Supervised vs Tele-rehab Exercise Program for People with MS (STEP for MS) is recruiting participants to study in person rehabilitation vs tele-rehabilitation exercise programs. The potential results could be a game changer for people with MS to exercise safely and effectively at home rather than struggle with travel to a center, visit costs and the other obstacles to in person therapy.
Participants must live close to one of the study sites and fall within a specific EDSS range.
Demonstrating the value of in person exercise vs tele-rehab can impact access to care, including proof to payers of the value.
Click HERE to read a story that MS News Today published in January for STEP For MS that shares more information.
If you are between the ages of 18 and 65 years and you have Multiple Sclerosis you may qualify if you:
❖ Can walk but you have some difficulty, with or without a device
❖ Do not exercise regularly
❖ Have not had a relapse in the past month
❖ Can commit to train 2 times a week for 16 weeks
❖ Can drive to study site for assessments and potentially for exercise training
❖ Have reliable internet access
Seven study locations
Participants must be able to travel to site twice/week for 16 weeks:
➢ Shepherd Center, Atlanta, Georgia
➢ University of Georgia, Athens, Georgia
➢ University of North Carolina, Chapel Hill
➢ University of Alabama, Birmingham
➢ Cleveland Clinic, Cleveland, Ohio
➢ Marquette University, Milwaukee, Wisconson
➢ University of Colorado, Denver
Interview with Dr. Backus
“We are looking for 500 participants across all seven sites,” explained Deborah Backus, a well-known and highly respected researcher in the field of MS therapy, and is one of the STEP For MS principal investigators, along with Dr. Motl.
“They need to live within area of site in order to do assessment.”
The goal of the study is to disseminate info and share with those who are not close to MS centers.
“If we can show tele-rehab is just as effective as in a facility, then we have what we need to support those with MS, insurers, HCP, and break down barriers to accessibility,” Backus said.
Participants need to be able to walk but have problems walking. They should be slow on timed 25 foot walk test and currently not be exercising. Can be walking with a cane, walker, and limited but must go 25 feet. In terms of EDSS they are looking for scores between 4.5 - 6.5.
The process includes a phone interview, detailed questions and an initial screening process
The programme is two times per week for 16 weeks, with easy sessions taking 1-2 hours,
Participants will receive material on how to do the exercise and coaching sessions to start out then these sessions will dwindle down to create a self-sustainable program.
The trial will take a couple years to finish but Backus shared a recent success stories: “I fell and actually could get up,” said one participant. “I’m stronger and have created an exercise room to keep it up!” Interestingly, this participant was hesitant and didn’t want to continue the program. She is now!
Exercise intervention has been evaluated before - guidelines developed for people with MS. Dr. Robert Motl took these guidelines (GEMS) and combined them with behavioral coaching to create this program. Smaller trials saw its effectiveness and now researchers are doing a larger trial.
“All we want to do is help people,” stated Backus.
“If we can change EDSS and give them options to be healthier, this is going to make an IMPACT!”
“Patients will get stronger while building self-efficacy and confidence,” said Backus, “They will learn to overcome barriers of those with MS.”
For More Details and Contact info: https://www.iconquerms.org/swms-inclusion-requirements
Traveling with MS can be a nightmare, even with the best intentions.
It’s best to have a well thought out plan “A”, knowing the whole time that most likely plan B, C or D might come into play.
We started off the trip with some MS advocacy work... my favorite! Celgene is introducing their new #MSmindshift initiative and I love it. Spot on. It’s all about brain-first thinking. MS affects the whole body but the damage is done in the brain and spinal cord. For now, I’m focusing on the brain.
The plan was to spend the day in a hot air balloon. But, just as with MS, life is unpredictable. Especially the wind. So, Plan B it is.
And let’s just say that Plan B can often be total baller. Best not to have expectations for any of the plans because something really cool may just show up.
Today it was a private yacht trip to the Statue of Liberty. No one else on the water and the weather, while breezy, was gorgeous.
The next day was packed with a satellite media tour in the morning and then...ahhh...back to bed!
First morning was a 3AM wake up call. The next was 5AM and the next 4AM. After traveling cross country. Thankfully, we were on Alaska Air, which knows how to take care of their customers, especially those with MS.
The media tour was fun. I absolutely loved it - sharing my story to help others. I could do this all day long... well, maybe at least for a few hours. Here is my very first ever live TV interview chatting up about MS Mindshift, “brain-first” thinking and what its like to live with MS.
