financial commitments from governments across Canada, surgical volumes have also not returned to pre-pandemic levels, raising concerns about clearing the backlog of patients. Many clinics have extended their working hours in an attempt to increase surgical volume, but have to contend with health-care workers’ high burnout levels, explains Earle. Supply chain issues have also resulted in shortages for certain eye drops and other medications, requiring extra time on behalf of health-care providers to find suitable alternatives.

Health Canada was unable to respond to an interview request before publication time. 

Canadians not going back to the optometrist

Outside of surgery backlogs and medication shortages, experts are also concerned about the fall in regular eye check-ups for patients. In 2019, 68 per cent of survey respondents reported they had an eye exam within the last two years; in 2021 that percentage fell by 8 points. 

“Patient engagement, in terms of getting their eyes checked on an annual basis, has definitely changed,” says Stephanie Kwan, practicing optometrist at Specsavers in Hamilton, Ontario. “I personally found that people were afraid to get their eyes checked and some even waited till they noticed a change or a decline vision until they came in to see an optometrist.” 

Conditions like glaucoma rarely have symptoms in early stages, which is why routine check-ups are important. By the time vision is impacted, the damage is largely untreatable. 

“Getting your eyes checked is so important because some diseases can go undetected for years. Bleeding in the back of the eye, glaucoma, and macular degeneration are all preventable, when it comes the saving your eyes and keeping your sight,” says Kwan. “The thing is, when it comes to the eyes… when it comes to some vision loss, it could be irreversible.” 

The reasons people put off eye exams makes sense, of course — but the consequences can be severe. “If you don’t have anything obviously wrong with your eyes, if you don’t have pain in your eyes, or you can see fairly well you’re going to say Well, geez, I’m not gonna go to see an eye doctor.  COVID [is] more dangerous to me,” Gordon says. “But by doing that you’re missing important diagnosis of diseases that are asymptomatic, and you may be losing vision as a result.” Kwan stresses that optometry offices are clean and have COVID protocols in place to make at-risk patients comfortable returning to regular visits. Anyone who is concerned can also call their eye-care provider to book a less busy appointment time and confirm COVID protocols. 

Fighting for a national eye care strategy

Earle explains that while the financial commitment by the federal and provincial governments helps, it is only part of the solution to solving critical gaps in vision care, which will only become more severe as Canada’s population continues to age. 

Bill C-284, 

An act to establish a national strategy for eye care, was introduced in June. If passed, this bill would require parliament to enact a national eye-care strategy within one year, and evaluate the effectiveness of the program in regards to eye disease prevention and treatment within five years.

“What we’re advocating for is that the government put together a national eye health strategy. And look at all aspects of this,” says Gordon. “There are now issues related to a shortage of healthcare workers — we have to increase training associated with that — issues related to supply of pharmaceuticals, the supply chain has been disrupted. There are dozens of issues that need to be looked at and they need to be looked at as a whole.” 

More ophthalmologists and optometrists need to be trained and deployed to at-risk locations, which will time and planning, says Earle. Eye care also needs to be integrated with overall health, so patients at risk of losing their eyesight (for example, patients with diabetes) are aware of funded eye-care services available to them.

More research is also needed to address the growing number of adults in Canada who will need vision care in the future.

“We need to get the system integrated, working together, to deliver care in every community so people do not go blind. They don’t have to [go blind],” says Earle. “Research has delivered treatments that enable people if they’re diagnosed early and have access to those treatments, we can stop preventable blindness.” 

By Emma Jones

In the News

Seeing the World Before Their Vision Falters:

Note from the Editor: A story of this family appeared in a Visions newsletter earlier this year, but since this family’s story is so incredible and inspiring, I thought you may want an update on how their travels are going!

A Canadian family is on a yearlong journey across Asia and Africa because three of their four children have an eye condition that causes blindness.

For their youngest son’s fifth birthday this summer, Edith Lemay and her husband took their children on a hot-air balloon ride above central Turkey that began before dawn.

As the sun rose over the Cappadocia region, it revealed other balloons floating in the sky and some chimney-like rock formations on the ground below — a transcendent experience that her 9-year-old likened to a dream. “That’s what we all felt because it was way too magical,” Ms. Lemay said.

Six months ago, Ms. Lemay, 44, and her husband, Sebastien Pelletier, 45, left their home in the Montreal area for a yearlong trip across Asia and Africa. Three of the French Canadian couple’s four children have a rare eye condition that has already impaired their vision and will slowly destroy it entirely unless an effective treatment materializes. The trip is a chance for them to see memorable sites while they still can.

In another sense, Ms. Lemay said, her family’s journey across Asia and Africa is a catalyst for her three children with retinitis pigmentosa

— Laurent, 5, Colin, 7, and Mia, 11 — to develop what she called “solution-oriented” behavior in the face of setbacks large and small, a habit that could prove useful as their eyesight continues to diminish. (Her oldest boy, Leo, 9, does not have the condition.)

