A Message From The Founder | |
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I would once again like to share with you a transcript from one of my speeches that I give when visiting Parkinson’s groups across North America. It is a study on the need for those of us living with Parkinson’s to become athletes. However, I would like to add to that the term ‘artists’ as specifically related to dancers but more on that momentarily…
“There are few things that we can control when it comes to Parkinson’s. We can’t control that we have the disease. We can’t just shake it off and get rid of it anytime we please.
However, once we move beyond the acceptance of this initial reality, we discover that we do have control over the next and most important aspect of the disease. We do have control over how we choose to live with the disease. And this comes down to our attitudes.
My movement disorder specialist played a critical role is shaping my attitude right from the outset. He said to me, “Tim you’re doing as well as you are because of how you have looked after yourself all these years. He followed that up with the statement, “If there was one thing I could do for all my patients I would turn them into athletes”
Having come in to his office with the fear that I would have to stop exercising I was thrilled to hear him tell me to continue what I was doing and if possible, do more.
These words motivated me and ultimately led me to the conclusion that our pursuit of wellness is indeed the cornerstone in our quest to end Parkinson’s. For you see without a healthy community there will be far too few to take part in research studies, to advocate, raise funds and give leadership.
Now, I know that some of you are smiling, even smirking. I can see your eye rolls and even hear your thoughts, “What? Me, an athlete?” Yes, you, an athlete.
What is an athlete? Google the word and you will get a broad range of definitions that encompass this thought, “Someone who has been trained to compete…generally in sports”.
Daily you and I are in a competition with Parkinson’s. Will it let me walk today, stand, write, type, think clearly and on and on. We daily make decisions; how much can I push back, how much pain can I take, what will PD get today, what will I take back!
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Like an athlete we surround ourselves with coaches, trainers, counsellors, nutritionists, physicians; a broad team of specialists whose only goal is to get us across the finish line as champions.
We set goals, we refine plans, we adjust routines, we adapt, we change, but we remain laser focused on the ultimate goal.
We learn to do things we’ve never done before…like sports. Many of my fellow athletes at U-Turn Parkinson’s never exercised a day prior to being diagnosed. Now they have made the mantra ‘exercise is medicine’ a part of their DNA and daily prove their athleticism.
To be clear our pursuit is not purely in the physical realm. Like any world class athlete, we control what makes its way onto our daily calendars.
We are continually learning & improving our knowledge of our competition and our ‘game’. We ensure that we surround ourselves with a community of family and friends who support us and we give special care to our emotional and spiritual wellbeing.
In short, we continually train ourselves for the daily competition we wage with PD.
We are indeed Athletes and Parkinson’s is our World Series, our Stanley Cup, our World Cup, our Super Bowl and the trophy we are competing for is our very lives.”
I have often felt that there was something missing in the terms used to describe those of us with PD. Terms like ‘fighter’ and ‘warrior’ are often seen in a negative, too aggressive fashion. Now, in truth, there is really no need for the use of any moniker but I think you will agree that it can be fun, it can build camaraderie and community.
It is in this spirit that I add to ‘athlete’ the term ‘artist’ as in dancers. We have recently added Dancing with Parkinson’s to our roster of classes and this idea of artists has come out of our many discussions. I would have you look back at my transcript and replace the word athlete with artist and you will see that it fits nicely. All that I have said about athletes can be applied to artists.
Artists & Athletes, our own version of ‘AA’ including the steps needed to persevere with Parkinson’s. So, whether you run, cycle, box, swim or dance you have a place with us here at U-TurnPD. We are all on the journey to becoming better versions of ourselves while we live with PD.
There is a lot of fabulous information in this month’s newsletter. Please take special note of our activities around Giving Tuesday this year. It's a wonderful opportunity for all of us to find ways of giving back and doing good on this special day, throughout the holidays and, indeed, all year long!
Live Your Best!
Tim
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Join Our Circle of Champions
What is the Circle of Champions? It's that group of individuals who see and appreciate the day to day needs of U-Turn Parkinson’s and choose to donate on a monthly basis.
