A Message From The Founder | |
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I need Parkinson’s like I need another hole in my head! And yet, that’s exactly what is needed, times two if you please. It is straight up brain surgery yet I’ve heard it described as akin to ‘day surgery’ as far as Neuro surgery in general is concerned.
Why Am I Considering Deep Brain Stimulation (DBS) surgery?
Having been asked to articulate my reasons for considering Deep Brain Surgery (DBS) I find that as I approach the keyboard, I am somewhat befuddled. The decision has been made, the various hoops to qualify have been cleared and my wife and I have said out loud to our friends and family that we are doing this; we simply await a surgical date. But now that I come to write down my reasons, I find myself asking, ‘why exactly am I doing this?’
I mean who in their right mind asks to have another hole put in his head let alone two? This is a bizarre proposition at best and at worst is somewhat terrifying. What is being suggested is nothing short of brain surgery where two holes will be drilled in the top of my head and an electrode will be pushed down through my grey matter coming to rest just above the thalamus. Then those same electrodes will be threaded down along the right side of my neck and into my chest. At this terminus a small battery pack will be placed under the skin and hooked up to the electrodes. In time the device will be turned on and I will begin to receive a small stimulus to the brain. If all goes well this simple machine could potentially take away a lot of my Parkinson’s symptoms.
Humans. We are frail creatures. We show up at our jobs cranky some days, having slept poorly the night before or having fought with our spouse before leaving the house. Because of these things we show up to work and, at times, perform at a less than optimum level. This includes occupations such as neurosurgeons and nurses; I having been the latter for over two decades. Having thus seen the frailties of our species and the negative outcomes sometimes produced by them (yes, even in hospital!). I am at best a reluctant patient reticent to be ‘put under’ and then to undergo the knife, or as it will be in this case, the drill.
Yet, here I am well on my way to having this device placed in my body that reminds me of the old 1960’s sitcom, “My Favourite Martian” in which the martian had, in addition to several super powers, metal antennas that would sprout from his head on command. Yes, I know different but the same!
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If it is true that we are frail creatures it is equally true that we are ever hopeful. Hopeful for a better day tomorrow and a brighter future to come. I am hopeful that DBS will at least stop the progression of symptoms or, dare I hope, eliminate a number of them. If we are being honest here then I have to include that I am also praying that this is not one big mistake that makes matters worse.
So then, to the actual question of why I would choose this course. I have had a privileged position from which to consider this question of pursuing Deep Brain Stimulation. I have had the opportunity to speak directly with dozens of people from around the world who have had the surgery. On the whole, my very non-scientific survey has left me quite positive. The majority seem to have fared well with the device compared to those whose response has been benign. By benign I mean it has not really helped much but neither has it done further harm. There are certainly those for whom it has not worked and has been troublesome to varying degrees. These latter cases being far fewer than those who have fared well or have experienced a benign response.
In short, I have done my best to look into the good, the bad and the ugly of this procedure. I come away confident that it is a reasonable decision to move forward.
I remain hopeful that the procedure will maintain my quality of life if not improve it. I respond very well to my medication and this is a strong indicator for moving forward. I have been told by my physicians that I am an ideal candidate. In this light we have chosen to move forward in the hopes of creating a better tomorrow and a brighter future. We, like you, are ever hopeful and our hopes are for another several years of managing this disease and living well with it.
Live Your Best!
Tim
Read More on DBS:
- https://www.michaeljfox.org/deep-brain-stimulation
- https://davisphinneyfoundation.org/deep-brain-stimulation-dbs-resources/
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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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Early Parkinson's Course offered by The Movement Disorder Clinic - Begins October 3 | | |
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The Movement Disorder Clinic is presenting a bi-annual, Parkinson’s disease course to help people who are newly diagnosed with Parkinson’s and their families/friends learn about what PD is and how to live well with it.
Join a FREE 4 week course on Tuesdays from 1:30-3:30pm (see poster or click "learn more" for dates). These sessions may be virtual or in person depending on the situation. You will be notified well in advance.
To register: call 204-940-8427 or email kwilliams3@mdc-dlc.ca
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South East Manitoba, Here We Come!
