Author Archives: DebbieMS

An MS Journey

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“A Picture of Health on the Outside”

I was only 25 in 1980 when my MS symptoms started. My career was taking off, I was newly married, and my husband and I were active outdoors doing things like skiing and dirt bike riding. Life was good. But like all newly-diagnosed people with MS, the fear of having the rest of my life ahead of me with a chronic, debilitating, progressive disease with no cure was frightening to say the least.

What kind of life could I expect?

Flash forward to present day, 35 years later. Life has been good despite the challenges of living with MS while also dealing with other challenges in life that “normal” people endure. Adjustments to changes in my life seemed constant, as my MS Blogger Buddy Nicole Lemelle would say, would become “My New Normal.” And I’m currently facing two more…

Truthfully, I hate MS—it’s interfering, unpredictable, and invisible in so many ways. I didn’t have a choice about getting it, but I did have a choice about whether I was going to let it control me or manage my life. It took time, but I learned to manage my MS well. It helped that I am a positive person with an “I can do this” attitude.

Difficult decisions had to be made—giving up my career, having only one child, going on disability, having to move out of my house… It was hard. But amazingly for me, in the end each difficult decision resulted in a good outcome.

I can honestly say that I have, and will continue to have a fulfilling  life with my husband of thirty-seven years and my 32-year old son. Not only have I been an avid swimmer, crafter, and reader for as long as I can remember, my love of history and nature was satisfied after visiting all fifty States, seven countries in Europe, Canada, Mexico and the Caribbean. Many of these trips I made in a wheelchair.

As I journeyed through motherhood, I enjoyed being a soccer mom, wrestling mom, homeroom mother, and a volunteer in my son’s school, church and community. In-between, I learned Spanish and tutored high-schoolers for fifteen years. And I was involved as a volunteer and in other roles in the MS community for the past thirty years. I’m proud to say I authored a book, Managing MS: Straight-Talk…  published in January 2012, and since then learned social media and built a website through which I have interacted within the MS community since.

I have always practiced health and wellness as a critical component of managing my MS and chose my medications carefully. Good sleep, regular fitness, healthy diet choices, stress management… Recently at my annual physical, my doctor said to me “I have good news and I have bad news.”

The good news? Out of all her patients that day, I was the healthiest– perfect scores on all my tests: blood pressure, weight, cholesterol, pulse, circulation, Vitamin D, calcium, and all the other things that are measured when blood is checked.

The bad news? I have severe osteoporosis in my hips and osteopenia in my spine—the worse she has ever seen. I had most of the risk factors for it: genetics, years of steroids, being thin, post-menopausal, and little weight-bearing fitness due to being in a wheelchair for fifteen years. The first of two new adjustments that I have to research and work on. This is serious stuff.

When you look at that picture of me, it is a definite portrayal of that old expression that makes all of us with MS cringe: “But you look so good!” You can’t see the osteoporosis, just like you can’t see so many of my MS symptoms. Though I use a scooter or wheelchair because I can’t walk anymore, many folks have asked me if I had an accident. They can’t see the pain, the numbness, weakness, the bladder/bowel problems, or the fatigue and emotional issues that I live with daily.

And now that the new ridiculous TV commercial about Tecfidera is airing, people are getting the misconception that there is a pill—a cure—that Relapsing/Remitting MSers can take that will give them the ability to be active and normal all day long. What a hurtful setback for me and all of the other MS patients that have been trying so hard to get people to understand what MS really is all about.

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                                                     Shame on you, Biogen.

I don’t know. At first I thought that no awareness was better than misleading awareness, but maybe this commercial will stir up the pot and get people talking more about MS.

 

Throughout my entire life, I have always been a doer and a helper with some purpose to serve. Even in the toughest spells throughout my life due to MS or something else, I forged forward to reach out. However, I’ve reached the point where I’m so tired and I hurt almost all the time now. I have been wrestling with this question for a while, “Is it time to quit?” That means the second, big adjustment into unknown territory—true retirement.

 

Actually, I won’t let go of everything completely; I will share and care about MS on a limited basis through my social media sites. But I’ll let the MS blogging be carried on by great, credible others that I got the privilege of knowing from social media and attendance to a MS Blogger Summit sponsored by EMD-Serono/Pfizer:

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MS Bloggers and some Significant-Other Caretakers

   (Sitting, L to R)
Laura Kolaczkowski
Lisa Emrich
Nicole Lemelle,
Lisa Dasis
Yvonne Desousa
Debbie Petrina
(Standing, L to R)
Jon Chandonnet
David Lyons
Stuart Schlossman
Dave Bexfield

There are other great MS bloggers around too, such as those on Multiple Sclerosis.net, that can be trusted to obtain quality MS info, inspiration and education.

Living with MS for 35 years and being involved with the MS community in so many ways teaches a person a lot of things. This is the last page of my practical MS guide book Managing MS: Straight Talk From a 31-Year Survivor that I published in January 2012:

Final Words of Inspiration

September 28, 2011

Life is precious, challenging, and worth getting out of it what you can.
Being a lover of American history, one of the items on my bucket list was to visit the actual trail of the Lewis & Clark expedition. I just returned from an RV road trip with my husband and brother to do this. During the trip, I reflected on the similarities of their journey and life with MS.