I love what I do, and can do it because of my friends, support and especially because of Tim. He is attentive, caring and takes care of me better than I do. We all have our strengths. My forte is not taking care of myself. I have had to learn, train, practic and form healthy habits in many ways. Like, slowing down and taking breaks. Tim can see when my MS is acting up and will interfere so I don’t over do. He attentiveness is helping me stay focused on whats best for my MS.
Couldn’t do this without you, honey!
The tour of 9/11 brought about emotions not felt in over a decade. My MS was really bad when 9/11 occurred and the images from the original film footage came up like a splinter and stung hard. Vulnerable, raw, emotional, I was a mess. Snapping at Tim for no reason, except for feeling like a veal chop pounded wafer thin, ready for the broiler.
Then we toured the Empire State Building with Rubio, An informative, enthusiastic and passionate guide. AWESOME tour!
1. Plan your trip. We studied the map and made general ideas of what we wanted to see. As the trip got closer certain reservations for tightened up. But within each day were hour long blocks of nothingness. Spots for rest, rejuvenation and restoration.
2. Prepare: I spent a week in Lake Arrowhead prior to NYC. This meant quiet time, me time and time to get my work done. No one else’s agenda mattered except mine. This is not easy to do but it worked out well for this trip.
I have a tendency to lose weight while traveling. This was never the case prior to MS. But now I need to calorie load beforehand. Especially for a trip like NYC which had long days and plenty of walking.
3. Wardrobe: Check out the weather and layout your wardrobe. With MS, especially in the warmer months, it’s important to dress in easy layers that can be shed as necessary. Even more important if you are a middle-aged woman. Organize outfits for each day and make notes of them. This can be so helpful when the MS blahs rear their ugly head during a trip.
4. Nutrition: Anti-inflammatory foods help me the most while traveling. Green tea, lots of water, lean proteins, cheese becasue I’m a cheesehead. And watch the dangers: too much salt, processed foods, quick fixes like caffeine and alcohol.
5. Most importantly - have fun and smile!
Even if youre tired as heck, try to find that smile deep within and share it with others. It’s contagious and viral in all the good ways.
We had the opportunity to see. Oklahoma! On Broadway thanks to Jamie DuMont and Rick Miramontez. What a show. I am still smiling and dancing inside. Just what we needed to wrap up an amazing week in New York City.
I worked with Celgene Corporation to create this post
OK guys - I’m heading to NY next week to ride in a hot air balloon in the New York City area. And I’m a little freaked out.
In my life prior to Multiple Sclerosis (MS), heights didn’t bother me at all, nor did traveling or walking all over a city like NY. But life with MS is a different story.
A former rock climber, adventure racer, I am now petrified of heights. Or at least scared. I feel as if I’m going to spontaneously combust and end up over the edge. I don't trust my body any more after the MS. It has failed me too many times.
But this isn’t the time to fail. This is time to thrive!
Tim and Caroline fly fishing the Los Angeles River
Time for an MS Mind Shift
A cross country flight, days of fun and sightseeing, and of course the balloon. Time to get my brain in gear!
So, with your help, I’m going up in a hot air balloon on May 21 in New Jersey near Liberty State Park courtesy of Celgene and their continued support of those with MS.
And, I need your help!
Did you know that by taking care of our brain we can help our MS?
I’ve lived with MS since 2001 and never really understood the difference between white and gray matter, and what lesions really mean to me. Until now!
I have never seen such an explanation of the importance of brain health and MS.
For example, “The brain is made up of two types of tissue: grey matter, which is where communication signals start, and white matter—which carries messages from one area to another. MS lesions occur in both of these areas and can lead to the symptoms you experience.”
Well heck, that is a concept that can be understood.
When your brain is healthy, the sky can be the limit
1. What lifestyle choices can I make to help preserve my brain and its function?
2. What can I do about other chronic conditions that may be influencing my MS?
3. What changes to my lifestyle can I make to help maintain my neurological reserve?
They even have this handy list you can have emailed to you today or closer to the time of your next doctor’s appointment. How cool is this?
Dang...might need to steal this idea. I’ve already downloaded and am using it to get ready for NYC!
So far my list of action items include:
• Meditation & quiet time
• Diet and Nutrition
• Vitamin adherence
• Keeping up on tasks - making lists as needed.
I am also reviewing my lifestyle.
1). What bad habits have slipped in and need to be removed or tamed? Some of these might include alcohol, tobacco, salt, processed foods, items that bring temporary joy but not many health benefits.
