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Racing for memories

Racing for memories

Recently, my family has joined the unfortunate ranks of those who have been impacted by Alzheimer’s disease. My mom started showing early signs of the disease a few years ago, and it has slowly and stubbornly progressed ever since. The toll that Alzheimer’s is taking on my mom is obvious and devastating. Less obvious, but just as significant, is the impact it is having on my dad. As my mom’s primary caregiver, it’s been said that my dad must ride the world’s tallest, fastest and scariest emotional roller coaster each and every day. Sadly, in my observation, this is absolutely true.

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Matthew Walks to honour the memory of his beloved Oma

Matthew Walks to honour the memory of his beloved Oma

Matthew Vorstermans and his grandmother had a very special bond.

“My Oma lived in Pittsburgh during most of her life and I only saw her about once or twice a year,” Matthew explains. “Despite the distance between us, we maintained a great relationship. We wrote letters to each other and talked on the phone all the time. There was never a time where we’ve held a grudge or anything; we’ve always gotten along.”

Matthew was born with Cerebral Palsy, and sites his Oma as a great role model and support as he grew up. “She didn’t care that I had a disability. She was proud to have a grandson—before me she had only had granddaughters. The fact that I am disabled, she was indifferent to that. She said, ‘I finally have a grandson and I love that.’”

“All my life, Oma had always been right there to give me comfort, reassurance and companionship.”

The signs of dementia started to present themselves slowly. She struggled to recall details about her life, and her own family. That’s when Matthew decided to reach out to the Alzheimer Society, to help him understand the disease that was impacting his grandmother.

It was not long before the disease began to take a toll on his grandmother’s short term memory. Eventually she didn’t remember Matthew at all. That, along with the distance, took a toll on Matthew.

“As the disease progressed, in the last six years of her life, she moved to Nova Scotia. I wasn’t able to see her as frequently. I felt guilty. It was very painful.”

“I wanted to do something about the situation.”

Matthew contemplated how he could turn the feelings of sadness and helplessness into positive action.

“It took me a while to arrive at the conclusion, but I finally decided that as much as I’d like to be with and comfort Oma, I can’t, but I can do that for somebody else.”

Matthew contacted the Alzheimer Society of Simcoe County and began to volunteer, fundraise, and actively seek out opportunities to speak about his experiences. He began participating in the Walk for Alzheimer’s in 2007. Since then, he’s single-handedly fundraised $27, 815.36 for the Alzheimer Society.

Matthew Vorstermans at the Walk in 2015 “I’ve met a lot of people, particularly at the Walk for Alzheimer’s, who tell me that they like what I’m doing. They may have lost their husband or wife only a couple months ago, which is why they’re walking. I think it’s important to realize that, as painful as it is, you don’t have to wait until your own personal experience is over. You can turn that pain into positive action whenever you feel like it. It may even be therapeutic for you. It certainly was for me.”

“It is never too early, or too late to get involved.”

Are you ready to start fundraising for the Walk for Alzheimer’s? Join the Walk for Alzheimer’s today!

At 21, Alzheimer’s is the last thing on your mind – until your mom gets it

At 21, Alzheimer’s is the last thing on your mind – until your mom gets it

It’s common to think that dementia affects only particular demographics—like seniors—but Kathryn Fudurich’s story reminds us of how this disease can have a huge impact on anyone’s life.

When Kathryn was 21 and in her last year of university, her mom, Patricia, was diagnosed with young onset dementia. The signs had been there for a while. Patricia had become anxious about everyday tasks like driving, began buying household items in multiples and struggled professionally. At age 55, she could no longer keep her job or live alone. So Kathryn and other family members stepped in.

Kathryn moved back home after graduation and put her life on hold to be a part of her mother’s care. She felt very much alone in this situation at such a young age, so she reached out to the Alzheimer Society of Toronto. Later she discovered some of her own friends were also going through this experience. What Kathryn really needed was to talk to someone who had been there, who knew what it means to live with an irreversible diagnosis.

Kathryn continues to share the responsibility of care with her dad and siblings. But it doesn’t get easier. Caring for someone with dementia is incredibly time-consuming and emotional, because it’s a “living disease,” not something you just “get over.” Kathryn describes feeling the loss of her mom every day, and struggles with the need to be there—or close by—even eight years later.