We’re Streaming Our Live Classes on Location Near You!
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Happy October Everyone,
I am excited to share U-Turn Parkinson’s latest venture in increasing accessibility of our programs for each individual living with Parkinson’s in Manitoba!
Starting this October, U-Turn Parkinson’s will be piloting a project to increase awareness and accessibility of our free-of-charge health and wellness programming in South East Manitoba. We are working with the Pat Porter Active Living Centre and local volunteers to stream online classes at a central location in Steinbach, where participants can engage in Parkinson’s wellness programs in a group setting!
This is U-Turn Parkinson's first rural outreach project and we are extremely excited to connect rural Manitobans to our high-quality, no-charge virtual physical activity and wellness programming, to supplement the amazing support group by Parkinson’s Canada already happening out of the centre.
Online Classes are Great… but my Internet/Computer Skills Aren’t!
Although COVID-19 in some ways forced everyone to become more comfortable with the use of online programs like Zoom, many of us still face barriers when trying to access what we need online.
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We want to tackle these barriers to participation and provide the added benefits of group engagement by trialling an online satellite community in Steinbach.
We will be streaming our live classes at the Active Living Centre in 8-week blocks:
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Power Stretch: Combines functional strength, core stabilization, and balance exercises with breathing and stretching to increase range of motion, balance, and agility.
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Empower-U: A full-body workout combining functional strength training, stretching, range of motion, coordination, balance, and agility exercises.
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U-Tunes: Incorporates breath work, vocal warm-up, and singing/music activities to promote coordination, rhythm, and vocal strength.
Classes Begin:
October 11th, 2023, with the 8-week block of Power Stretch classes on Wednesdays at 10:00-11:00 AM.
*Our next class time will be announced at the end of the first block*
Location: Pat Porter Active Living Centre in the Northview Room - 10 Chrysler Gate, Steinbach
Register: call 204-510-4869 or email info@uturnpd.org to reserve your spot!
Don’t just survive, THRIVE this Fall!
Taylor Devlin
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Thank you to Canadian Parks & Recreation and the Manitoba Government for funding in support of this program! | |
U-Turn Parkinson's Family Spotlight | |
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Emily Klassen - U-Turn Parkinson's Practicum Student
When did you become a part of U-TurnPD and how did you get started with us?
I recently started a student placement with U-Turn Parkinson’s at the beginning of September and will be working with Taylor and Genevieve until December. I have the opportunity to work at U-Turn Parkinson’s to expand my education by applying concepts that I have been taught in class and putting them into practice. I chose U-TurnPD as my fieldwork placement because I was intrigued by the wide range of services they provide as a non-profit organization. I have a personal connection with Parkinson’s, as I have a family friend who has been diagnosed for over 10 years.
What are you going to be working on while you’re with U-TurnPD?
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During my time at U-Turn Parkinson’s, I will be working as a Program and Events Coordinator to assist staff in daily program administration, service evaluation, event planning, and volunteer training. I have been enjoying being a part of classes such as Empower-U, Golden Gloves, and Dance with Parkinson’s so far! I will also be contributing to specific research areas such as gait training and physical activity methods.
What are you most excited about with joining the U-TurnPD family?
I am excited to build new relationships and meet people at U-TurnPD including staff and members! As a student, I still have a lot to learn about Parkinson’s disease and how it affects people in different ways. It is inspiring to see people in classes using physical activity to maintain a healthy lifestyle.
Fun facts about Emily:
- I have a dog named Nash who is a husky-poodle mix
- My hometown is Morden, Manitoba
- I love water-sports and being on a lake
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U-Turn Parkinson's will be closed and there will be no classes Monday, October 9, for thanksgiving.
We'll see you back in class Tuesday, October 10. Have a wonderful thanksgiving!
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Reminder! Gym Shoes Required | |
As the leaves begin to change, please remember to bring indoor shoes with you to class so that we don't track in mud, leaves or water onto our gym floor.
For those who are able, please change your shoes in the foyer before going upstairs to the gym. For those using the elevators, please use the chairs outside the gym to change shoes.
Thank you!
