Why MS Doesn’t Scare Me Anymore

“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?

“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

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

The Optimist and the Pessimist

“Attitude is Everything”


August 6, 2014

I am an optimist. My husband is a pessimist. If I say “wow, the sky is so blue”, he’ll say “I hate the sun, I like it cloudy.”

They say opposites attract but sometimes I don’t know how I have survived 36 years of marriage with a person who is a pessimist.

My husband and I just got back from a mini camping trip in our RV and truthfully, it really was frustrating. It rained constantly for almost the entire trip, so we were confined to stay in the RV. For me, it was cozy listening to the rain while reading a novel and watching movies. For him, he seemed to complain about everything and didn’t even want to play cards with me.

After being in this situation, I started writing a post about why the need to vent from time to time is essential to your health. This morning I was going to finish it when I came across this article about optimism and pessimism in the newspaper. I felt like it was written for me.

This article is so important, I once again decided to postpone my post-in-process and share this. Not only is optimism necessary to survive life, it is necessary to survive MS. Pessimistic people drag you down, something that is not good if you are trying to cope with a chronic illness.

Optimism trumps pessimism in workplace, life

President Harry S. Truman once said, “A pessimist is one who makes difficulties of his opportunities, and an optimist is one who makes opportunities of his difficulties.”

Which do you think will reach their goals, live a happy life and achieve their dreams?

Imagine interviewing two people who have identical skills, but one is always grumbling about how unfair life can be, while the other one talks about what wonderful possibilities exist.

Naturally, you would gravitate toward the optimist. If you choose the pessimist, you would be setting yourself up for plenty of aggravation and disappointment, not to mention the negative impact on your staff and customers. Pessimism can bring everyone down, not just the person with the negative attitude.

Pessimism is nothing more than self-sabotage. Expecting only the worst is not being realistic. Realists hope for the best but prepare for the worst. Pessimists can’t imagine the best, so they prepare for the worst. And then if the worst never happens? Pessimists often find the worst possible result simply to prove that their concerns were right.

The question becomes, would you rather be right than be happy? That’s not being realistic, either. That’s being self-defeating. Pessimism can rob you of your energy, sap you of your strength and drain you of your dreams.

Optimism is the remedy. Optimism doesn’t mean pre¬tending life is always wonderful. Optimism means embracing reality. You accept that there will be bad days, but also good days. When you’re grounded in reality, you know where you are and how far you need to go. Once you know how far your goal may be from where you are, optimism can give you the motivation to make plans to get to where you want to go.

Pessimists see life as one problem after another. Optimists see life as one opportunity after another.

How you look at life can drastically affect how much you enjoy your life. Optimists expect the best out of life.

Does it make sense that pessimists tend to blame others or circumstances for their failures?

Optimists help create some of the good they come to expect, so they are probably right more often than not — and they don’t waste time worrying about what they’re not right about. Optimism relaxes people. When we’re relaxed, there is better blood flow to the brain, which results in more energy and creativity in your life.

There is virtually nothing that you can’t do if you set your mind to it. You cannot control events in your life, but you can control how you react.

Do you want to be a pessimist and have no hope for a better future? Or would you rather be an optimist and believe you can achieve a better future?

Mackay’s Moral: Attitude is the mind’s paintbrush — it can color any situation.

Harvey Mackay is the author of the New York Times best-seller “Swim With the Sharks Without Being Eaten Alive.” He can be reached through his website, harveymackay.com, or by e-mailing harvey@mackay.com.

In my situation, I learned years ago how to ignore or escape my husband’s negativity. While I succeeded most of the time, the times that I couldn’t get away from it caused tremendous stress. Not only did the stress impact my MS symptoms negatively, it would make me moody and stifle my motivation to move forward. Fortunately, I am a strong-willed person and almost always found alternative sources of optimism (e.g. friends, enjoyable interests/activities…) to lift me up before I got dragged into the depths of an abyss.

Now, in all fairness, my husband is a great guy and has many positive attributes. None of us is perfect. I am a sensitive person who cries easily or pouts. Personality traits are difficult to change; a person has to recognize a change needs to be made and then take great effort to make the changes. But this is a slow process that requires much patience.

If you don’t live with a pessimistic person, it’s easy to get away from him/her. An optimist living with a pessimist will be a lethal combination if coping mechanisms can’t be accomplished.

I know from experience. And I know that one of main reasons I have survived managing my MS is because I am an optimist. Attitude is everything.

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

MS Blogs

January 12, 2014

I am proud to announce that my MS Blog was selected for Neurology Now Magazine’s list of Patient Bloggers! http://journals.lww.com/neurologynow/Fulltext/2013/09060/Neurology_News__Having_Their_Say___Patient.16.aspx

Neurology Now Magazine:
December/January 2013 – Volume 9 – Issue 6 – p 14

Neurology News: Having Their Say: Patient Bloggers

“While your doctors can give you information and guidance about your condition, they’re not always the best source for practical advice. Patient bloggers offer that in spades as they chronicle their own journey with neurologic disease—sometimes funny, sometimes painful, but above all else, familiar. We tried to find blogs that are well-written, honest, and responsible in the way they handle medical information.”

Neurology Now is sponsored by the American Academy of Neurology and the American Brain Foundation. Free for subscribers, information is provided about various neurological problems in their publications. Included in each of their issues are also stories written about individuals—both well-known and unknown—who are dealing with a disorder/disease successfully. Here is a link to check it out http://patients.aan.com/index.cfm?axon=redirect&&path=/go/neurologynow  .