Through mutual friends, Kathryn met Carolyn Poirier, whose mother also has Alzheimer’s. She joined Carolyn and her friends in founding Memory Ball as a way of raising funds for people living with dementia. “Stepping out of the caregiving role, even briefly, is really important for caregivers,” says Kathryn.

But what’s even more important? When friends step into your world. If you know someone living with Alzheimer’s disease or dementia, spend an afternoon or evening with them. Bring them a hot meal, and see first-hand what their life is like.

There are so many ways to support families like Kathryn’s, so many ways to get involved with the people in your community affected by this disease. You can also donate to the Alzheimer Society, so that we can continue to offer resources and fund research. Because it’s not just their disease. It’s ours too. #InItforAlz

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À 21 ANS, LA MALADIE D’ALZHEIMER EST LE DERNIER DE VOS SOUCIS, JUSQU’À CE QUE VOTRE MÈRE EN SOIT ATTEINTE

kathryn fudurich
On pense souvent que la maladie d’Alzheimer affecte seulement une certaine tranche de la population, à savoir les personnes âgées. Mais l’histoire de Kathryn Fudurich nous rappelle que cette maladie peut avoir de graves répercussions sur la vie de tous.

À l’âge de 21 ans, alors que Kathryn terminait sa dernière année à l’université, la maladie d’Alzheimer à début précoce a été diagnostiquée à sa mère, Patricia. Certains signes s’étaient déjà manifestés depuis quelque temps. Les tâches de la vie quotidienne, comme la conduite automobile, rendaient Patricia très nerveuse. Elle achetait les mêmes produits ménagers à répétition et éprouvait des difficultés dans sa vie professionnelle. À l’âge de 55 ans, elle n’a plus été en mesure de travailler ou de vivre seule. Kathryn et les autres membres de sa famille sont donc intervenus.

Après avoir obtenu son diplôme, Kathryn est rentrée au bercail et a mis sa vie de côté pour prendre soin de sa mère. Elle se sentait très seule dans cette situation à un si jeune âge, et elle a donc communiqué avec la Société Alzheimer de Toronto. Un peu plus tard, elle a découvert que certaines de ses propres amies vivaient la même situation. Ce dont Kathryn avait vraiment besoin, c’était de parler à quelqu’un qui avait vécu la même expérience et qui savait ce que cela voulait dire de vivre avec une maladie irréversible.

Kathryn continue aujourd’hui de partager la responsabilité des soins de sa mère avec son père et ses frères et sœurs. Mais la situation n’est pas facile. Prendre soin d’une personne atteinte d’une maladie cognitive demande beaucoup de temps et d’énergie psychique parce qu’il s’agit d’une maladie évolutive qu’on ne surmonte pas. Kathryn ressent tous les jours ce sentiment de vide devant la maladie de sa mère et essaie d’être là pour elle à ses côtés, ou le plus près possible, même huit ans plus tard.

Par l’entremise d’amis communs, Kathryn a rencontré Carolyn Poirier, dont la mère est également atteinte de l’Alzheimer. En compagnie de Carolyn et de ses amis, elle a participé à la fondation de « Memory Ball » afin de recueillir des fonds pour les personnes atteintes d’une maladie cognitive. « Le fait de sortir de son rôle d’aidant, même brièvement, est vraiment important », déclare Kathryn.

Mais ce qu’il y a de plus important encore, c’est lorsque des amis vous rendent visite. Si vous connaissez une personne atteinte de la maladie d’Alzheimer ou d’une autre maladie cognitive, allez passer un après-midi ou une soirée avec elle. Apportez-lui un repas chaud, et constatez sur place ce à quoi sa vie ressemble.

Il existe de nombreux moyens de soutenir les familles comme celle de Kathryn, et de prendre une part active à la vie des personnes touchées. Vous pouvez également faire un don à la Société Alzheimer pour lui permettre de continuer à offrir des services de soutien et du financement pour la recherche. Parce que ces maladies ne concernent pas seulement les personnes atteintes, elles nous concernent tous. #TousContreAlz.