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Celebrating World Occupational Therapist Day and How OTs Can Help People with Parkinson’s
World Occupational Therapy Day is a celebration of a profession dedicated to improving people's lives by enhancing their ability to engage in everyday activities. This global event, observed annually on October 27th, highlights the role of occupational therapy in promoting health, well-being, and a higher quality of life for individuals of all ages and abilities.
Occupational Therapists (OTs) can play an important role in helping individuals with Parkinson's to maintain their independence, manage symptoms, and improve their overall quality of life. OTs work to help their clients navigate any barriers they may face when participating in valuable activities so that you can be who you want to be and live well.
Here are some of the ways that an Occupational Therapist could help a person with Parkinson’s:
1. Functional Mobility Training: Occupational therapists help individuals enhance their mobility and daily life by providing strategies to improve balance, coordination, and posture.
2. Fine Motor Skill Training: Parkinson's can affect fine motor skills, making it challenging to perform tasks like buttoning a shirt or using utensils. Occupational therapists use exercises and adaptive strategies to improve fine motor skills.
3. Home Modifications and Assistive Devices: Occupational therapists can help create an accessible environment for individuals with Parkinson's.
If you are interested in finding an Occupational Therapist to join in your wellness journey, and want to learn more about Occupational Therapy, visit the resources below!
Manitoba Society of Occupational Therapists
https://www.michaeljfox.org/news/ask-md-occupational-therapy-and-parkinsons
https://hsc.mb.ca/adults/our-services/occupational-therapy/
https://caot.ca/site/findot
https://parkinsonsnewstoday.com/occupational-therapy-for-parkinsons-disease/
https://davisphinneyfoundation.org/occupational-therapy/
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We're hiring a Music Therapist! 🎶
The Music Therapist will be responsible for planning, implementing and evaluating a group music therapy program that is appropriate to the social, emotional, spiritual, physical and cognitive needs of individuals living with Parkinson’s disease.
To be effective in this role, the Music Therapist will need to multitask by playing music, interacting with members, and making general participant assessments simultaneously. Top candidates will be meticulous, compassionate and have strong problem-solving skills!
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U-Turn Parkinson’s October Bingo Challenge: Ignite Your Wellness Journey This Month!
October has arrived, and with it comes a golden opportunity to reignite your wellness journey while having a blast. This October, U-Turn Parkinson’s presents a dynamic BINGO challenge designed to strengthen your wellness routine and encourage you to try new things!
What's the Challenge?
Introducing the U-Turn Parkinson’s October BINGO. Instead of dreading those chilly autumn mornings, you'll be looking forward to each day with excitement.
Here's how it works:
1. The BINGO Card: At the beginning of October, we will put a big BINGO card at our gym for everyone to see.
2. Complete the Squares: The BINGO card will have a variety of challenges available for you to complete throughout the month of October. This can include joining classes, leading cheers or meeting a new friend!
3. Write Your Name on the Square: Every time you complete a challenge, write your name on the appropriate square! Try to get all 5 in a row in any direction!
4. Win!: Be one of the first 5 people to reach all 5 in a row and receive a prize! (Extra prize for the first person to complete all of the challenges!)
Why do the BINGO Challenge?
Stay Motivated: Sometimes, the hardest part of maintaining a wellness routine is staying motivated. With this BINGO, every challenge you accomplish brings you one step closer to reaching your goals, giving you that extra push you need.
Discover New Classes: This challenge is your chance to join a variety of our classes and find what you love.
Community and Fun: At U-Turn Parkinson’s, we're all in this together! Trying new things can mean that you meet new people who share a similar journey. Plus, who doesn't love a little friendly competition?
The challenge begins on the first day of October, so mark your calendars and prepare for a fun month of trying new things and making new friends! Let's make this October a month of victories, both on the Bingo card and in our wellness pursuits. Get ready to shout "BINGO" and celebrate!
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U-Turn Parkinson's October Blog | |
Women and Parkinson's Disease | |
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October is Women’s History Month in Canada. This is an opportunity to celebrate the outstanding achievements of women in our own country, as well as continue to empower women and girls around the world. Sex and gender differences can have a significant impact on health and are important to consider when it comes to Parkinson’s disease and the care partners of people living with the disease. It is important to explore the difference that gender can have on Parkinson’s to lead to a more personalized and effective treatment plan targeted for males or females.
