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What I did when I was diagnosed with Multiple Sclerosis

The road to a diagnosis of multiple sclerosis may have come in a whirlwind of a day or at the end of long, agonizing years. The destination is all the same – a mysterious, unpredictable and unseen disease.

When I received my diagnosis Thursday, July 7, 2016, I didn’t know a thing about multiple sclerosis.

I knew about diabetes, cancer and heart disease. Why wasn’t I familiar with MS? Isn’t that the “wheelchair disease?”

The questions ransacked my mind.

  • What’s going to happen to my body?
  • What had already happened to my body?
  • What caused it?
  • Did I do something to bring this on?

Like it or not, MS was now part of my world.

I felt like I just booked a plane ticket for an undisclosed destination. No trip planner. No time for online reviews. No travel agent recommendations. Nada. Just signed, sealed and delivered. I knew, however, I needed to hit the road with the best possible plan to restore and maintain my health.

I wanted MS to know that I was in charge.

MS was not going to determine my health or my future.

So, I had the right mindset, but not a clue where to begin.

According to my neurologist, I needed to start on a disease modifying drug. These drugs are designed to reduce the MS attacks and slow down the damage to the central nervous system (the brain and spinal cord – the place of attack for this autoimmune disease).

Personally, I believe there is an incredibly valuable place in this world for medicine and in my opinion, this was one of those places. However, I also knew from my years of studying nutrition and wellness strategies I needed more than what the medicine cabinet could offer to truly conquer this disease. I needed the best of both worlds – the main medication to address the disease and a highly personalized, research-based nutrition plan.

My gut told me two things:

  1. My body had sustained an immense level of chronic stress over the recent years – I changed careers, completed a triathlon, attended culinary school in NYC, helped to care for my mother during cancer treatments and ultimately grieved her passing. These intense years not only drove me into extreme adrenaline fatigue but likely created a firestorm of other stress-induced damage I was just beginning to discover. Based on my research, stress was actually powerful enough to “turn on” an autoimmune disease like MS. I would never know what actually turned MS on in my body, but I knew I needed to arm myself with as much ammo as possible to stabilize this disease.I was onboard with taking the disease modifying drug based on the recommendation of my neurologist. However, all medications have risks and benefits and sometimes the risks don’t outweigh the benefits. For me, the symptom-management medications were not compelling enough for my current state of health. I didn’t have extreme symptoms, and I didn’t want to start popping pills like movie theatre popcorn. Outside of the main medication, I wanted to begin healing my body through diet and lifestyle first. I knew the research and experienced the body’s healing abilities in the past.
  2. I needed to pursue my own healing plan as if it was my only path to restore my health. The reality is my body didn’t get MS because it was deficient in a disease modifying drug. The medicine would help, but it’s not addressing the root cause. There was something on a much deeper level that allowed this gene to turn on. Through reading and research and discovering the profound work of Dr. Terry Wahls, I learned about a new path to stopping the progression of this disease. Dr. Wahls – a medical doctor diagnosed with MS – had the food prescriptive plan to reversing MS through paleo principles and the science to back it up. Step aside Beyonce, you may slay a dance floor like no other, but Dr. Wahls is my new hero. She’s slayin up some serious healing in the kitchen. I knew if I didn’t get to the root cause of what turned the disease on in my body, the medication would only take me so far. For the best chance of truly stopping the progression of this disease, I needed to get to the root of it.

Here’s what I did when I left my neurologist’s office and invite you to do the same.

Eat.

Deep healing starts in the kitchen. Hippocrates said it himself, “Let food be thy medicine and medicine be thy food.” Food – real whole food – has the nutrients our cells need to thrive and heal. I needed to ensure that my body was receiving the proper nutrients to stand up to MS; and equally as important I needed to ensure my body was digesting and absorbing the nutrients I was giving it. The latter half is the most overlooked yet essential part of the equation.

Thanks to the clinical research of Dr. Terry Wahls, the science was already done to show not only the nutrients my body needed to heal from MS but also the prescriptive menu to achieve it. And so it began… eliminating gluten, dairy, soy and eggs, and fueling up on my nine cups of veggies a day. Healing my gut. Healing my cells. Healing my life.

Start Now: How many veggies do you eat in a day? When was the last time you had a veggie? (Unlike our school cafeterias French fries and ketchup don’t count!) Add one at your next meal… even at breakfast. Toss some veggies in an omelet or spinach in your smoothie.

Sleep.

The importance of sleep goes far beyond the beauty benefits. When we sleep our body doesn’t have to move, digest food or think critically. That enables our body to use its energy to remove toxins, manufacture hormones and fight infection. Sleep may seem passive, but it’s prime time hours for the body to detox and repair – essential components to anybody, especially those suffering from an autoimmune disease like MS.