2) What good habits have slipped away and need to be added and strengthened? These help us to be strong, and once reintroduced can be easy to keep up: walking, juicing, cleaner eating, more water, green tea, vitamin adherence.
Does anyone else experience more fear since their MS? And if so, what do you do to combat this fear?
Thank you so much! Together, we’ve got this.
Send me your thoughts, ideas, encouragement. I need them!
(Credit to MSFoundation who did the original print copy in their magazine MSFocus, winter 2019 issue)
Learning Leads to Advocacy
By Laura Kolaczkowski
Hearing the words ‘you have multiple sclerosis’ makes us want to learn all we can, as fast as we can. When I encounter newly diagnosed people, the primary advice I like to share is to think of all the information about MS as a giant smorgasbord of food for thought. Just like those buffets we go to for real food, the selection of information can be tempting yet overwhelming. We want to consume it all, but it’s impossible to digest everything at once. Instead, we need to take small bits of information and process them before we return for more to build our knowledge of MS.
MS is a chronic, lifelong condition and the information we need to live better lives with this disease is going to be there as well. My advice is to take it slow and put on your plate only as much as you can digest before taking more. Bite-sized morsels of information won’t overwhelm you and can be quite satisfying.
Trying to understand test results, MRI reports, and all the other medical information we get from our clinicians can drive us crazy. If you have questions, ask your neurologist or MS nurse to explain those results. They went to school for decades studying MS, while most of us who have the disease didn’t do the same. I still struggle to understand the difference between B cells and T cells. Trust the experts to help us make sense of these results: that is part of their job. We also have to trust our own senses. If you feel like something is wrong, even when your test results show no change, speak up to your medical team. Don’t sit by wondering and worrying when you can be asking the experts.
This is your life and now MS is also part of it, but MS isn’t all you are. Be sure to keep balance in your life and spend time with family and friends, read a good book, indulge in a special food (my favorite is ice cream) or special drink occasionally. Treat yourself kindly – having MS isn’t something you did wrong and you aren’t responsible for being ill. Don’t beat yourself up – instead keep living your best life.
There is nothing more isolating than being alone with your own thoughts and a chronic disease like MS. As a person with MS, you have power. That power includes sharing your experiences with others in social media forums, running support groups in your own community for MS Focus, or joining patient-directed research groups such as iConquerMS. Find what ways you are comfortable in exerting your own power over MS and do it. Nothing feels better than connecting and letting MS know you are making a difference for yourself and others.
It’s important for everyone to know there are so many people on our side in this fight with MS. We begin with the million people with MS in the U.S. and even more worldwide, and then their support partners and families. Add to them clinicians (doctors, nurses, med assistants, etc.) and researchers and we have a mighty team. But we also need to remember the amazing work done by advocacy groups – such as MS Focus: The Multiple Sclerosis Foundation – and the resources they put into this fight. We may be the ones going toe-to-toe with MS, but when the going gets tough, we should not forget all these others who have our back.
Yes, I get angry when I read the profit reports from the MS pharmaceutical companies, and knowing what my insurance is charged for my disease-modifying therapies. But that anger is tempered more these days as I better understand the drug development and approval process; how many drugs never make it to the pharmacy yet are studied in trials for years; and what investments pharmaceutical companies put into treating MS, while financially supporting work to find a cure. The more advocacy work I do that involves the business side of MS, the greater appreciation I have for the need to educate everyone about the role of pharmaceutical companies as our allies and not view them exclusively as the enemy.
Never doubt we can all be advocates, we just do this work in different ways and some of us just get more public recognition than others. Advocacy and MS has many ways to play out. Each time we talk about MS to others, we are spreading awareness. Each time we connect with others living with MS, we are offering support. With every email, phone call, or tweet we direct to our elected officials about the need for healthcare for people with MS we are speaking up. All of these are critical advocacy roles and I am proud of all the advocates in my MS community.
Thank you Laura for this awesome post about making a difference and choosing to advocate for ourselves and others. With everyone’s support, the sky is the limit!
Seems to be a trend for me lately. Sleep will happen, eventually, but at what cost to my health? I’m ready for a change.
During one of my conversations with Stephen Camp, the founder of Avior Nutritionals, maker of Myetin, he brought up the concept of brain restoration.
Brain restoration? We can restore our brains? I love this concept!
I definitely wanted to learn more.
So, he set up a meeting with a functional medicine specialist, Dana Leduff, CHC and practice manage for Dr. Knight at Knight Integrative Medicine.
Have you ever heard of NAD+? I have heard mentions of it but really do not understand it fully. I was psyched to learn how brains restore and what this means for us living with MS.