They are often the unsung hero, the bedrock on which our centre is held unshaken. They understand that the fundamentals are not ‘sexy’, that the essentials are not glamorous. But they understand that they are fundamental and essential none the less.
They get ‘it’, they understand, they are the ones who will lock arms with you and stand with you no matter what. This group is generally not made up of the majority, they are typically the few.
Are you a champion? Will you be our Champion? Be our foundation to an unshaken future!
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Walking Improvement in Parkinson’s disease Research Study
Physical Therapy and Neuroscience researchers from the University of Manitoba are looking for both individuals with Parkinson’s disease and age-matched healthy control to participate in a clinical trial to evaluate the benefits of various treadmill and cognitive exercise programs in Parkinson disease.
For more information and to participate in the study, please click here.
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Join Us in Doing Good This Nov 28!
November 28th is Giving Tuesday, a global movement with hundreds of millions of people participating in doing good in whatever ways they can.
With active movements in over 85 countries, Giving Tuesday is meant to inspire generosity around the world, with a common mission to create a world where giving is a part of everyday life. If you can show generosity and share kindness you have something to give this Giving Tuesday!
As someone who cares deeply about the Parkinson’s community, there are many ways you can do good this Giving Tuesday:
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Join our Circle of Champions: Our monthly donors truly are our champions! Committing $25, $50, $100 or whatever amount you’re comfortable with on a monthly basis helps us continue to operate on a free-of-charge basis for all. As always your one time donation is greatly appreciated as well!
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Join our U-Crew: Our volunteers help our coaches provide safe and fun classes for all our participants. Care partners, students, family members and anyone who has an interest in encouraging people living with Parkinson’s in their pursuit of wellness are invited to join us!
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Give Encouragement: Money and time are invaluable but so are your words, your smile and your spirit. Take a moment to check in with someone you haven’t seen for a while, introduce yourself to someone you haven’t met yet or spend a few extra minutes after an event connecting with the person next to you. Doing good can be as simple as giving your time and attention.
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Get Involved: Use your individual skills to help us further our mission of empowering people living with Parkinson's! This could be writing a letter of recommendation for a grant, joining our Community Advisory Committee, volunteering for a fundraising event or contributing a blog post to our community blog (coming soon!). Use the contact info at the bottom of this email to let us know how you'd like to get involved.
However you choose to participate in Giving Tuesday on November 28th, you’re appreciated! Thank you for being a part of our community and for continuing to support all those living well with Parkinson’s.
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U-Turn Parkinson's Family Spotlight | |
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Karen Doell - Olympic Athlete and Person with Parkinson's
Karen Doell from Winkler, Manitoba has a unique story from being an Olympic athlete to finding out that she had Parkinson’s Disease at the age of 36. She represented Canada’s Olympic Women’s Softball team in the Atlanta Olympics 1996.
She recalls how her life changed one day by sitting in a doctor’s office and finding out that the explanation for the strange twitching in her hand was Parkinson’s disease. Karen is a retired physiotherapist, so she was aware of how Parkinson’s affects those diagnosed.
For a competitive athlete, being diagnosed with Parkinson’s disease meant that she would have to change her lifestyle and that her enjoyment of sports was threatened. She says, “the movements of my body and the ability to control them were the core of my enjoyment in life.” She had to shift her mindset and goals.
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Importance of Physical Activity
Karen highlights the importance of physical activity and has been able to maintain an active lifestyle despite the challenges Parkinson’s has given her. She is thankful for a slower progression of her disease. “I find it helpful to find a form of exercise that you enjoy”. For Karen this means keeping busy with recreational sports. She explains that staying active has helped regain movement function.
Advice for People with Parkinson’s Disease
Advice that Karen has for people living with Parkinson’s Disease is to realize that the disease doesn’t define you. There is so much more to every person who has Parkinson’s disease and try to focus on other factors of your life. She says that it is also important to realize that Parkinson’s Disease can look different for everyone.
Karen participates in fundraising efforts for Parkinson’s and is an advocate in raising awareness. She had the opportunity of lighting the 2010 Olympic Relay Torch. In the past she has kept busy with activities such as hockey, golf, coaching, and singing in a band.