When Lewis & Clark began their journey to the Pacific Ocean across the continent, they went into unknown territory. Daily they encountered obstacles in the wilderness they had to overcome, and had to rely heavily on the support of each other/ strangers, their skills, ingenuity, and creativity in order to survive and prevail. The team of thirty-three persons suffered; one died. They experimented. They documented. They learned. They managed and accomplished incredible hardships. There were moments of the deep despair and defeat, and moments of high joy and success.

They found their way. I found my way. You will find your way.

                                                                                       Debbie

www.DebbieMS.com 
Author, MS Counselor/Consultant

 

*Image courtesy of “rakratchada torsap” portfolio at Free DigitalPhotos.net

Is This How You Feel?

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Confused? Afraid? Newly diagnosed? Think you or someone you know might have MS but don’t know where to start? Weird things going on with your body and you don’t know what to do? Your neurologist is not helpful or available? Are you lost in mounds of info?  I was in these shoes once a long time ago.

Since I have lived with MS since 1980 and have been involved with the MS Community for nearly four decades, I know this disease inside and out. Seeing a great need to have a lot of credible “What-to-know—What to Do” MS information all in one place, I rolled up my sleeves and have been hard at work to help.

Managing MS a simplified, practical, all-in-one self-help guide for managing and understanding MS. I authored and dedicated this book to my MS peers to help them and their loved ones live with this invisible, unpredictable, disabling disease. Within hours, the reader will gain knowledge and support so that action can be taken enabling better control. There are many books about multiple sclerosis but I like to point out these things about mine:

• I felt it crucial to make it an easy read using a tone, words and expressions that would enable the reader to feel comfortable. Like I am talking at the kitchen table with them. Living with MS is frightening; one of my objectives was to help reduce the fear.

• Living with MS is not easy and is very complicated in many ways: the symptoms, the treatments, the medical professionals, relationships with people, the emotions, and the advancing disabilities. Thus, another objective of mine was to offer guidance and tips for managing these things in a manner that is easy to understand—like an instruction manual. I strived to make it compact, informative, and inspiring.

• This guidebook is a collaboration of both my experiences and those with peers, MS bloggers, professionals, and others that I interacted with about MS in for decades.  It was read and endorsed by health care professionals in different fields that I believe lends credibility: an MS specialist neurologist, an internist, a MS physical therapist, nurses, dietitian.

Who should read this book? Anyone who might have MS, has been diagnosed with MS, family, friends, or people who deal with MS patients such as doctors/healthcare personnel.

Diane Perry, NPC,  Consultants in Internal Medicine in Glendale stated:
“As a nurse practitioner, the book opened my eyes to the effects of the disease on my patients’ lives and their needs. This is not a textbook read.”

Carol Daily, CRNP MSN, [PwMS] in her review said “This book should be given to every person having MS, I encourage any MS organization, medical staff, family or friend to do so and to read it also, especially the medical staff, (so you guys can give better advice).”

I counsel, write, research, and advocate awareness/education of MS through my website and other social media. Continuously. This is my purpose in life,

Please go to my website, check it all out, and decide for yourself. If you do read Managing MS, make sure to tell me what you think in a review or an email through my website.

 

Debbie Petrina
Author of (2nd Edition) Managing MS 
Moderator, MultipleSclerosis.net 

 

 

 

MS Bloggers, Old MS Vets, and the MS Community

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“Engage and Listen to the Real Experts”

The MS Community is unique. There is an immense connection between MSers to share, ask and learn information about living with multiple sclerosis. A comradery of support to each other to continue moving forward through good and bad times as they are saddled with a “progressive”, lifetime disease with no cure. Friendship and gratitude are beyond words to describe them.

The MSers in the MS Community work their butts off trying to create awareness, education, advocacy, and fundraise. They initiated and are now collecting patient information through iConquerMS to enhance MS research for patient treatments.

Within this community of MSers that I have been a part of for three decades, I distinguish two groups of who are the real MS experts, who can be relied upon and trusted for credible knowledge and guidance:

• The “Elite” MS Bloggers
These are MSers who have lived with MS for years, and dedicate their lives every day writing to help MS patients survive. I call them “Elite”, because these bloggers aren’t just writing stories; they immerse themselves in a variety of activities and social/media platforms related to MS for a dedicated purpose. Each one has their special purpose in the MS arena—to educate, advocate, inspire, provide humor, research, or focus on wellness such as fitness, being active, etc.

As a group, they work and share with each other and more recently, some of the best MS bloggers had the opportunity due to several Pharma summits to meet each other. Both individually and as a group, they are a powerhouse of experience and ingenuity. Prior to their roles in and for the MS community, their professional backgrounds would knock your socks off.
I know, because I have met, shared, and worked with them.