At the time of my diagnosis, I had an incredibly demanding schedule. As a personal trainer, I lead a weight loss class that began at 6 am. And some nights I have been at the gym as late as 10 pm, so sleep was a luxury. However, if I was serious about standing up to MS and doing everything in my power to support the healing process, I needed to prioritize sleep. I couldn’t change the time of my morning alarm but I did become more efficient with getting to bed and getting off the electronics an hour prior to snuggling in.

Start Now: Aim for 7-8 hours of sleep a night in a dark, cool room. If you’re completely off the mark for this now, shoot for 30 minutes earlier than your current bedtime. Once that becomes an easy habit, progress with another 30-minute increment until you reach your goal.

Chillax.

Stress is part of life. Work/life balance is a myth. It’s time to get a grip on what’s stressing you out, set realistic expectations in all areas of your life and prioritize a little chill-axation.

This was by far the greatest challenge for me. Veggies – I got them. Earlier bed time – it’s not easy, but I can deal. Chill on the couch? There might as well have been needles poking out of the couch cushions, it was straight up torture. The idea of doing “nothing,” was actually stressful to me. I wasn’t being productive! There were so many other things to do.

I always circled back to my “why.” Why does this matter? What’s the risk if I don’t change my habits? What’s the payoff if I do? Remembering my why – standing up to MS – got me through the ick of learning to deal with it. My body needed “active rest,” time outside of my sleeping hours to unwind and relax.

Start Now: What’s one expectation you’ve put on yourself or your life that if you let go of, could free you from guilt? Do it! (Cue Free Your Mind for a little En Vogue action!)

This became my starting point of a very long, very rewarding road to healing. Everyone’s path is as unique, but if given the chance, the body will heal itself.

Let’s give your body that chance, shall we?

This post originally appeared on alenebrennan.com. Reprinted with permission.


Alene Brennan has been featured in USA Today, Philadelphia Inquirer, Huffington Post and Mind Body Green. Alene overcame debilitating migraine headaches through diet and lifestyle and is now once again using a “Less Pharm, More Table” approach is managing her diagnosis of Multiple Sclerosis. Alene holds four certifications: Nutrition Coach, Yoga Instructor, Personal Trainer and Natural Food Chef. She also completed specialized training in nutrition for autoimmune disease specifically the Wahls Protocol and the Autoimmune Protocol. Since receiving her MS diagnosis and seeing first-hand the power of using diet and lifestyle to create a healing environment in the body, she dedicated her virtual nutrition coaching practice to helping people with MS and autoimmune diseases take back control of their health. Visit her website, alenebrennan.com.

Exercise: A Must for Both MS Patients to Partake In and Healthcare Providers to Promote

Exercise is an essential component of the Multiple Sclerosis patient’s treatment plan. Unfortunately, until the 1990s, exercise was highly regarded as contraindicated to MS patients. In 1993, the first medicine was approved by the FDA for MS and in 1996; the first research showing the benefits of exercise was published by the University of Utah. These were two major breakthroughs which have given hope to a population consisting of the most common disabling neurological disease of young adults (most common onset between ages 20 and 50).

Multiple Sclerosis is a neuroinflammatory autoimmune disease of the central nervous system (CNS), consisting of the brain, spinal cord and optic nerve.  The immune system attacks the myelin sheath of the nerves which insulates, protects as well as affects the signal speed from the CNS to the affected body part. Presentation of initial symptom of MS include optic nerve inflammation, poor balance (ataxia), dizziness (vertigo), weakness, double vision (diplopia), bladder/bowel dysfunction, pain, sensory loss, cognitive impairment, fatigue (most common) and a host of others including but not limited to gait impairment, depression,  tremors, thermoregulatory dysfunction (autonomic) and spasticity. Because many symptoms are invisible (not outwardly visible), most notably fatigue, pain and cognitive impairment, they can affect confidence, relationships, and discourage patients from seeking treatment or help.

Currently, with more than 16 FDA approved disease modifying treatments, as well as exercise being greatly encouraged by health care providers treating MS, the face of MS is changing for the better. While exercise will not change the course of the disease progression, both aerobic and anaerobic conditioning have greatly helped reduce secondary and tertiary symptoms such as falls, injuries, anxiety/depression, impaired activities of daily living (secondary) and increase self-esteem, and independence while reducing social isolation and family disruption (tertiary).