How does PD in women differ from PD in men?
40% of people living with PD (Parkinson’s disease) are women. The risk of developing Parkinson’s increases with age, and there is evidence to suggest that PD may develop later in women than in men. Women also tend to have a faster progression of the disease. Symptoms can vary greatly, and women can commonly share different symptoms than men. Common initial symptoms in men are changes in balance including freezing of gait. Women are commonly first diagnosed with a tremor as their dominant symptom and increased rigidity. Women are also more likely to develop postural instability with their diagnosis.
Hormonal influence on PD
The treatment for Parkinson’s disease is the same for men and women. However, women may respond differently to medication. Physicians say that they find it more difficult to fine-tune Parkinson’s medications for women than for men. This is largely due to the fact that women often experience many swings in symptoms depending on factors such as hormone changes and family responsibilities. Even small changes in medications or schedules can cause women to experience noticeable changes in symptoms.
Dyskinesias (involuntary muscle contraction) is the most reported side effect. These involuntary, continuous muscle movements affect large muscle groups such as the arms, head, trunk, and legs. 74% of women experience worsening of their symptoms around menstruation regarding rigidity, bradykinesia (slower movement), and dystonia (muscle contraction). In the weeks prior to a woman’s menstrual bleed, estrogen levels drop which affects the production of dopamine. Some medical centers are using extra PD medication to reduce the impact of the drop in estrogen around menstruation. However, 87% of women say their neurologist has never discussed the effect of hormones on PD symptoms. There seems to be a lack of awareness among neurologists on the impact that hormones have on PD symptoms around menstruation, perimenopause, and post-menopause.
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Tracking Symptoms
When you live with Parkinson’s, everything matters from your diet, your exercise and your sleep, to when you take your medications. Richelle Flanagan says that “keeping track of it all can be a full-time job, especially when you’re trying to hold down a job and look after kids or grandkids, on top of living with a disease that impacts how you move and feel.”
Richelle Flanagan is a co-founder of a Parkinson’s management app called My Moves Matter. Using an app can be beneficial to monitor symptoms and aspects of daily activity such as exercise and sleep. This can be especially helpful for women to track how symptoms may differ throughout their cycles. If common patterns are found, this should be brought up with your healthcare provider to identify possible medication adjustments.
Non-motor symptoms
Non-motor symptoms that are commonly affected by the menstruation cycle, include increased anxiety, fatigue, and apathy. It has also been found that women with PD have significantly less social support, more psychological distress, and worse self-reported, health-related quality of life at initial PD care visits. Women are less likely than men to have informal caregiver support (support from spouse, family, or friends). As a result, more women use paid caregiver services than men. Female care providers are also at risk of experiencing anxiety and depression due to their increased responsibility. Self-care is critical for those who tend to put everyone else’s needs in front of their own. Examples of prioritizing your well-being could include setting aside time to exercise in the morning, practising five minutes of mindfulness while you drink your coffee or joining a support group.
Although women diagnosed with PD are a sizeable portion of the PD population, their specific needs are still partially overlooked. The vast majority of therapeutics that are used to manage PD symptoms today are based on research from clinical trials that were conducted with mostly male research participants. For anyone with PD, advocating for oneself is important. It is beneficial to be familiar with your symptoms, your medications, and to know which symptoms are most bothersome. It's also important to speak up, ask questions, and share concerns with your healthcare providers so that you can optimize your treatment together.
Additional Resources
PD Avengers : https://www.pdavengers.com/blog/women-and-pd
Healthline: https://www.healthline.com/health/parkinsons-symptoms-men-women#symptoms
Michael J. Fox Foundation: https://www.michaeljfox.org/news/ask-md-being-woman-having-parkinsons-unique-experiences
Parkinson’s Foundation: https://www.parkinson.org/library/fact-sheets/women#:~:text=Key%20Facts,most%20frequently%20reported%20side%20effect
My Moves Matter: https://www.irishtimes.com/health/2023/01/12/app-aims-to-help-women-with-parkinsons-disease-improve-their-quality-of-life/#:~:text=
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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: | | | | |