• The ‘Ol MS Vets

“The ‘Ol MS Vets” are the MSers that have lived with MS for more than thirty years. They are the ones whose life started in the Dark Ages—no MRI’s or sophisticated diagnostic tests, no Disease Modifying Treatments, limited research, scant MS awareness or literature, no social media…

‘Ol MS vets know MS well, and are full of wisdom. So many learned to manage their MS well and led full, quality lives. Yet, they are sadly passed over as a source of realistic and honest knowledge and support by non-MS patients.

It is amazing why these folks are not included in discussion panels at events. Pharma companies just within the past year or two recognized what MS bloggers could offer them. They reached out and hosted MS blogger summits to get their expertise, information and ideas to help them create their own MS support services. Then they took a step further and invited these MS experts to lead workshops around the country on specific MS-related topics and symptoms.

Why aren’t other large MS or neurological events and conventions including these MS experts for their input, participation, and guidance? Neurologists are in the forefront as the primary presenters and Q/A panels. Sure, all these events will have a person with MS tell a personal, general story about their MS experience, but that is about as far as it goes. Why isn’t there a group of MS experts on a Q/A panel for the audience? Or a table set up with actual MS peer counselors in an area where MS patients can speak face-to-face with someone for guidance? Why aren’t they used as credible spokespersons?

Neurologists may be pros on MS methodology and gathering research, and but WE are the pros on actual MS experience. I bet each of us bloggers have spoken to thousands of people that would supersede the number of patients a neurologist would have as MS patients.

Personally, I would go toe-to-toe with ANY neurologist on ANY MS-related subject or issue. I cringe when I see or hear “consult with your doctor about…” So many MS patients have a poor relationship with their neurologists. Patients don’t know everything, but neither do the neurologists, or researchers. Why isn’t there collaboration?

Last month, there was an event in Rome called the International Multiple Sclerosis Conference. They stated:

“Unlike many other events focused on novel MS treatments, the conference in Rome, entitled “Raising standards: The voice of people with MS,” will be focused on MS patients and how their expertise can help treat the disease. “This event is different,” explained Kaz Aston in a press release. “Because it’s all about the patient, and about the ‘expert patient” as a concept — recognizing that MS patients have a lot to bring to the table.”

Sure, the MS community is interested in learning about the latest research to stop, prevent, rehabilitate, and cure MS. But there is a whole lot more than research and drugs that the MS patient needs in order to manage their MS–which includes a broad spectrum of things both inside and outside the MS community.

Truthfully, I have to crack up when we are told research studies are needed and are now going on for the impact of things like stress, fitness, and massage on MS. Are you kidding me?

When will we MSers be included, listened to, and taken seriously?

www.DebbieMS.com
Author/MS Counselor/Living with MS

* Image courtesy of Stuart Miles at FreeDigitalPhotos.net

Brain Health: What to Know, What to Do”

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“Take Care of your Brain”

Those affected by Multiple Sclerosis know that MS is a disease of the brain, spinal cord and the optic nerves. When MSers think of their brain, most are concerned about the lesions and possible cognitive impairment. Some people are aware that emotions such as depression and mood swings can also be directly affected by the brain.

But I bet most folks don’t think or even know that one can take care of their brain to help manage their MS symptoms and progression. Brain health is a crucial component of one’s overall health and wellness.

As a person who has lived with MS for decades and loves to research, I find myself reading almost daily about the brain. I am equally fascinated both by the tremendous amount of research that has occurred about this complicated organ and what is has been learned about it just in the past few years. More attention and funding for research is occurring such as “The Brain Initiative”,  where the National Institutes of Health (NIH) has committed $40 million in the first year to develop better technologies for investigating the brain. The goal, among many, is to map the activity of every neuron and cell in the brain. This week, Arizona State University and Banner Health will team together to form a new brain research lab focused on Alzheimer’s, Parkinson’s and other brain-related diseases.

SO HOW DO YOU TAKE CARE OF YOUR BRAIN?

There are many things that can be done specifically for the brain just like one would do for overall wellness: getting enough good sleep, exercise, diet, stress less, etc. that are listed as main categories below. However, I have included many links to excellent articles from credible sources that expands/explains much more information for your knowledge/interests.

• Sleep: a #1 Priority

Sleep affects EVERYTHING in the body—your heart, energy level, pain, weight, and even skin. Your brain cannot function well without it. It affects your mental state: judgment, reaction times, moods, memory, concentration and decision making. Sleep enables your brain to process information and store it in your memory; it rejuvenates parts of your brain that was used during the day and even parts that are not normally used.

Scientists say sleep is nature’s panacea, more powerful than any drug in its ability to restore and rejuvenate the human brain and body. Studies consistently show that people who sleep less than eight hours a night don’t perform as well on concentration and memory tests. Check out these excellent articles for more detail:

“The Power of Sleep” New research shows a good night’s rest isn’t a luxury–it’s critical for your brain and for your health. Time Magazine 9/11/14  

“Why is sleep so important to the immune system?”

Many people with MS have sleep issues, due to a variety of reasons. Here is a blog post of mine that addresses this subject may be helpful “MS and Sleep”

• Exercise your Brain

Quite simply, the brain is similar to a muscle—you use it or lose it.