The benefits of a safe, progressive/adaptive exercise program are improved overall fitness, ability to perform activities of daily living, moods, sense of well-being, strength while decreasing spasticity, fatigue and may prevent a host of co-morbidities. Because MS patients may be less mobile and underweight/overweight, coupled with the possibility of side effects from the use of corticosteroids, it increases the likelihood of developing conditions such as osteoporosis and diabetes mellitus. This is an even a greater reason those affected with MS should work with professionals who understand the disease.

Although many patients are still hesitant to begin an exercise program because of fear of exacerbating their condition, lack of confidence or inability to find professionals skilled to work with them, now is the best time in the history of MS treatment for both patients and professionals to be on the same page. Exercise no longer has to be an activity of an MS patient’s past. It is simply a must of the present and future.


Jeffrey Segal, owner and chief operator of Balanced Personal Training, Inc., since 2004 is a personal trainer, motivational speaker and educator who has been working in the fitness industry for over 20 years. 

At the age of 25, Jeff was diagnosed with Multiple Sclerosis. He was told fitness was not going to be part of his future as an activity. Within a couple of years, Jeff was unable to walk, was visually impaired and barely able to speak.  Rather than succumb to his prognosis, he fought for the life he once knew while burying his head in research. Within a year, not only could he walk, see and speak but he used his knowledge, skills and abilities to physically train others in both sickness and in health with an emphasis on Multiple Sclerosis patients. 

Walking-Sneakers

Exercising & MS

If there’s anything certain about MS, it’s the uncertainty of the disease. Energy, strength and mobility can fluctuate over the years – especially if you’re living with Relapsing Remitting MS.

So it’s important, when considering an exercise plan, to have options that you can scale and honor your body.

Personally, I’ve always loved exercising. So my ability to maintain a consistent schedule is something I treasure. I start my mornings either at CrossFit or going for a run.

This is what works for me now.

Shortly before I was diagnosed my “workouts” looked drastically different.

The fatigue was so extreme, the most movement I could do was a child’s pose on the floor next to be bed. Slowly I worked my way to walking around the neighborhood and eventually as I went into remission I developed the stamina to strength train.

The most important thing to know when developing an MS-friendly exercise plan is to always honor what your body can do in the given moment.

Sometimes that means giving yourself a pep-talk to take a stroll around the block even though you’re feeling a little down. Other times, you may need to scale back your efforts as anyone with MS knows, the fatigue is not something you “push through.”

Only you can be the true judge in striking that right balance – and it will likely be a fluid process. But keep in mind, even small efforts with diet and lifestyle can add up to create a healing environment in your body.

Need some ideas on where to start? Check out these New Exercises and Activities to Try if You Have MS

This post originally appeared on www.alenebrennan.com. Reprinted with permission.


Alene Brennan has been featured in USA Today, Philadelphia Inquirer, Huffington Post and Mind Body Green. Alene overcame debilitating migraine headaches through diet and lifestyle and is now once again using a “Less Pharm, More Table” approach is managing her diagnosis of Multiple Sclerosis. Alene holds four certifications: Nutrition Coach, Yoga Instructor, Personal Trainer and Natural Food Chef. She also completed specialized training in nutrition for autoimmune disease specifically the Wahls Protocol and the Autoimmune Protocol. Since receiving her MS diagnosis and seeing first-hand the power of using diet and lifestyle to create a healing environment in the body, she dedicated her virtual nutrition coaching practice to helping people with MS and autoimmune dieseases take back control of their health. Visit her website, alenebrennan.com.

tai-chi-3

MS and Tai Chi

It cannot be stressed enough how important it is to stay active with MS. Movement is the key, even if you are limited in doing so. Exercise has been shown to help with strength, mobility, fatigue and depression. Exercise also has can help develop a positive attitude and make you more likely to participate in group activities. These positive attributes of exercise can really help a patient overcome some of the isolating symptoms of MS.

As someone living with MS, I am always trying to find something new and interesting that may be beneficial to those of us living with the disease. In this installment, we will learn how an ancient art may provide therapeutic healing to those of us living with MS today.

Tai chi, an ancient Chinese tradition that was originally a form of self-defense, has been transformed into a form of exercise that is considered good for people of all ages and fitness levels. Tai Chi is a series of slow movements combined with deep breathing.

Tai Chi is considered to be low impact, meaning that it does not put a lot of stress on the muscles. If you have MS and have tried yoga, but struggle to hold some of the poses, then you may want to try Tai Chi. Much like adaptive yoga, adaptive Tai Chi can be done either standing or sitting.