NAD+ levels decline as we age, or so the research indicates. AND it is critical for cell generation and health.
“NAD+ creates calming neurotransmitters in your brain,” Leduff told me. OK, my MS brain definitely needs calming.
I took this straight from the Wikipedia - “Nicotinamide adenine dinucleotide (NAD) is a cofactor found in all living cells. The compound is called a dinucleotide because it consists of two nucleotides joined through their phosphate groups. One nucleotide contains an adenine nucleobase and the other nicotinamide. Nicotinamide adenine dinucleotide exists in two forms: an oxidized and reduced form, abbreviated as NAD+ and NADH respectively.”
We are talking about the oxidized version, NAD+,in this article. But what does this mean for me?
“NAD+ is a cofactor involved in the Kreb cycle. It stimulates ATP which is the fuel equivalent that runs all of our cells,” Leduff explained, “NAD+ is a kick start for the engine.”
The Kreb Cycle is also known as the TCA cycle (tricarboxylic acid cycle). It’s basically the chemical reactions to release stored energy through oxidation of acetyl-CoA derived from carbohydrates, proteins and fats into adenosine triphosphate (ATP) and carbon dioxide. It provides the process to make the fuel we need to run our engines. NAD+ is this fuel.
“It affects a lot of other metabolic pathways. If depleted or burned through, adding NAD+ could help gain greater resilience,” she said, “We could have more stockpiled.”
“Imagine having a bad starter to your car,” she said. Well, that’s easy to do! “If you could take a product that could provide NAD+ it could help the Kreb cycle.” Which in turns help the brain restore by helping mitochondria reach a healthier state.
“An out-of-balance level of NAD+ may be a result from genes that don't make enough or don’t break down the macronutrients to pure NAD+,” Leduff informed me. “When they become in balance it could create changes in circadian rhythm and sleeping patterns.”
Leduff further explained, “As in gardening, we need soil enriched with the right things. In the human body, NAD+ provides the right fuel. It turns a bunch of switches on that might have not been activated due to limited fuel.”
“We want to send as many healthy microbiomes to the brain,” informed Leduff as these could help restore the brain
Research claims benefits. One interesting article I found was put out by the Translational Medicine of Aging. The title hit a chord with me, “Therapeutic potential of boosting NAD+ in aging and age-related diseases discusses NAD+, it’s benefits and clinical usage.”
NAD+ is synthesized by natural NAD and several precursors. Precursors have shown possible benefits in research. But, “NAD+ in Myetin is the activated form of NAD+ which the body can use in its current form and is not affected by any genetic polymorphisms,” stated Leduff.
One precursor, NR, was found to be beneficial for glucose levels in diabetics. In neurological diseases such as Parkinson’s it’s been shown to help memory, motor function and mitochondrial function as well as protect from neuronal cell death.
Another precursor, NAM, helps with oxidative stress and more: In the model of obesity, it has able to restore glucagon storage to similar levels as age-matched standard-diet mice as well as ameliorate diet-induced hepatosteatosis, oxidative stress and inflammation.
The study found that inhibiting the age-related decline in NAD+ levels is critical for preventing age- or disease-related frailties. It also found that strategies that could potentially boost NAD+ levels include exercise, fasting, and maintaining a healthy diet, and by boosting with supplements.
But these precursors are not the same as NAD+,” Leduff explained. “And there are many precursors available for sale.”
“Whenever claiming to be a particular molecule. We want a form that’s most bioavailable otherwise those genetic mutations could make the process more sluggish or not happen at all so the body can’t benefit from it.
Leduff warns, “Many companies claim to have NAD but they are talking about “precursors” of some form. Avior Nutritionals has the only blend available that is the pure active form of NAD+.”
Leduff suggested that patients who want to find more personalized health plan, could find their answers in functional medicine.
Sleeping with Sabrina After talking mitochondria a bit, I still wanted to learn more. So, I connected with sleep specialist and certified brain fitness coach, Sabrina.
She does not have MS.
“I was sick and we couldn’t figure it out for a long time, so I decided to heal myself with self care, nutrition, sleep, etc.,” Sabrina said. A familiar story to so many of us.
“I wanted to share my story and inspire others - switched to coaching. We need to educate people today that there are other options.”
What is a brain fitness coach?
“We help others take care of their brain before its too late. We help with nutrition, exercise, sleep, and self-care. Are they too stressed or do they need to enhance their brain function?” Explained Sabrina.