When I was a little girl, my aunt would always tell me to “use my intelligence” for making decisions, solving problems or looking for an answer to something. I was forced to use logic, common sense, imagination, creativity and social skills. Television was limited, and my mother made me read every night until I started middle school. They were wise and I was gifted because of it. I yearned to learn and am still doing it.

My cognitive function is now beginning to slip a bit—because of age? MS? menopause? Who knows, but I know there are brain exercises and other things that can be done to help keep my mind sharp.

A great place to get started is at the AARP Brain Health and Wellness website, where in addition to forms of solitaire, you can work on your memory, math skills, vocabulary, analytical skills and concentration by playing eight games such as “The Right Word” and “Private Eye.” You can pick your skill level on a sliding scale. Be sure to try the examples. The games are challenging — and addicting.

• Diet – “Brain Food”

Yes—there are foods that are specifically good for the brain. And what is good for the brain is also good for the body.

For example, avocados increase blood flow to the brain, and may help in lowering blood pressure. Deep-water fish, such as salmon, are rich in omega-3 essential fatty acids, which are essential for brain function. Omega-3s also contain anti-inflammatory substances. Beans stabilize glucose (blood sugar) levels, the brain is dependent on glucose for fuel. Freshly-brewed tea can boost brain power by enhancing memory, focus, and mood. Tea also has potent antioxidants, which promotes healthy blood flow. Check out“Eat Smart for a Healthier Brain”, or Google away!

• What is good for your heart is good for your brain**

Taking the following steps to keep your heart healthy may also help stave off cognitive decline:

• Don’t smoke.
• Sleep 7–8 hours a night.
• Keep your blood pressure and cholesterol levels in check.
• Eat a low-fat, healthy diet.
• Get plenty of exercise.
• Maintain a healthy weight.
• Limit alcohol consumption.
• Get blood sugar levels (and diabetes, if you have it) under control.

While scientists have traditionally viewed brain cells as finite resources, they’re now learning that the brain continues regenerating and forming new connections throughout one’s life. Although most cognitive reserve is probably built up early in life, engaging in mentally stimulating activities at any age may have a positive effect—and it doesn’t have any negative side effects.

**Source: “Staying Sharp: What you do during your free time could help save your brain.”

• Stress Less

It doesn’t take a rocket scientist to know that stress affects moods, emotions, concentration and many other parts of the body. Everyone has stress in their lives, but it’s the chronic stress that will really activate an immune system response—something MSers do not want.

This recent article discusses the implications stress can have on the immune system and change brain chemistry. It is definitely worth a read: “From The Brain to the Immune System, How Stress Pirates Your Whole Body”

What de-stresses you? Music? Taking a rest? Talking to a friend? Deep breathing and Yoga? Therapy? Actions to de-stress are critical for your overall wellness, and for managing your MS.

• Drugs/Medications

There is no question that all drugs have side effects and work differently for different people—both on the body and the brain. But folks need to do their homework, ask a lot of questions, and weigh the benefits vs. risks of each drug that is taken—both in the short-term and the long-term. In my opinion,

o YOU are in charge ultimately, not your doctor or anyone else.
o YOU know your body best.
o YOU acquire knowledge about the drugs.
o YOU take responsibility for monitoring what you are taking, keeping notes…

It sounds like common sense, but it is amazing how many people don’t do these things. One woman I counseled with MS was freaking out about losing her cognitive function. During our conversation, I learned she was taking a sleeping pill, anxiety pills, and pain pills every day! Another woman I spoke with last week said her neurologist wanted to start her on a DMT, and she wasn’t definitely diagnosed with MS yet!

The following websites are for further information and interest:

“Common Causes of Brain Fog: How to Deal with Brain and Mental Fatigue”

Brain Health Center (AARP) Lots of cool info about the brain: memory, fitness, diet, sleep…

The Link Between Your Immune System, Brain, and Alzheimer’s

“Are Cognitive Problems Blamed Too Much on MS?”

The brain is the most important part of the body—protect and take care of it!

www.DebbieMS.com
Author/MS Counselor/Living with MS

*Image courtesy of atibodyphoto at FreeDigitalPhotos.net

MS: Health and Wellness

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“Critical for MS Management and Control”

It’s the new buzz phrase for multiple sclerosis. And it’s about time it’s getting attention.

But will it get the proper messages and info out about what MS “Health and Wellness” actually is? I’ve seen the words “Diet” “Exercise” and “Emotions” as the main categories for the new Health and Wellness strategy for helping to manage MS. But there are a lot of sub-categories under each of these groups, and there is much more to Health and Wellness than just these groups.

I wrote my book three years ago (Managing MS: Straight Talk…) and listed “My Ten Commandments” as my primary way of handling my MS. Guess what? It’s about the health and wellness ways I follow to not only manage my MS, but also to control the progression of it.

t’s the other side of that coin for MS management strategies—non-medicinal vs. medicinal. A side that has been neglected or not addressed for years.

