MS Wellness Toolkit
Twenty years ago, there were no disease-modifying therapies for MS. Now, there are 14. It’s up to each person and their healthcare team to determine which, if any, is right for them. To help from a wellness perspective, the MS Society reached out to those living with MS to determine common threads in managing – and thriving – with this disease. A few wellness themes emerged:
1) Move Your Body – Exercise is key. For most people (with or without MS), eight hours a day in the gym is not realistic, but that doesn’t mean you do nothing. Pilates and yoga are emerging as new ways to be active and can be tailored for people living with MS. Or a variety of other activities can be adapted to provide beneficial aerobic and strength training. Just do as much as you can, as often as you can. For guidelines on physical activity and living with MS visit mssociety.ca.
2) Feed Your Health – While there is a vast amount of research about diet and wellness, the general rule of thumb is to eat healthy. For some that means cutting out dairy, gluten and sugar, for others it can simply mean increasing your whole foods intake. Find the personal balance that feeds your body and soul.
3) Look Beyond the Traditional – While having a traditional healthcare team is a must for most MS protocols, you don’t have to stop there. Many people living with MS take a holistic approach to healing and incorporate nutritionists, naturopaths, massage therapists, or acupuncturists. Just ensure everyone involved in your healthcare is aware of all treatments.
4) Share – Most people living with MS find it helpful to talk about their experiences. While support groups are very popular, they are not for everyone. Some people living with MS choose other avenues like writing a blog; keeping a diary; confiding in a close friend; or attending therapy sessions.
5) Cut Yourself Some Slack – You are going to have bad days. Allow yourself to be down for a day, and then work to make tomorrow better. Just always know that you are not alone on this journey, and that help can be around the corner or a phone call away.
Three women with MS share their personalized approaches to the disease
MS can be erratic, and a “one-size-fits-all” treatment does not exist. To help motivate those living with MS to think more holistically about their treatment journey, we are sharing the stories of three women living with MS. Each of these remarkable women has chosen a treatment path that works for her and is unique too her.
Robyn Baldwin – An alpha-female with five building blocks
Robyn Baldwin is an Alpha-Female. She is bold. She is strong. She describes herself as a “to do list stress slayer and a proactive healthcare advocate.” She’s passionate about fitness, yoga and has competed in obstacle course races. She is a woman of action. So, when she was diagnosed in 2014 with MS, she immediately started researching the Autoimmune Spectrum to find out about the disease, what may have led her to be on the spectrum to develop MS, and how she could learn to live – and thrive – with MS as a “sidekick” in her life. Now, her world is a constant work in progress and she relentlessly explores new coping mechanisms to help deal with her disease.
After researching the effectiveness and side effects of drug therapies available to her, Robyn knew that she did not want to include pharmaceuticals as part of her treatment, so she began to optimize her life. She read a ton. She consulted experts and turned to holistic therapies. Now, happy (and a bit nervous) to say she’s in remission, she is sharing her own regime, on her blog RobynBaldwin.com, to help inspire others. Robyn’s treatment revolves around her Five Building Blocks for Healthy Living:
Nutrition and Supplements: She eats an Auto-Immune Paleo meal plan and is working with a Naturopath to optimize her vitamin/mineral supplementation.
Exercise and Rest: Getting in consistent weekly workouts but taking rest days when she needs to.
Sleep: Ensuring she is getting quality and quantity of sleep – she endeavours for eight hours a night.
Emotions and Stress: She’s learning to process her emotions and stress through therapy and meditation.
Removing Toxins: She’s overhauled her home
cleaning and beauty care products to remove potentially harmful
chemicals from her routine.
“Being thrust into the world of MS is a very confusing place for most people,” adds Robyn. “Because there is no cause and no cure, you can learn from others living with MS on what they do for themselves, and then you have to find what works best for you. I believe my approach and commitment to alternative medicine is the only reason I’m in remission, and I share my story on my blog to provide inspiration and information to others.”
When asked her advice to people living with MS, Robyn replies: “Tackle one area of your life at a time. Don’t try to change everything all at once or it could be too overwhelming. I started with how I nourish myself. Because I already ate fairly well, I figured that would be easy and would give me the inspiration and energy to move on to the next element.”
Janet MacNeil – A new lease on life
Janet MacNeil was a busy mom of four kids who worked full time and went to night school when she experienced her first MS symptom. Within two weeks, she was paralyzed on one side and within two years she was completely paralyzed, unable to feed herself, read or hold conversations. Janet worked with her health care team on an aggressive drug therapy program and slowly, Janet’s motor skills began to return. Today, she manages her MS through a healthy diet, daily yoga, meditation, and weekly horseback riding lessons at CARD (The Community Association for Riders with Disabilities). She has found the treatment that works for her. She now walks without a cane and only uses her electric wheelchair when she takes her dog for long walks.
Janet appreciates the support she receives from others, including the MS Society of Canada. At first, Janet was very against support groups. She did not want to “see her future”. But one night, her husband in frustration brought her to a support group and left her there. Janet was surprised to discover how much she enjoyed it. She went on to lead that support group and start up two other ones. She found it gave her a purpose, kept her learning, and made her feel like she was giving back.
Janet believes that one of the worse things for you is anger, and she does not permit negativity in her home, which she calls her “Little Book of Calm”. When asked about her advice for others living with MS, Janet responds, “I don’t give advice. My experience is different than what others are experiencing, but in our groups, we do share ‘I statements’ to discuss what has worked for each of us.” Here are Janet’s “I Statements”:
Janet’s next project is to start a laughing group. “Everyone has to come with a funny story and we’ll just laugh.” Sounds like a great idea.
Patty Barnes – PATH Maker
On New Year’s Day 2000, while everyone else in the world was worrying about Y2K, Patty Barnes woke up with double vision. That was the beginning of her MS journey. Patty was no stranger to MS – her dad had been diagnosed in his late 40s and his disease had progressed very quickly. After receiving a negative prognosis from her first doctor, Patty and her husband sat down to personalize her treatment. She decided to forego drug therapy. They knew they wanted to start a family, so Patty was determined to manage her MS without medication. And she did. Over the next six years, she had two children, and when her family was complete, she then relooked at her own treatment plan. Her new doctor recommended injections to slow down the progression of the disease. She tried, but it wasn’t for her. Then she experimented with oral medications until she found the one that fit with her life. Happily, Patty has been in remission for three years.
Patty is an outgoing, positive leader within the MS community. She gets involved. She is making a difference. When asked her advice, she points to the analogy that she uses in her support group, “MS is a path. Sometimes there are bumps, sometimes it’s hilly and sometimes it goes downhill, but it’s part of the journey.”
Patty has developed her own “PATH” to wellness:
P is for Passion: Continue with your passion, whatever that may be. (For Patty, it’s her kids and her devotion to her family.)
A is for Attitude: Your attitude determines so much of your outlook and your success. If you need to take a bad day, take it, but then coach yourself out of it, or find a support group that can help.
T is for Try: Try different things and determine what’s best for you. There is so much uncertainty around this disease, when you hear a success story, investigate and try the new technique if you think it’s right for you. If it works, great. If it doesn’t, try something else.
H is for Help: Ask for help from family, friends, and the MS Society. You are not alone. And if you can, offer help to others as often as you can.
“I’m very fortunate,” concludes Patty. “I still work full-time, I have a family I adore, and I’m still able to go about my daily life. I have found my own way to personalize my treatment and it’s working for me.”