Ms. Lemay said she also hoped the trip would force her children to appreciate how lucky they are in a world where many of their peers do not have electricity in their homes, books in their schools or other comforts that people in wealthy countries take for granted.

 “I want them to look at their life and see what’s good, what’s beautiful in it,” she said by phone last month from Indonesia, as Laurent splashed in a nearby swimming pool. “Not the little problem with their eyes.”

The prognosis

Retinitis pigmentosa encompasses a group of hereditary disorders that affect an estimated one in 3,000 to 4,000 people worldwide, including as many as 110,000 in the United States, according to the National

Organization for Rare Disorders, a nonprofit in Massachusetts. It causes slow degradation of the retina, and the symptoms can develop over decades.

People with retinitis pigmentosa typically begin to lose their vision during childhood. In the next phase of the disease’s progression, they start to lose their peripheral vision, making it hard for some children to play sports or to avoid bumping into their classmates in the hallways, said Alfred S. Lewin, a professor emeritus of molecular genetics and microbiology at the University of Florida in Gainesville.

In advanced stages of the condition, their vision becomes so impaired that they are considered legally blind, though most do not completely lose their ability to detect light, Dr. Lewin said. But several promising new experimental therapies are in human clinical trials and could be approved in the next few years, potentially helping many children and young adults with the condition avoid blindness, he added.

For now, existing therapies can help slow the progression of the condition, said Lin Bin, a professor of optometry at Hong Kong Polytechnic University.

“These treatments can buy time for the patients for new research breakthroughs and new and more effective treatments,” he said.

Facing reality

Ms. Lemay said that while she and her husband were cautiously hoping for a breakthrough treatment, they did not want to set themselves or their children up for disappointment.

 “If a new treatment comes, good, we’ll be super happy,” she said in mid-September from the Gili Islands of Indonesia, where her children had just snorkeled with turtles. “But we’re not going to be sitting there waiting on a cure. We want our children to accept their situation and learn how to make the best of it.”

At this early stage, the children do not talk much about their eyesight, and they occasionally even crack jokes about their condition, Ms. Lemay said. The only reason she has been discussing it so much lately is because reporters keep calling to ask about the round-the-world trip.

“It’s not something sad in our family,” she said. “It’s just something that’s going to happen, and we’re going to face it.”

At the same time, she said, it can be hard to discuss retinitis pigmentosa with her children, especially Laurent, who doesn’t yet understand its full implications. “How am I going to cross the street?” he asked her this summer as the family drove through the Mongolian Steppes in a Russian-built van. “Will my wife be blind?”

Another time in Mongolia, Ms. Lemay was gazing at the Gobi Desert’s night sky when she remembered that her three children who have the condition cannot see stars because of their night-vision loss. She did not bother to wake them up.

Seeing the sites

Ms. Lemay said that the trip so far had been loaded with adventure and serendipity, and that her children never seemed to become bored.

Their journey began with a three-month, coast-to-coast, overland trip across southern Africa. An early highlight for the children, she said, was a 24-hour train ride across Tanzania, where they slept in bunk beds and watched in awe as vendors approached the windows to hawk bananas.

After a month in Turkey, the family traveled to Mongolia and spent more than a month on a road trip through the countryside, staying in yurts and eating boiled mutton.

The children loved that, too, even if the toilet facilities along the way ranged from “abominable to bearable,” as Ms. Lemay put it on her Facebook page. Her daughter, Mia, enjoyed riding horses so much that she cried tears of joy. And even though Mia and two of her brothers can no longer see stars, they enjoyed looking at pictures of the Gobi’s night sky on their mother’s laptop.

Soyolsaikhan Baljinnyum, the family’s tour guide in Mongolia, said by phone that the family was one of the kindest he had ever met.

“It really hurts me when I think about them losing their vision,” he said of the three children with the eye condition. “But there’s always hope; there could be a miracle.”

Ms. Lemay, who works in health care logistics, said her family planned to spend the next two months island-hopping across Indonesia by boat and bus. From there, they intend to visit Malaysian Borneo, Thailand, Cambodia and Vietnam, with a potential stop in Hawaii on their way back to Canada. But it’s all subject to change: Their itinerary is fixed only about a month in advance.

Among the surprises so far, Ms. Lemay said, is the way her children tend to fixate on things that seem peripheral to whatever their parents had planned to show them, such as stray cats and dogs, or a tiny beetle they spotted at the base of a colossal red sand dune in Namibia.

“Hey, we came all the way around the world to see that, and you’re looking at a little bug?” Ms. Lemay said she asked them at the UNESCO World Heritage site.

“But if we listen to them,” she added, “they show us that there is beauty everywhere.”

By Mike Ives

www.ccbnational.net                     1-877-304-0968

 [email protected]

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