Here’s the goal for MSers: Until a cure is discovered, or restorative abilities to damaged areas are found, it is paramount that a person with MS lives with their primary goal to prevent as much damage to the nervous system as possible.

HOW DO WE DO THAT?

We know that MS is an autoimmune disease, and when our body is under attack by something like sickness, infection, physical or emotional injury, etc., our immune system’s army of fighter cells screw up on their job and attack our brain, spinal cord, and optic nerves instead of the foreign invaders. Attacks lead to inflammation, relapses, lesions, damage and so on.

• Major attention has to focus on keeping our immune system CALM. Good, conscientious health and wellness will keep the body’s resistance strong against those culprits that trigger activation of the immune system. Develop habits to prevent sickness, infection, injury and chronic stress. For circumstances beyond our control (e.g. a death, a catastrophe…) reach out to get as much help and support as possible.

There are many dimensions of health/wellness that include but are not limited to:

**Physical Wellness: such as sleeping, eating, and exercising properly; watching your   weight; avoiding the use of tobacco, drugs, and excessive alcohol consumption.

**Social Wellness: having healthy, positive interpersonal relationships with family, friends, pets and others.

**Spiritual Wellness: finding meaning and purpose in life. This may or may not include religion.

**Emotional Wellness: understanding our feelings and emotions and knowing action plans to follow when needed

**Intellectual Wellness: maintaining cognitive stimulation to prevent mental stagnation. It is a lifelong process of mental challenges and creativity.

• All DMTs (Disease Modifying Treatments) work by suppressing, or altering, the activity of the immune system. These therapies are based on the theory that MS is, at least in part, a result of an abnormal response of the body’s immune system that causes it to attack the myelin surrounding nerves. Corticosteroids used to treat relapses also suppress the immune system.

What does this mean? When the immune system is suppressed, the body is more susceptible to infections and illness, and thus relapses. Therefore, it is imperative that all good health and wellness habits be followed. For example, if you take Solumedrol, avoid people with colds and viruses. At the first sign of a UTI infection, get on an antibiotic. You can take care of your health so that your immune system isn’t ‘triggered’ to act due to illness, etc.

• One must think of health and wellness both in the short and long term. After all, there is no cure yet and nobody knows if/when that will happen. We have one body, and we need to protect it, be proactive, and make prudent choices. For example, every drug that is taken has to be processed through the liver; what are the risks vs. benefits of any drug we take regularly after 10, 20, 30 or 40 years?

Everyone has their own stories and experiences with MS. Here’s mine:

In 1980 when my first major attack happened, I was only 25. Since there was scant literature about MS, it took a awhile to understand the disease and figure out what to do. I finally learned proper health and wellness for MS that I followed for decades and am still learning as new things emerge.

Flash forward 34 years. I just turned sixty. I never took a DMT, had only two MRI’s, quit smoking in 1987 and having been swimming 3x/week for thirty years. I weigh 115 lbs., and have perfect scores on all my tests: blood pressure, cholesterol, pulse, circulation, Vitamin D and all the other things that are measured when blood is checked. Although I have been self-cathing for 28 years, both my bladder and kidneys are as good as a “normal” person’s due to good neurogenic bladder management. Meds are taken for spasticity, depression, and bladder regularly, and for sleeping/anxiety as needed. I practice yoga, deep breathing and stretching for pain and stress. Tutoring Spanish for years and reading/researching technical data surely help my cognitive function.

Yes, I am the one in four who ended up in a wheelchair, but the strength and agility in my upper body and trunk enable me to do many things independently, including driving.

Is it easy? Quite frankly, no. It takes a tremendous amount of discipline, determination, and control. And now that I am starting my seventh decade of life, I am slowing down.

But I know two things. First, if I didn’t practice good health and wellness, my MS would be so much worse. Second, if/when that breakthrough for remyelination or a cure arrives, I’m in great shape for it.

www.DebbieMS.com
Author/ MS Counselor/Living with MS

 

*Image courtesy of David Castillo Dominici at FreeDigitalPhotos.net

 

 

 

The Power of the Brain: A Coping Mechanism

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                  This has been what my head and life has been these past several months.

Scrambled. Out of order. Unfocused. Need of repair.

My usual ‘normal’ MS life was severely disrupted several months ago. For me, first a virus that took a long time to go away, then a badly injured right shoulder rotator cuff, then cancer surgery. Meantime, my hubby has been going through the process to determine the cause of his severe joint pain and swelling; possible RA? Don’t know yet, but only know that sometimes he’s worse off than me. I’m now a caregiver and patient. And then the problems with my aging mother, finances…

Somehow we manage to cope and find the strength to keep going.  How?

One of my favorite MS blog posts I wrote is “The Power of the Brain” https://blog.debbiems.com/?p=310 . I pull it out from time to time and read it for my own inspiration.

Since I can’t seem to find the time, energy, or the focus to write and continue my blog yet, I thought I would repeat this post. I hope it will inspire you, too.

www.DebbieMS.com
Author, MS Counselor, Living with MS

Why MS Doesn’t Scare Me Anymore

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“Overcoming Fear”

January 11, 2015

Fear can be paralyzing. It interferes or overtakes one’s thoughts and actions. Fear causes immense stress. People with MS are confronted with it before, during and after diagnosis constantly. After all, there is no cure for MS, no two cases are alike, and it is highly unpredictable in its course.