“The body and brain are so tightly connected,” she said, “ For example, if people move the body releases hormones and detoxifies the body - it’s a chain reaction. They don't realize how the body works and just follows the medicine prescribed.”
Mitochondria “I can’t say enough about mitochondria!” Shared Sabrina.
“These energy powerhouses are some of my best friends when I work with my clients. Considering that mitochondria can also help us with cell growth and the support of the nervous system, I can’t ignore their importance in my coaching practice.
“None of my clients knows about mitochondria, but when I explain the critical role of mitochondria as the source of our cellular energy, their view of everyday life and optimal lifestyle completely shifts. They feel more motivated to follow my program that focuses on nutrition, sleep, exercise, and stress management to improve their energy levels and overall health.
“Since mitochondria are directly connected to sleep and most specifically to our circadian rhythm, I always stress the importance of a good night’s sleep. If our circadian clock is impaired due to lack of sleep, or inconsistent sleep patterns, our energy production will decrease, and our overall health can be impacted: symptoms can include fatigue, pain, and susceptibility to illnesses. This, in turn, can negatively affect the circadian rhythm, creating a vicious cycle.
Circadian Rhythm “I’m also learning a lot about NAD+ and how mitochondrial dysfunction can result from declining NAD+ levels in our body. I have to say, I feel blessed to live in this era where science and genetics are making progress every day, and more and more research studies give hope to many people suffering from chronic and autoimmune diseases.
Sabrina suggests that once we understand our biological clock, it’s better to understand what we’re doing and going through.
Hormones with light and darkness really run the show. Melatonin night time. Cortisol and adrenal during the day.
“Understand and take better care of yourself,” Dana recommends, “Be more respectful for sleep routine when the night comes.”
Sabrina’s Sleep Tips “Unplug,” recommends Dana, “the use of technology is a big disrupter.”
Then, Sabrina gave me these great tips to help reset the circadian rhythm along with NAD+.
1. Reduce blue light/devices 2. Software called flux (f.lux) changes color of screen based on time zone to adjust/tint with red as the day progresses 3. Windows 10 on a PC? Look for screen tint, regulated with red/blue light. 4. Rescue TV, devices, etc. 5. Put phone in airplane mode - reduced EMF magnetic field 6. Swannies - Blue light blocker glasses 7. Keep room where you sleep as dark as possible. 8. Consistency is KEY - 1. Regular time to bed, regular sleep patterns 2. Do not catch up on sleep - if its gone, its gone. 9. Exercise can help sleep patterns. Don’t exercise later in Eventing as its stimulating and may have problems falling asleep. 10. Caffeine - stop by 3pm - leave 6-8 hours before bedtime. 11. Napping - less then 30 minutes, or might enter deep sleep and feel more fatigued upon awaking 12. Relaxation techniques: yoga, breathing,
I’m definitely beginning to understand better.
NAD+ is critical for our cells and fueling our brain and body. It helps keep all those scientific parts in balance and the mitochondria healthy so it can send harmonious energy to the brain. “Calming neurotransmitters,” Dana called them.
And understanding how the circadian rhythm plays a role sort of ties the whole brain/body connection together in one tight package.
Very curious for sure. This NAD+ and its role in helping me sleep. Self-care at it’s finest. Just one more way we can say #takeTHATms!
As many of you know, I am a big advocate of gut health for MS. I've worked with Dr. Terry Wahls on several projects and am grateful to have her expert advise on the connection between gut microbiota, the brain and MS health. I take a probiotic every morning and have tested my hut health. Thank you Dr. Wahls for providing this insight! Your Bowels and Multiple Sclerosis
The microbiome impact on multiple sclerosis risk is a hot area of research these days. The microbes living in and on our body have a major impact on our weight, mood, immunity, and even heart health! If you want health – you need to cultivate a healthier microbiome. The mix of species living in your bowels depends on many factors.
Did you know your poop could be so valuable for keeping you healthy?
When we are born, we acquire bacteria from our mother as we pass through the birth canal. If we are born via C- section, we acquire bacteria from the hospital workers who help deliver us, and which bacteria we acquire can greatly influence our health. Children born via C-section are at a higher risk of developing obesity, mental health problems, asthma, allergies, and auto-immune problems.
There is growing evidence that the microbiome has a role to play in patients with multiple sclerosis. Those with MS have a different mix of species than those without MS. Also, scientists can, by examining the mix of microbial species living in the stool, predict who is experiencing a flare of MS symptoms.