Tai Chi is thought to have many health benefits for people living with MS, including:

• Improved strength and balance
• Increased energy and mood
• Decreased stress, anxiety and depression

To get started in Tai Chi, it is recommended that you take a class. There are videos available, but working one-on-one with an instructor will give you a great head start. Instructors can also provide safe modifications for your ability level. If you start a Tai Chi class, meet with the instructor ahead of time. Let the instructor know of any physical limitations that you may have with MS, like balance issues.

If your instructor learns your limitations, they will ensure that they teach you a routine that is safe, yet gives you the benefit of the workout. Then, over time, you may feel yourself becoming stronger and be able to take on more of a routine with less modifications.

If you have MS and have struggled in other forms of exercise, it may be time to try Tai Chi. The health benefits associated with the ancient form of low-impact movements can help you with your battle against MS, but make sure that you let your instructor know of any limitations you may have. The key to winning the battle against MS is to stay moving which is exactly what the ancient art of Tai Chi can help you achieve.

Originally printed on MS Focus Magazine. Reprinted with permission from Matt Cavallo.


Matt Cavallo, MPH is a patient experience speaker, author, and podcaster who motivates audiences worldwide with his personal patient experience and genuine storytelling style. At age twenty-eight, Matt was diagnosed with Multiple Sclerosis. Seemingly overnight he went from a fully-functioning, healthy man to someone who was numb from the waist down and unable to walk. As a result of his diagnosis, Matt has dedicated his life to improving the patient experience. Matt is the founder of PatientActivation Network

Essential oil made from medicinal cannabis

An Introduction to Cannabis’s Role as an Emerging Therapeutic Agent

With cannabis becoming increasingly mainstream in modern culture, its population is becoming aware of its use for a number of purported medical reasons ranging from skin ailments to digestive issues and pain. California has recently allowed its recreational use. Today, the industry is still nascent with a market of ill-vetted products with equally nascent scientific claims. However, cannabis may be unique in its application to holistic care as mediated by the endocannabinoid system and thus it is prudent to know what is useful and what isn’t.

The history of cannabis use is ancient and has resulted in many breeds of cannabis which differ in the phytocannabinoid content, ratio and terpene profile. Cannabinoids are molecules that act on cannabinoid receptors that comprise the endocannabinoid system. The endocannabinoid system modulates the psychological stress, emotionality and inflammation responses. CB1 and CB2 are examples of receptors within this system whose span is diverse, for example, they are found in the brain, gut and persist in osteoarthritic cartilage despite degradation grade. Interaction with these receptors can occur through phytocannabinoids; each of which has differing effects. To complicate matters, phytocannabinoids influence the effects of one another. Furthermore, the method of delivery also influences the effects; for example, ingestion allows the liver time to process phytocannabinoids into its derivatives which have their own effects.

Tetrahydrocannabinol (THC) and cannabidiol (CBD) are two well-known examples of phytocannabinoids. THC has claims to work as an analgesic, antiemetic and antispastic; although, adverse effects include paranoia, lethargy, and tachycardia. THC can also induce euphoria which may play a role in how the analgesic properties work. CBD has claims to work as an anti-inflammatory, antiepileptic and works to block the binding of THC to CB1 and CB2 receptors. The interplay that cannabinoids have on one another has led to the notion of the “entourage effect.” (The idea that cannabis plant as a whole has curative effects.) Pharmacologically speaking, only a combination of THC and CBD, in a 1:1 formulation, manufactured by G.W. Pharmaceuticals has been vetted for its medical claims.

From oils and tinctures to hash and kush, the recreational market has driven into existence a myriad of products with a myriad of claims akin to the early days of the dietary supplement market. Assuming the source comes from one that complies with the current regulation, medical cannabis falls into three categories: plant, processed and formulations. Plant products refer to cannabis products in which the cannabinoids have not been altered and removed from the cannabis plant. These products use no heat or chemicals in their preparation and include: buds, keef, hash.

Processed products apply heat or chemicals to the cannabis plant in order to remove desired terpenes and cannabinoids. Processed products include oils, tinctures, e-juice, etc. and can be assumed to contain a higher percentage of cannabinoids in natural and unnatural ratios. Formulations are processed products whose consistency in manufacturing and medical claims have been vetted by the FDA. Formulations include products like Sativex and Epidiolex. Of course, marketing practices blurs the usage of terms; therefore, it is incumbent of the self to understand the product.


Jakub Pritz, Ph.D. has been working in the cannabis industry since 2015 as a separation operator and consultant for the production of recreational cannabis oils and other cannabis-related products.  He can attest to current cannabis production methods and what the person should be aware of.  His interest is to create botanical extracts of cannabis to be delivered in differing modalities depending on the effects sought and data affirmation.  For example dosage control in inhalation for acute pain relief, transdermal applications for arthritic pain and oral methods for digestive symptoms.  Patrons should be aware of the euphoric effects of THC and the interactions cannabinoids have with one another in varying ratios.   