To make matters worse, fear is intensified by what is read or said by others, health professionals and social media. The fear of ending up in a wheelchair or becoming very mobility impaired; the fear of losing cognitive abilities, the fear of losing employment or becoming incapacitated….

Even MS Associations who try to portray MS in a positive light often unintentionally create fear due to their messages of “get on a treatment ASAP” or “you need to call your doctor…” Lately, all of the emphasis on cognitive issues causes misconceptions that losing one’s mental faculties is inevitable; or a memory problem such as brain fog is due to MS.

I lived with that fear of the unknown, and with the thoughts of the many “what-if scenarios.” After my first ten years of living with MS, I didn’t fear it anymore; and I still don’t.

Why not?

• As time went, I realized that the more knowledge and experience I gained, the less fear I had. I got to know my body relative to my own MS patterns and responses, adjusted my lifestyle, and learned how to manage both my MS and my personal life. I felt more in control of my MS; the more control I acquired, the less fear I had. Yes—MS is a manageable disease.

The most common triggers of MS symptoms are stress, fatigue, and temperature/weather changes. Learning how to manage these triggers usually settle the symptoms down and prevent a relapse. By not managing them, they will become chronic which will lead to a flare/relapse.

• Research taught me that statistics were on my side. Here are some major fears, with research to show that they are not as bad as many think:

**It is estimated that 40-50% of people with MS experience mild to moderate impairment; severe cognitive decline like dementia are extremely rare (source: MSIF.org). Check out this MS post—“Are Cognitive Problems Blamed Too Much on MS?”

** Over a lifetime, only 20-25% end up confined to a wheelchair. That was the statistic in 1980, and it probably is less today due to the development of the disease-modifying drugs that have been available since the mid-90’s.” Check out this post “The Truth about MS and Wheelchairs”

**There are more benign cases of MS than publicized. For example, a current starting point is to get specific data on DMT’s from reliable sources. On Page 13 of “The Use of Disease-Modifying Therapies in MS: Principles and Current Evidence” (The MS Coalition– http://bit.ly/1oEnTqY ), the colleagues point out that 50% of persons diagnosed will have “benign MS”. People with benign MS will have an Expanded Disability Status Score (EDSS) 6 and 23% had converted to SPMS.
Read closely, and always double-check hear-say. Another post to read–“Where and how to get your information.”

• Reaching out and accepting support from family, friends and the MS community helps immensely in minimizing stress. My physical, mental and emotional states were significantly improved. I wasn’t alone. Those that really want to help—let them and tell them how.

• Having a focus on overall wellness and health is a priority. When one feels better physically, one will also feel better emotionally and mentally. It is common sense but it’s amazing how many people lose sight of this. In addition, I take all measures to prevent flus, colds, sickness and injuries. These will lead to relapses, thus frequently resulting in MS progression.

• The advancements in research for treatments and a cure have been increasing exponentially. It WILL happen in your lifetime.

• The brain is a powerful organ, and it is gratifying that brain health is finally being addressed. The brain CAN be retrained and repair itself to a certain degree. I had symptoms for years that I no longer have.

I’m an ol’ MS vet, and there are many of us out there. We are folks who have lived and survived MS well for decades, and most would agree with what I just wrote. We know, and we are a positive group. And more positivity will also reduce fear.

It took me ten years to get over my fear of having MS; nowadays, that span of time should be much shorter. After all, it was still the dark ages for both MS and me between 1980 and 1990. Times have changed.

www.DebbieMS.com
Author, MS Counselor, Living with MS

How do you Manage MS?

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“Want some help?”

Everybody wants a cure for MS, to halt the progression of it, and restore the damage it causes to us. But what do you do in the meantime until those things happen?

You manage your MS effectively.

If you ask people with MS how they manage it, most would respond by saying what treatments/meds they are taking and then add that they may exercise, do yoga, etc.

While this is true, it’s only a small part of a big answer. Everything about MS is complicated: the diagnosis, the symptoms and relapses, treatments, health team support, relationships, the explanation…  ALL of these things have to be managed effectively in order to survive MS.

One who manages their MS effectively is also helping to control their symptoms, relapses and the course and thus progression of their case. Yes, let me repeat that– One who manages their MS effectively is also helping to control their symptoms, relapses and the course and thus progression of their case.

I know, and I know countless others who know. Beginning in 1980, I’ve lived with it for 34 years, and have been actively involved in the MS community for nearly thirty years. An ordinary person of moderate means, I went through motherhood, had a career I had to eventually give up, managed a household, and enjoyed life.

In a nutshell, these are the main objectives in managing MS:

1. Prevent sickness/infections, physical problems, and long-term chronic stress.
Why?  Because any of these will trigger a relapse. And relapses usually result in progression and nervous system damage.