Puzzles for Good supports the Alzheimer Society

Puzzles for Good supports the Alzheimer Society

By: Kirsten Wreggitt, Chief Puzzle Constructor at Puzzles for Good

My Grandma made me pancakes in the shape of anything I could imagine – giraffes, Mickey Mouse, unicorns, and of course full moons. Those childhood breakfasts are cherished memories of family gathered together with Grandma at the center in her frilly apron. I remember that she laughed easily, always had a lap for you to sit in, and that she loved frogs. Of course, Kermit the Frog was her favourite, but I remember he was among many friends in the room I slept in at her house. That bedroom was filled with frog figurines on shelves covering each wall. There was no doubt that she was a fun loving person; a pretty perfect Grandma and a wonderful wife and mother too.

That is how I want to remember her, spatula in hand laughing with us at breakfast. Unfortunately, we also had to witness a slow and painful decline until we lost her to Alzheimer’s. At first she simply misplaced things or forgot a meeting, but over time it progressed to forgetting people, forgetting how to care for herself, and finally forgetting who she was. Such a terrible loss.

Many of us joke about forgetfulness and old age. I wish Alzheimer’s stopped with a little forgetfulness. The final stages of Alzheimer’s are no joke and it would be a wonderful thing if no other families had to witness or experience this loss of a loved one.

I am the owner of Puzzles for Good. It’s a social enterprise that creates word puzzles and shares the proceeds with organizations doing great work in the world.

I hold the memory of my Grandma dear to my heart and so I picked the Alzheimer Society of Canada as the recipient for this month’s puzzle pack.

Puzzles are great for brain health and are also so much fun! Get your Memory Puzzle Pack here.

Sharing a cup of support

Sharing a cup of support

beans

Holly Kotowich and Penny Leclair, employees at Pullan Kammerloch Frohlinger Lawyers, have hosted Coffee Break® events at their workplace since 2007. “We host a Coffee Break event every year because we have staff and employers who deal with Alzheimer’s disease. Every year, it seems we learn somebody close to us has dealt with Alzheimer’s,” says Holly.

Coffee Break events can be hosted at your workplace, home, school or anywhere you can serve coffee. Holly says hosting a Coffee Break increases awareness about Alzheimer’s disease and other dementias in her workplace. And better yet, it’s so easy to do!

Holly and Penny take over the office’s lunch room table on their event day, and set up coffee, dainties and donation boxes. “We ask a couple people for assistance and a lot of them help with baking. We have everything set up all day, and the event just runs itself,” says Holly.

The Alzheimer Society sets you up with a Coffee Break® kit that includes posters, coasters, a donation box, event tips, coffee cup cut-outs and more. “People here love the coffee cup cut-outs that recognize their donation,” says Holly. “We stick them up on the wall, and they love to write their names on them. Kids aren’t the only ones who like that stuff!”

This fall, make your coffee count by hosting an Alzheimer Coffee Break! Visit alzheimercoffeebreak.ca

Coffee Break® brings the community together

Coffee Break® brings the community together

Verna Mowat

For the past few years, Verna Mowat has been hosting a Coffee Break® event on her family farm in the Westman region of Manitoba. Despite wind and rain, people in the community venture down the gravel road to Verna’s farm, where a smile and a warm cup of coffee are waiting for each Coffee Break guest.

“Lots of people from the community all come out – from Cypress, Glenboro, even neighbours down the road. I think we had 35 people last year,” says Verna.

Running with the mantra that a Coffee Break event can be as big or as small as you like, Verna goes all out in getting everyone involved. She makes the most out of the Coffee Break event kit (supplied by the Alzheimer Society) by encouraging people to autograph her Coffee Break poster. Many of her guests love this gesture as it gives them an opportunity to write a personal message about who they’re supporting.

Verna’s dedication is born out of her desire to help make a difference in the fight against dementia. Her mother lived with it for 19 years and her sister is currently going through the mid-stage of Alzheimer’s disease. Verna has seen the effects first hand and is concerned about the toll it takes on families.