Severe constipation is a hallmark of having a problem with the microbiome, and constipation is a common problem for those with MS. One of the best strategies to address constipation is to increase the fiber in the diet. This can be done by adding more non-starchy vegetables, fermented foods, salads, and raw vegetables and fruits. We instruct our patients in our clinics and our clinical trials to monitor their bowel movement consistency and adjust their diet.
Here are a few simple strategies that we teach our patients to begin shifting the mix of species living in their bowels.
1. Eat 6 to 9 cups of non-starchy vegetables and berries each day
2. Eat fermented foods with every meal
3. Ditch the sugar and replace dessert with fruit to top your meals
4. Eliminate artificial sweeteners
5. Add more fiber (such as a chia puddings, flax seed puddings) to have soft bowel movements each day.
Cultivating a healthier microbiome begins with eating more home-cooked meals.
In my clinics at the Veteran Affairs hospital, many of our patients were on disability with limited financial means, plus they have either forgotten or never learned how to cook. We spend time giving our patients cooking classes and teaching people how to save money by making meals that are both delicious and affordable.
I do clinical research and study the impact of diet and lifestyle on multiple sclerosis related symptoms. In our current clinical trial, we are comparing the low saturated fat diet to the low lectin version of the modified paleo diet (Wahls Elimination). In this trial, we are collecting detailed information about what people are eating as well as stool samples so we will also be able to asses how the microbiome changes as they adopt the study's diets.
I have also written a book, The Wahls Protocol, which gives people the tools to reclaim their lives from the ravages of autoimmune problems like rheumatoid arthritis, psoriasis, multiple sclerosis and asthma. In addition, I have written a cookbook, The Wahls Protocol Cooking for Life,to make it easier to learn how to cook at home. It is filled with strategies to make affordable meals, simply and quickly to get your life back on track.
Take action for a healthier gut.
If you want to learn more about the diet and lifestyle approaches I use to treat autoimmune, neurological, psychiatric, and other health conditions and the clinical trials that we conduct, visit www.terrywahls.com. If you want to dive deeply into the protocol that I use, consider attending The Wahls Protocol Seminar that I teach every July. In the seminar, we teach people the skills they need to be more successful at adopting and sustaining the diet and lifestyle changes that restore health and vitality.
Thank you, Dr. Wahls, for sharing this important information with us. We appreciate all you do to help us say #takeTHATms!.
This blog post is sponsored by Med-IQ- working together to improve the lives of those living with MS
Treating multiple sclerosis (MS) takes more than a drug. It’s a lifestyle change combined with teamwork. These changes have made a huge difference in my life and I feel this information can help you live better. By combining self-care with guidance from medical professionals, patients are finding better ways to manage their MS.
Health care professionals provide medical advice and recommendations. Self-care empowers patients by helping them take charge of their lifestyle.
Having access to current research, scientific findings, and professional expertise can make a difference in how health care professionals treat their patients.
This is one reason why I chose to work with Med-IQ, an accredited medical education company that provides an exceptional educational experience for physicians, nurses, pharmacists, other health care professionals.
The second reason is because Med-IQis helping share my stories with those that can help others - the health care professionals who treat patients on a regular basis.
The more our medical team understands and knows what we are living with, the better they can serve and help those with MS live a better life.
They know the medical tools. We know our symptoms. Together we can make a difference!
Symptoms Versus Disease
There is strong evidence that treating MS as early as possible has its benefits.
Whether you are newly diagnosed or living with MS for years, the question about which treatment is best never ends.
MS is a complicated illness. There is the demyelination of the nerves and the symptoms that result from this nerve damage. There is no cure.
But MS is more than the disease. The resulting symptoms can cause havoc on someone’s quality of life.
Because of the loss of myelin, nerves short circuit and do not communicate as they should, resulting in a broad range of symptoms such as extreme fatigue, pain, spasms, numbness, tingling, cognitive issues, bladder problems, vision problems, and more.
Doctors may prescribe a variety of drugs to prevent future occurrence of the symptoms and help you live better. But, many of these drugs have side effects or are not tolerated by some patients.
Today there are 15 disease-modifying therapies (DMTs)for MS patients, varying from less aggressive forms to bulldogs that have hefty side effects. They are FDA-approved, clinically tested treatments to help slow down the progression of the disease and its associated disabilities. But which one is right for you?
DMTs are designed to reduce inflammation by using a variety of factors that affect the immune system. The hope is for fewer relapses, less severe relapses, slower progression, and reduced disabilities. DMTs are notdesigned for symptom management.
DMTs are divided into categories based upon route of administration: injectables, oral drugs, those taken intravenously with an IV. The drugs range from less aggressive drugs with fewer side effects to aggressive medicine with more risks.