2. Take care of  your body in all ways to be healthy.
This includes getting enough sleep, exercise, eating sensibly, managing stress, being mentally and emotionally happy, etc. This also includes things like weight watching, no smoking, etc.

Why?  Staying healthy keeps one’s resistance up to prevent getting sick (thus preventing relapses) as well as keeping symptoms from intensifying. In addition, maintaining wellness helps prevent your body from getting other serious problems like high blood pressure, diabetes, poor circulation…

3. Carefully choose and monitor your treatments.
While drugs are often helpful for treating symptoms, relapses and slowing progression of MS, there are downsides.  First, one must remember that all drugs have side effects that add stress and other impairments to the body. Second, MS is a life sentence; one may live decades until a cure is discovered to halt progression or restore damage. Every drug taken is passed though the liver and has other risks. There is not a treatment that exists today that totally halts progression, relapses, or improves symptoms.

4. Use a 2-prong approach when managing symptoms.
In addition to using medications, there are SO many ways that MS symptoms can be managed non-medicinally—pain, spasticity, bladder issues…  Often, using a combination of using medicinal and non-medicinal means together can be helpful as well. For example, I take baclofen and do stretching exercises daily to reduce my spasticity.

In addition, alternative non-medicinal therapies  have been successful like yoga, acupuncture, massage, pilates, etc. to help with symptoms.

Managing MS effectively requires a tremendous amount of knowledge and support. It’s hard, it takes time, requires change, but it works.  However, learning to managing MS is a daunting task because we know that no two MS cases are alike and the disease is so unpredictable. Furthermore, because there is so much information available from so many sources, one can become overwhelmed and confused.

Want some help?

My book “Managing MS: Straight Talk…” is now available on eBooks for only $2.99 . You can also check out my website below for oodles of info—articles/resources with links, videos, my MS blog of nearly seventy articles, my credentials… The information is accurate, easy to understand, and concise.

My personal mission is to help others dealing with MS, and these two tools—my book and my website—will definitely help you with something. There is nothing to lose, and I guarantee something to gain!

 

**Video:  “How to Manage MS: Two Tools”
https://www.youtube.com/watch?v=iliPH66JCaw

www.DebbieMS.com
Author/MS Counselor/Living with MS

Explaining MS Fatigue

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November 6, 2014

Ninety percent of patients with MS suffer with fatigue. Fatigue is an extremely debilitating MS symptom and difficult to manage.

MS fatigue is more than being tired from a lack of sleep or a very busy day. It is a direct result of the disease itself, and is easily intensified by the other MS symptoms (such as extra energy required to walk), external factors (such as heat or dehydration), and health issues (such as colds/viruses, being overweight…).

Being an invisible symptom, fatigue is hard for people without MS to be aware of it, understand it, and realize the severe limitations it can impose on MSers.
I started an MS group discussion on LinkIn entitled “How do/would you explain your MS fatigue to people to try to make them understand it?” Over fifty comments were received to date, and here are some of the comments:

“I tell people that it is like the exhaustion you get when you have the flu- only multiplied by 20 and NEVER goes away…”

“I heard it explained once and it seemed exactly right. MS fatigue is using every ounce of energy in your body just to breathe.”

“Add 5 lbs. weights to both biceps, forearms, calves, thighs…etc.”

“There is no way to explain it properly. Everyone still thinks it’s just plain tiredness. They don’t get that fatigue is totally different. I once said “when I am fatigued and am in bed, sometimes I feel that peeing the bed is my only option.”

“I ask them to imagine they are coming down with a flu/cold, then recall how tired they are.”

“There is no explaining to others why my body needs to sleep when I have only been awake a short bit.”

“I liken it to hitting a brick wall so hard that you don’t bounce back but instead just slide to the ground and not able to pick myself back up.”

“People just don’t ‘get’ the difference between extreme fatigue and general tiredness – some think they are feeling the same as you are but they don’t know the half of it!!”

“Thank you guys so much for this discussion! I hear all the time “Well, I have trouble sleeping too… maybe you should just go to bed earlier.”Errrrgh! It’s not like that people!

“I tell them that my best day fatigued (tired) is like their worst day. Then they seem to get it.”

The truth is, most people don’t get it. But the upside is that our neurologists and peers DO get it, and that’s where we can get our comfort. And fortunately, fatigue is a symptom that is finally recognized by Social Security when applying for disability benefits.

For those that don’t get it, you can try handing them a copy of this post or a previous post of mine entitled “Fatigue and MS”. It never hurts to try.

www.DebbieMS.com
Author/MS Counselor/Living with MS

Where and How to get Your MS Information

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                                                  “Tips and Cautions”

The upside of the internet and social media is that mounds of information about MS are available immediately with the stroke of a few keys and searches. Folks need as much knowledge that they can get to help them understand and handle this complicated disease.

The downside of the net–besides being overwhelming–is that one has to be very careful with the validity of the source and information of what is read. I read discussions between MSers on Facebook, other social media, and MS Association sites and am concerned by how much info is misleading, incorrect, and cause for fear. Bad information causes bad decisions.