In addition to raising money through hosting a Coffee Break event, Verna sells home-made pottery pins at craft markets in her community. Contributors like her are integral to ensuring the Alzheimer Society is able to support those affected by dementia. We thank her sincerely for everything she has done.

This fall, make your coffee count by hosting an Alzheimer Coffee Break! Visit alzheimercoffeebreak.ca

Etching memories in stone

Etching memories in stone

As CEO of the Alzheimer Society of Windsor-Essex County, I am constantly reminded of the impact of dementia on the person with the disease and the families who care for them and grieve when they pass away.

Sally and Ted Lindsay - Groundbreaking
Sally and former NHL player Ted Lindsay

I was so pleased in 2006 when our Society decided to create a granite Monument of Memories in beautiful Jackson Park for our 25th anniversary to remember all those in our community who have lived with dementia. We offered the opportunity to anyone in the community to have the names of friends and family engraved on the monument as a permanent memorial. We charge a fee for the engraving and funds raised from Monument of Memories stays in Windsor-Essex to support the current programs and services we offer to people living with dementia in our community.

The response has been incredible with the whole community rallying behind the effort. Local business, labour groups, media, former NHL player Ted Lindsay, whose sister had dementia,  and local families – all impacted by the disease – all contributed. Over 250 people attended our unveiling ceremony in 2008.

We do the engravings once a year and continue to have a demand for spots on the monument.

It’s important to remember and be remembered. While we don’t have a cure yet, the Monument of Memories allows us to remember those who have passed away, and look after people now living with dementia and their caregivers.

monument of memories back view-2

If you would like to have a name engraved on the Monument, visit our website.

SallyFinal1-e1390614737179-300x240Sally Bennett-Olczak

Chief Executive Officer

Alzheimer Society of Windsor-Essex

My run for Alzheimer research

My run for Alzheimer research

Chris Dennis is the CEO of the Alzheimer Society of Ontario.

Even though I ran half a dozen marathons in my youth, 20 years on preparing for number seven wasn’t as easy as I thought. Since I received my son’s ‘Christmas gift,’ which entailed signing us both up for the Ottawa Marathon six months down the road, I have trained through rain and snow. And then, just to add a little pressure, I decided to turn my run into a fundraiser for Alzheimer’s disease research.

Why have one challenge when you can have two?

There have been bumps along the way. In addition to the coldest February on record, my doctor diagnosed me with bronchitis a week before the race. But with a puffer and some meds, he sent me on my way. I was ready..err sort of.

And with so many people rallying behind my fundraising effort, I more than doubled my goal and raised $13,000. Expectations were high and I didn’t want to let everyone down.

On May 24, I ran my marathon. It was gruelling and a lot slower since the last time I completed one. Having never cramped up in my entire life, I got my first at the 13 km mark. Such fun! Four hours on the pavement is a lot more difficult than the three I used to clock in days past. And my son beat my time by 40 minutes, leaving no doubt that the torch has been passed.

I ran my race but will stick to 10 kilometre races for the future. But it’s an experience I won’t soon forget.

ASO Marathon Chris DennisChris Dennis

CEO, the Alzheimer Society of Ontario

Al Burridge was a true Dementia Champion

Al Burridge was a true Dementia Champion

Al-burridge-2When the Alzheimer Society of Ontario began the Champions for Dementia initiative in 2010, we were seeking to engage people with lived experience of dementia in advocacy activities with their Members of Provincial Parliament (MPP) and the Ontario government.

I remember receiving notice from the Alzheimer Society of Oxford that they had identified a perfect candidate to be their Dementia Champion – Al Burridge.

From day one, Al was a model Dementia Champion. Soon after joining, Ontario had an election. While Al was volunteering at a local fundraising and awareness event known as Coffee Break®, staff member Beth Haas remembers he had a natural ability to identify electoral candidates and talk to them about dementia. “The weather was good that day so Al and I set-up outside for a few hours during Coffee Break. Al not only recognized the candidates, even the lesser-known ones, but nabbed them to tell them about dementia and how the Alzheimer Society is advocating for improved care. He was charming, well-spoken and literate; no one could dismiss him or sidle off! ” remembers Beth.