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Hello Early Birds - Golden Gloves has Changed Times! | |
We have changed our Wednesday Golden Gloves class time!
This class will now take place every Wednesday from 9:00-10:00AM.
We hope that this new time will be more convenient for everyone!
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Update on Steinbach: Now It’s Really Worth the Trip!
You may remember that U-TurnPD planned to live-stream our online classes to a central location in Steinbach in an effort to reach different communities. We are happy to say that we have had a very successful first class! We were so thrilled to see multiple people join us at the Pat Porter Active Living Centre to tune into our Power Stretch class with Jordyn on Wednesday morning. We are excited to welcome more people into our U-Turn Parkinson’s family as we continue to host these classes in Steinbach!
Do you know someone in Steinbach who would be interested in joining?
Let them know that beginning on October 11th, the 8-week block of Power Stretch classes will occur on Wednesdays at 10:00-11:00AM! The next class time will be announced at the end of the first block. We will be facilitating these online classes at the Pat Porter Active Living Centre in the Northview Room at 10 Chrysler Gate, R5G 2E6.
To register email info@uturnpd.org or call 204-510-4869 today!
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Kick Those Winter Boots Off and Step into Fitness with Clean Shoes this Winter! | |
In an effort to keep the gym floor clean and safe, please remember to take off outdoor shoes before entering the gym.
Coats, outdoor shoes, and bags can be left in the main foyer of the church, or on the hangers outside of the gym doors on the second level. We appreciate your cooperation as we maintain the cleanliness.
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Calling all lovers of music!
I’m looking for a gifted leader to help our community strengthen and protect our voices through song.
Interested? Call Tim at 204-781-2327 or email tim@uturnpd.org
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Diving Deep: Deep Brain Stimulation for Parkinson’s Disease | |
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What is Deep Brain Stimulation?
As a person with Parkinson’s, it is quite likely that the topic of Deep Brain Stimulation (DBS) has come up. This procedure may sound really interesting and many people have shared their stories with DBS. Recently, a well-known CBC news host has openly shared the effects of their DBS operation and how that has affected their daily life. It is important to have all the facts presented in order to understand what DBS is, how it could help with Parkinson’s, and the pros and cons of the procedure. As with most topics, please speak with your doctor to learn more about DBS if you are interested in exploring it further.
So, what is DBS? It's a surgery where small wires, called electrodes, are placed in your brain. They also put a small device, similar to a pacemaker, in your upper chest. This device is called an Internal Pulse Generator or IPG. The IPG's job is to send electric signals to your brain. These signals help control any unusual brain activity that might happen because of Parkinson's. DBS has shown to be potentially very effective in treating problems like tremors, stiffness, and slowness. It can be a helpful tool for managing some of the challenges that come with Parkinson's.
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Pros and Cons of DBS
Since DBS has become an increasingly used treatment option for people with Parkinson’s, it is really important to understand the advantages and disadvantages of the procedure.
Pros:
· Improved Symptom Control: DBS surgery can significantly reduce the symptoms of Parkinson's disease, such as tremors, stiffness, and difficulty moving.
· Less Need for Medication: There may be side-effects that accompany medication. DBS may help to reduce the use of medications and their side-effects.
· Adjustable Treatment: The settings for the DBS device can be customized for each person. This means doctors can fine-tune the treatment to match your needs, which can lead to better results.
· Reversible and Flexible: If the treatment isn't working well or is no longer needed, the DBS device can be adjusted or removed.
Cons:
· Surgical Risks: DBS surgery involves a brain surgery, which always comes with some risks. These risks can include infection, bleeding, or complications related to anesthesia.
· Possible Side Effects: While DBS can improve symptoms, it can also have side effects, such as changes in speech, mood, or cognitive abilities.
· Not a Cure: DBS doesn't cure Parkinson's disease; it manages the symptoms. Some people may have high expectations and need to understand that it's not a complete fix.
Deep Brain Stimulation is a promising treatment for Parkinson's disease, and it can bring significant relief to many people. However, it is very important to remember that there are also surgical risks, and the possibility of side effects.