There are currently 15 DMTs approved for the treatment of MS. You can find a list of these medications on the National MS Society’s website, as well as risk and safety information for each (DMTs).
DMT Risks and Side Effects
It is known that treating MS early and aggressively has its benefits. But how aggressively should it be treated?
With the increased amount of aggressive MS treatments come greater risks and side effects. Liver damage, hair loss, and even death may occur.
In order to best minimize risk while attacking MS, it’s necessary to be in open communication with your doctor and nurses about the medicine, your lifestyle, your habits, and the risks you are willing to take. There are options.
Three Habits of a Proactive MS Patient
These three habits can support you in managing your MS.
1. Create open communication with yourself, your family/friends, and your doctor and care team.
2. Attend doctor appointments and use MRIs & other measurement tools to track disease activity.
3. Practice self-care: Love yourself with healthy actions.
It’s crucial that you are able to talk comfortably with your health care providers to find the best combination of medicine and to help minimize risks.
Do you drink? Smoke? Take your medicine on a regular basis?
Scary as it may seem, being honest with your doctor and care team will provide the best outcomes. This will only come if you are honest with yourself.
While advances in research are getting closer to finding targeted drugs for individuals, at this time it becomes a trial and error game. And this can be difficult.
Be patient and kind to yourself during this time. Be open with yourself and your doctors. Ask questions, be smart. Together you will find the right solution!
Every person is different and reacts differently to medicine, but there are actions one can take to minimize MS symptoms naturally.
This is time to bring in self-care. While the DMT is fighting your disease, bring in your own actions to fight thebattle.
Take control of what you can: eat healthy, stop smoking, exercise, and practice life skills to manage stress.
MS patients have a harder time with their disease when other comorbidities occur, such as diabetes, obesity, and high blood pressure. The better we can manage our own health, the better chance we have for controlling MS.
Finding Quality of Life
MS is a manageable disease. Through teamwork, honesty, and action, patients’ lives are fulfilled. Quality of life is increased.
Consult with your doctor. Talk with family and friends. And check out reliable sources of information like those listed below.
And above all, know that you have this - that you are going to take action and do the best you can.
Help us learn more about your experience with MS and working with your care team experience by taking this survey. The survey, which includes more education on this topic, will take less than 15 minutes to complete. Survey responses are anonymous and will be shared only in aggregate. Your responses to these survey questions will provide Med-IQ with important information about your experiences with MS treatment and your care team, which will help us develop future educational initiatives for doctors to improve MS care.
The survey, which includes further education on the topic, will take less than 15 minutes and upon completion, and you will be entered into a drawing to win 1 of 3 $100 VISA gift cards, with a total prize value of $300.
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Meet Aby and Get Tips About Living With MS and Overall Well-Being.
by Caroline Craven
When chronic illness hits, it is not only the body that is hurts. Everything can be affected, leaving one to feel out of balance in life.
If you are not nourishing your whole self – including the body, mind and soul, it’s likely that your wellness may suffer.
It can certainly be difficult to find balance while working, taking care of others and being present for friends and family.
Divide and Conquer
Let’s look at how we can dissect these elements into more digestible pieces by using Aby – a new app created by Biogen for everyone living with multiple sclerosis (MS) and the people who support them.
This app is a really useful tool for anyone impacted by MS – from newly diagnosed patients to those who have had MS for many years, as well as their caregivers and health care providers.
Before getting started, consider your current state of affairs.
Visualize how sensitive you are in your condition. Are you feeling in balance with everything going on in your life?
While we may feel as strong as an oak tree on some days, more often we may be delicate dandelions figuring out how to not blow away in the wind.
Then look closely at your body, mind and soul. How are you feeling physically? What are your emotions like today? How do they differ from the week or month prior?
Now take it one step further, and think about your vulnerability at this moment. Does one little thing happen and you are wiped out for the day? If so, then it’s time to slow down, breathe deep and nourish yourself.
To help capture these sentiments, after creating an account on Aby, you can use the journal feature to record your sleep patterns, activity levels and emotions from day to day. I love that it’s all in one!
I take advantage of the Aby notes section in the journal, to keep track of the myriad of feelings that I feel throughout the day. Later, when my sleep, activities and emotions have been recorded, I can look back and see trends, using this information to manage how I use my energy and better understand my body.
6 Tips to Find Balance in Life
With this information, you can identify ways to find balance in life while nourishing yourself.