Locally, Al was involved as a spokesperson. He met with his MPP several times, was guest speaker at the Alzheimer Society of Oxford Golf tournament, and was MC at the intergenerational Choir performance. He also spoke with media, including Heart FM, Rogers TV, and local newspapers.  Whatever the task, Al assumed his role with great gravity and earnestness. He always reviewed what the present focus was, ensuring he understood the message so he could convey that to his listeners. He was 100% convincing because he truly believed the message.

He recognized that to effect change he needed to be heard at both the provincial and national level. He worked with our National office to develop an ethical framework for engaging people with dementia in Alzheimer Society work, and he had recently expressed interest in joining an advocacy group led by people living with dementia called the Ontario Dementia Advisory Group. This group is focused on the development of an Ontario Dementia Strategy and actively advocates for the engagement of people with dementia in public policy decision-making that will affect their lives.

al-burridgeOn April 10th of this year, Al and staff member Robyn Fox met with their MPP to personally invite him to the Alzheimer Society Queen’s Park Day. The week after he was scheduled to meet with the Ontario Dementia Advisory group for the first time, but I received a call from his wife Maureen (Mo) advising that Al would be having surgery and wouldn’t be able to participate as anticipated but that he would like to be kept informed of the work underway. On April 27th Al went in for surgery, and sadly he did not recover. He passed away on May 14th.

Al was an impressive and active advocate for people with dementia for many years. He gave of his time so liberally and always gave thanks to his wife Mo, without whom he could not have organized himself as effectively.

Beth says it best – “Al was rarely without a smile or an anecdote. He was hospitable and reflected frequently on life’s little quirks finding all around him something of interest and curiosity.”

He was a wonderful example of someone living well with dementia.

Thank you Al. We miss you already.

Delia Sinclair Frigault – Public Policy and Stakeholder Relations Coordinator
Alzheimer Society of Ontario

Shelley Green – Executive Director
Robyn Fox – Volunteer Companion Coordinator
Beth Haas – Behavioural Support Worker
Alzheimer Society of Oxford

Run like the wind for Alzheimer’s

Run like the wind for Alzheimer’s

“Thank you, Son,” is what I should have said. “What a great reason for some quality father/son time,” would have been better. Instead, I cried, “You did what?!”

That was Christmas morning 2014. My eldest son had signed us both up for the Ottawa Marathon. I was scheduled to run 26 miles, or 42 km, in less than 5 months.

I’m in my 50’s, I haven’t run regularly for over 20 years and I’m about 20 pounds heavier since my last marathon in 1995. I’d better take this seriously. Of course, training with my son motivates me; staying healthy to take on whatever other surprises he will send my way as he makes his way through life does as well; and using this day to contribute to dementia research is the crowning piece.

No cure or treatment exists. There are no ways to prevent the disease. Yet, I have learned I can do something about dementia:

  • I initially set a fundraising goal of $5,000 to support dementia research, which I will match. As I’m writing this, my goal has been met… and surpassed! Thank you very much for your support. Now, let’s see how much higher we can go! 
  • With March being Brain Health Awareness Month, my colleagues have reminded me that physical activity is one of the four lifestyle choices (including social and mental stimulation, and healthy diet) that are good for you. And they’re good for your brain too, encouraging the development of new cells and new connections within the brain.
  • And according to the Ontario Brain Institute, being physically active is associated with a 38% reduced risk of developing Alzheimer’s disease.

As I pursue these goals of staying healthy and raising money for dementia research, I have added to my training schedule a long-run every Saturday. Even mother-nature is urging me forward: this harsh winter of ours has offered balmy single-digit temperatures for most of those Saturdays with double digit lows for the balance of the week. I’ve actually started to enjoy running again, especially when I get in the zone, and realize I’ve just run another 10 k without thinking about running at all.

Not such a bad Christmas gift after all, right?

I would go to the ends of the earth for my family, so 42 kilometres seems quite reasonable. On that Christmas morning, I had no idea that his gift could mean so much for so many people.

imageWriter.aspxChris Dennis is the interim CEO of the Alzheimer Society of Ontario. Though he has many years of experience in the health-care sector, these past few months have offered him a unique window into this disease and he is committed to raising as much money for Alzheimer’s care and research as possible.