1. Understand which treatments/drugs help symptom improvement.

While it is gratifying that DMTs (Disease-Modifying Therapies) are reducing relapses for many MSers, participants in some discussions talk about how their symptoms improved when they were taking a certain DMT.

This is not true. Here is what one MS specialist-neurologist stated:

“The disease modifying medications do not directly help with symptoms in MS. these medications are to delay disability, slow progression and some can have improvements on MRIs. I can tell you that I have seen people in my clinic that had been doing well for years and so didn’t start any medications. But, then they had an attack that hit them quite hard. Then they wanted to go on a medication, “to get better. I told them that the medications are to keep from getting worse and not to make one better.”(see Source #1 below)

Now, there ARE drugs to directly and successfully treat symptoms (e.g. depression, bladder incontinence…), and relapses (e.g. steroids). These often improve symptoms and help a patient feel better, but not alter the disease course or direction of the disease itself.

2. No treatment exists today that will stop the disease activity/progression and damage completely, or reverses it. (see Source #2 below)

Recently, I followed a discussion on FB about stem cell treatments that miraculously accomplished this for them.  Most of the participants that had the procedure were diagnosed within the past two-three years. These participates probably did not know their personal pattern of relapses; it’s not uncommon to lose one’s sight or have impaired mobility for a long stretch of time in their initial relapses. Their recovery was more likely due to the relapse being over and they’re being back into remission with little residual, which is very common in the early years of the disease.

Furthermore, it takes a while for a patient to understand their own case of MS and how their body responds to a variety of things—both medicinal and non-medicinal. Nowadays, it is even more difficult since a newly-diagnosed person during their first couple of years are receiving DMTs and drugs for relapses and symptoms all at the same time. What is doing what?

3. Be careful with reading statistics, study results, etc.

I worked a number of years in my professional jobs doing financial analyses and market research. One of the things I know from that experience is that conclusions of studies can be misleading by what numbers are used and how numbers are presented. I’ve become quite the cynic about this.

For example, one might read “according this study, 50% of patients using XYZ showed a 38% reduction in…” How many people were used in the study, what were their characteristics, how long did they take XYZ, what were their side effects, who did the study, etc. You have to dig deeper, be cautious, use common sense and talk to your professionals when you hear something of interest and want to pursue it (like trying a new medication).

How would you feel if you discovered that a study was based on eight people?

4. When gathering information, consider the following:

• Use common sense and logic.
• If something sounds too good to be true, it probably is.
• Listen to your gut, not what you want to hear.
• There is no cure, and if something says you will be cured, throw it away. You can manage MS and even control it in many ways, but there is no cure yet.

5. What are good Sources of Information?

MS associations and Pharmas are good sources of information that can be trusted for acquiring basic MS knowledge about the disease itself, the symptoms, current research/events that are happening, and treatments that are available. They also can be helpful in providing programs and forums for people dealing with MS to get together and interact.

Where to use caution?

• When listening/reading information that MS associations, Pharmas, and neurologists present statistical information about study/treatment results. They all recommend DMTs as the first line of defense, and one has to be careful of taking this information at face value. Re-read #3 above, and know that numbers/statistics can be arranged to project just about anything. Dig deeper into what you are told. You may be surprised.

For example, a current starting point to get specific data on DMT’s is Source #2 below. And read closely. On Page 13, the colleagues point out that 50% of persons diagnosed will have “benign MS”. People with benign MS will have an Expanded Disability Status Score (EDSS)<3 after 10 years.  After 20 years they found while 51% remained benign, 21% had progressed to EDSS >6 and 23% had converted to SPMS.

The point? Stats like these could help a patient weigh their options more carefully.

• A standard line of advice is “consult with your doctor.” Do you trust your doctor? How experienced is your doctor with MS? Does your doctor listen to you and talk with you, respect your questions and doubts? If the answer is no to any of these, it’s a red flag. Remember that doctors get kickbacks, and truthfully are limited to prescribing drugs and giving referrals. Get second and even third opinions.

• Social media sites are wonderful for sharing information and feelings with other peers, but remember that two-thirds of effective communication is through body language. There is no eye contact, no voice to hear, etc. that can make judgment of people difficult. Learn the background of the people you engage with. If reading an MS blog, make sure it is a credible, respected and experienced person that is doing the writing.

Here is a link to my Resources/Links page on my website that is quite comprehensive, not overwhelming, and judged by many to be trusted http://debbiems.com/links-resources_271.html . (You can check out my background, experience and credentials in other sections of my site.)

(Sources)
#1 The NPR Diane Rehm Show (9/24/2012) aired “Diagnosing, Treating and Living with MS.” A panel of experts—neurologists/MS Specialists including a doctor who has MS—answered audience questions about diagnosing, treating and living with multiple sclerosis.

#2 The Use of Disease-Modifying Therapies in Multiple Sclerosis: Principles and Current Evidence http://bit.ly/1oEnTqY  September, 2012

www.DebbieMS.com
Author/MS Counselor/Living with MS

Image courtesy of Stuart Miles at FreeDigitalPhotos.net