To find balance, here are some techniques I would recommend:
1. Seek quiet: Whether it’s a “do not disturb sign” on your door or a walk to a peaceful spot outside, find a place where you feel safe and where you can be at peace. This may mean a gentle stroll or roll without people around, or possibly a few minutes in a quiet room, or under a tree in a garden. Just sit, be quiet and become increasingly aware of your body and surroundings.
2. Break up the routine: Do not sit in one place too long, especially at a desk in an office or while working. Stand up, stretch and walk around. When life becomes stagnant, it can become a vessel for ill will and bad energy. Think of pond scum. But, if you take charge and make changes, you can encourage your life to flow with clarity and beauty.
Tip: EXPLORE the exercise program in Aby. “Warm-up” is only 48 seconds long. Short enough for everyone to fit into their schedules.
3. Listen to music: Music may soothe the beast within, so give it a try! Many folks find it may help with focus and motivation. You can use it to get moving in the morning or for an afternoon jolt. Try different genres and see which ones inspire what’s inside of you. Get up and dance if it so moves you!
What’s your favorite dance tune? Right now, I’m stuck on the soundtrack to Peter Rabbit, the film of 2018. So fun!
TIP: In Aby, record your activities in the journal. And then, add your mood, your sleep and your MS symptoms. The first day may not seem that important, but trust me, a week or so into it and this information will be handy to have. It has become a great way for me to spot trends in my MS symptoms.
4. Stay hydrated: Often considered the essence of life, surround yourself with the cooling, cleansing presence of fresh water. Drink it filtered, all day long. While bathing and cleansing, be appreciative of the water flowing freely from the faucet.
Take this time to acknowledge the gratitude to those you love and the life you appreciate. Remind yourself of something beautiful in your life. Carry the sense of water throughout your home and garden by adding water elements to your surroundings, such as a fountain. Download an app that sounds like the ocean or a river and carry the water element with you throughout your day.
5. Elevate your diet: Perceive all healthy food and drink as nourishment for your mind, body and soul. What are you feeding yourself? Is it working? One way to feel better about yourself is to add more plant-based foods to your diet. The variety of colors, vitamins, textures and tastes are endless. Use them raw or find recipes to cook.
Want some inspiration for a meal? Make themes for your dishes. One suggestion is to have a different color in every pot. Another is to have a meal in honor of a great piece of art in your house. Match the colors and play with the plating and table displays. Be creative and enjoy your inner “Martha Stewart.”
Tip: EXPLORE the diet and nutrition feature in Aby to learn about healthy recipe options! Check out “Tips for Healthier Eating.”
6. Smile: Smiling is contagious in a good way, and it’s hard to be in a bad mood when you have a smile on your face! It also physically works the face muscles, and is just a darn good thing to do. Pass it on!
Look at the Bigger Picture
We define ourselves by what we do, so let’s think again about the bigger picture. Why are we on this planet? One might say we are here to do good unto others, to enjoy the beauty surrounding us and to shower the world with love. While people have other ideas about why we exist, this image is perfect enough to place us in a positive mood.
Most importantly, enjoy what you are doing! Life can throw us some real curve balls, but we can duck, swing and catch them when we are at our strongest. I hope that the Aby app may help provide you with additional inspiration.
WOW. I cant believe I am here. And would not be here if it weren’t for all of your well wishes and support.
I walked 4 miles today! Wahooo!!
My work is paying off but still having some issues.
I was having a hard time committing to walking/exercise so my friend joins me - it makes me accountable and I need that!
But because I’m persevering, I am on my way to achieving my goal of improving my MS health by taking self-care steps of wellness.
1. Walking: Heading out for my third walk this week: builds strength and heart health.
2. Stop and smell the roses: builds appreciation and gratitude.
3. Do not procrastinate - even the dullest of chores to be done now. And it’s helping a lot. They need to be done so just do it!
4. Eating healthy. Wish I got a photo of the Sushi Burrito from Bristol Farms. Delicious! And Uber healthy. I split it with my friend.
5. Time with friends. Today with my friend on a walk. Several friends on the phone.
6. Compartmentalize my day for work. I divided up the day and two hours a day, first thing are spent on GWMS. then, writing and other gigs come into the picture. When there is ton to do, it’s important to divide and conquer.
7. Smile. Smile and pass it on. The cheapest form of joy we can spread.
8. Having moments of doubt? Repeat your affirmation. Today, my affirmation is this:
“Because I am walking, working hard and taking care of myself, I am on my way to reaching my goal of improved health and I am feeling strong, capable and empowered.”