Since Parkinson’s affects everyone differently, the way DBS works can also be slightly different for each person. Just because it works for one person, doesn’t mean it will work for everyone. A careful evaluation by a medical professional and a discussion of the pros and cons are necessary for anyone considering DBS.
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Osteoporosis and Parkinson's Disease | |
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November is National Osteoporosis Awareness Month.
Osteoporosis affects many people with Parkinson's Disease. Up to 91% of women and 61% of men living with Parkinson’s disease also experience symptoms of Osteoporosis. Keeping our bones healthy is an often overlooked but very important part of our overall health and wellness.
What is Osteoporosis?
Osteoporosis is the reduction of bone mineral density causing bones to become weaker and more fragile. People with osteoporosis have an increased risk of fractures specifically in the arm, hip, and spine. This puts people at a higher risk of falling and injury due to postural instability. Although the natural aging process causes bones to weaken, there are several things we can do to positively impact our bone health and strengthen bones.
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Who is most likely to be affected?
Osteoporosis affects over 2 million Canadians. It is more common in women than in men. 1 in 3 women and 1 in 5 men will suffer from an osteoporosis fracture during their lifetime. Osteoporosis normally occurs in people over the age of 50.
Many people don’t even realize they have osteoporosis until they break a bone. Our bones achieve a peak bone mass and are the strongest around the age of 30. After the age of 35 bones begin to break down faster than they build up. Even in a healthy person, bone density decreases throughout life at about 1% each year.
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However, there are lifestyle choices that we can make to prevent and slow this process down. Other factors that put someone at risk for osteoporosis include having a history of falls, high alcohol consumption, low calcium and vitamin D intake, family history of osteoporosis, low body weight, and an inactive lifestyle.
How do we keep bones strong?
Nutrition
Nutrition and exercise are the most important in maintaining strong bones. The absorption of important nutrients like calcium is reduced if you have Parkinson's disease. This is why Parkinson’s disease and osteoporosis often co-occur.
Calcium is important for regulating heartbeat and nerve signals. If the body doesn't get enough calcium it takes it directly from the bone which makes bones thinner and weaker. Dairy products such as yogurt, cheese, milk, and eggs contain calcium, as do almonds, broccoli, spinach, kale, and soybeans.
The body also needs Vitamin D to be able to absorb calcium. Vitamin D can be found in tuna, salmon, trout, egg yolks, liver, and mushrooms. Supplements and vitamins can also help to control calcium and vitamin D levels.
Exercise
Exercising with weights can strengthen bones, slow mineral loss, activate bone-forming cells, and build muscle. As your muscles move during resistance training repetitions, they put stress on your bones. As a result, your bones become stronger and denser. Other benefits of exercise include improved balance, improved posture, and lessening pain. It is never too late to begin exercising to see the benefits, even if you already have osteoporosis.
Strength training, balance exercises, and aerobic exercise should all be used together for the best results. Strength training may use body weight against gravity, weights, or elastic bands to provide resistance. This includes exercises for the legs, arms, chest, shoulders, and back. Balance exercises can include tai chi, dancing, and walking on toes. Aerobic exercises should increase your heart rate such as brisk walking, jogging, or dancing. Higher-intensity exercises like jumping and running can also be beneficial.
Some movements to avoid osteoporosis include high-impact exercises and jerky, rapid movements. More effective exercise should be slow and controlled movements. Bending and twisting at the waist should also be done carefully to avoid injuring the back. Speak to your healthcare provider if you have questions about your bone health.
For more information
https://davisphinneyfoundation.org/osteoporosis-and-parkinsons/
https://www.mayoclinic.org/diseases-conditions/osteoporosis/in-depth/osteoporosis/art-20044989
https://osteoporosis.ca/exercise/
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Become a PD Avenger today!
You can join the Global Alliance raising their voices for those living with Parkinson's Disease by clicking HERE.
PD Avengers is not a charity nor affiliated with any one organization. Their mandate is to use the value of combined effort, influence and skills to prove Parkinson’s matters and to build a sense of real urgency to end this disease.
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We are so grateful for all funding provided to U-Turn Parkinson's. Sponsorship & Grants Provided by: | | | | |