Prior to this, Jakub held a post-doctoral position at UCSD’s Moore’s Cancer Center where he was in charge of data management and accruing international radiation oncology centers to join the International Evaluation of Radiotherapy Technology Effectiveness in Cervical Cancer (INTERTECC).  This trial required the coordination of several centers to follow strict data collection standards, quality checking of the institution capabilities and implementation of plan protocol.  He received his Ph.D. in Applied Physics (concentration in Medical Physics) from the University of South Florida in 2011.

As an athlete, Jakub competed in the Patriot League as a swimmer, setting records along the way.  During his graduate school years at the University of South Florida, he participated in, coached and competed with their water polo club.

Disabled Man with family practicing yoga outside.

Patient Activation Network Interview with Alene Brennan

Matt Cavallo, MPH, patient advocate, author and speaker, interviews Alene Brennan, a Nutrition Coach, Yoga Instructor, Personal Trainer and Natural Food Chef.  Alene overcame debilitating migraine headaches through diet and lifestyle and is now once again using a “Less Pharm, More Table” approach is managing her diagnosis of Multiple Sclerosis.

Since receiving her MS diagnosis and seeing first-hand the power of using diet and lifestyle to create a healing environment in the body, she dedicated her virtual nutrition coaching practice to helping people with MS and autoimmune take back control of their health. She connects with clients around the world via phone and video chat to help them transition to a healing diet and lifestyle and manage the symptoms of chronic illness.

Listen to the podcast from Patient Activation Network:

 

Our health is truly the only thing that connects us. Whatever your age, gender or background, health is the great equalizer. The Patient Activation Network was created by patients for patients to accomplish real change in healthcare. Visit patientactivationnetwork.com for more podcasts.


Matt Cavallo, MPH is a patient experience speaker, author, and podcaster who motivates audiences worldwide with his personal patient experience and genuine storytelling style. At age twenty-eight, Matt was diagnosed with Multiple Sclerosis. Seemingly overnight he went from a fully-functioning, healthy man to someone who was numb from the waist down and unable to walk. As a result of his diagnosis, Matt has dedicated his life to improving the patient experience. Matt is the founder of PatientActivation Network

senior-and-trainer

Tips for Exercising With Multiple Sclerosis

Exercise and stretching are very important for someone who has Multiple Sclerosis. Each individual, however, is different and exercises need to be tailored specifically to that person. The exercises that are chosen depend on the progression of the disease, what the individual is capable of doing, and even the day. Exercises may have to be changed if the client is too tired or is feeling stronger and has more energy.

What exactly causes Multiple Sclerosis is not known but there are symptoms to look out for. The symptoms are fatigue, walking difficulties, vision problems, spasticity or stiffness, weakness, bladder problems, depression, dizziness or vertigo, emotional changes, cognitive changes, pain, headaches, tremors and breathing problems. Exercise prescriptions need to be planned according to the symptoms that are being presented. Each time you work with your trainer talk to them about how you feel that day. This will help to ensure that you don’t overdo a workout.

Many times, we hear the saying no pain, no gain. Please keep in mind that this is not true for individuals with Multiple Sclerosis. You want the workout to feel challenging but it is important not to overheat. If you feel warm, simply take a break and continue when you feel that you have cooled down. Individuals in wheelchairs benefit from exercise as well. I would like to share an example of a client of mine.

My client, Sally, (the name has been changed) was a client of mine for 4 years. She is in a wheelchair and had no leg movement and minimal arm movement. Through exercise she is almost able to feed herself and I have her doing simple leg movements. I cannot see any leg movement but she can feel it. She reports that her muscles are sore when we are finished. The important thing is to just move.

It is important to start an exercise program slowly and to set goals. If you would like to get to 20 minutes of activity maybe start with 10. Do not assess how well you are doing by comparing yourself to others. Look for progress in yourself through reaching personal goals as in the example of my client.

As an individual with Multiple Sclerosis starts exercising they may have less depression, improved strength, better bladder and bowel function, a positive attitude and be better able to participate in social activities. Please remember that it is important to share any symptom changes with your trainer. The exercises may have to be adjusted frequently for a safe and effective workout.


Robyn Caruso is the Founder of The Stress Management Institute for Health and Fitness Professionals. She has 15 years of experience in medical based fitness.

Sources
http://www.nationalmssociety.org/Living-Well-With-MS/Health-Wellness/Exercise
http://www.webmd.com/multiple-sclerosis/guide/multiple-sclerosis-symptoms-types