Also check out my 57 articles within this blog at the bottom of this blog page, as well as my website that contains much info about multiple sclerosis www.DebbieMS.com .

Best-

Debbie
Managing MS, Straight Talk…

Kristie Salerno Kent’s New Memoir “Dreams”

“My Journey with Multiple Sclerosis”

December 10, 2013

Kristie Salerno Kent is a singer, songwriter, producer, wife and mom. At the prime of her life, she is gorgeous, successful and now an author of a book. To look at her or listen to her, you would say she is lucky. But she will tell you that at one time in her life she didn’t feel lucky. Kristie has MS.

In her new memoir, “Dreams: My Journey with Multiple Sclerosis”, Kristie travels full circle as she talks about her dreams before her MS began, how her life and dreams became disrupted with her MS diagnosis/progression, and how she overcame the disruption through her music to once again dream and fulfill her life. Kristie feels blessed.

As Kristie openly tells her story, she takes us through her steps of the grieving process that one goes through when diagnosed with a chronic illness: denial, depression, anger and finally acceptance. Within the context of own experience, she specifically incorporates details of the challenges one faces with MS—the invisible, unpredictable and interfering symptoms—that create confusion, limitations and fear since there is no cure. Am I imagining this? What should I do? Where should I go? Who shall I tell and what do I say? How can I make this better?

She experiences the other severe implications of MS like fatigue and heat, and how they significantly impact even the smallest tasks. How can you explain these things to someone and help them understand the disturbances they cause when on the outside “you look so good?”  Kristie will tell you about this.

As the years go on in her life, she also tells about the adjustments, changes and choices she made to move forward in her life while never losing hope. Kristie writes in a fashion that is engrossing, easy to understand, and inspiring. One main message in “Dreams” is hope. Hope for herself. Her hope to help others understand the complications of living with MS. And hope that despite having MS, one can continue to pursue dreams.

When Kristie overcame her denial and depression, she wrote and produced her first album, “Believe.” She wants others to believe in themselves to fulfill their dreams despite difficult challenges that life can cause them. Kristie also produced an award-winning documentary, “The Show Must Go On,” to explain the symptoms of MS (http://www.youtube.com/watch?v=6oraM8IF2Gc). Now a mom of two small children, Kristie is a paid spokesperson for Acorda Therapeutics and travels across the U.S. to advocate for people living with MS.

The holiday season is meaningful. Starting with Thanksgiving, it is a time to be thankful for what you have and can do. Christmas and its sister holidays are a time of peace, joy, love and giving. With the New Year comes hope, new dreams, and reflection.

So if you want to read a book that packages all those things together, read Kristie Salerno Kent’s “Dreams: My Journey with Multiple Sclerosis,” available through a free (yes—free!!) download at www.DreamsTheEBook.com.

You will learn, relate, and walk away feeling inspired. I certainly did! And tell your family and friends about it, too. The more people both with and without MS understand this neurological disorder, the better off we will all be. 🙂

www.DebbieMS.com

Are Cognitive Problems Blamed Too Much on MS?

“What to Know—What to Do”

June 4, 2013

MS has many misconceptions associated with it, and cognitive impairment may be one of them. Lately, it seems that I read and hear more and more about how MS is the cause for memory issues that MSers experience–it is gaining a reputation for brain dysfunctioning. And along with the increased reputation comes the increased fear.

Although MS can cause cognitive issues, it is important to know that they are NOT the most typical symptoms of MS. 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).

What are these impairments? Things such as:

• Long-term concentration; inattention; distraction
• Forgetfulness
• Planning or problem solving difficulties
• Loss in thought processes; word finding
• Not thinking quickly or clearly; “brain fog”

BUT, these types of difficulties can also be the result of other factors such as age, hormones, menopause, overload, stress, drugs, fatigue, depression and lack of sleep. For example, up to two-thirds of women report forgetfulness and other mental disturbances during hormonal shifts of menopause! So, maybe that 40-50% estimate is really lower in reality.

There is something called neuropsychological testing, and more people in the MS community are talking about them. These tests were designed to measure cognitive difficulties. However, unlike some other areas of measurement, with these tests 1) there is no single test that measures everything that the brain does, and 2) there are wide variations in how/what types of tests are done and their conclusions. Furthermore, the testing can be strenuous and expensive.

In the end, does knowing the test details make much difference in one’s life? Doesn’t it make more sense to learn about these cognitive difficulties and what can be one done to overcome them?

What to Do and Why

Exercise your brain. Practice brain games, crossword puzzles, and memory exercises that stress verbal skills.

Enrich your diet with plenty of omega-3 fats, low-glycemic index carbohydrates (e.g., whole grains) and antioxidants. Walnuts and fish high in omega-3 fatty acids (including sardines and salmon) fight artery-damaging inflammation. Antioxidants raise acetylcholine, which is an essential neurotransmitter for memory. Berries, especially blueberries, are loaded with anthocyanins – potent antioxidants that protect cells, including those in the brain. Blueberries may also have the power to create new pathways for connection in the brain.

Eat several smaller meals throughout the day. Eating small meals prevents dips in blood glucose levels, and glucose is the primary energy source for the brain.

Take walks daily and do stretching exercises. Increased cardio can make your brain actually grow, with more white matter and more neuron connections.

Do stretching/relaxation exercises and meditation to reduce anxiety and stress. Stress causes the body to release cortisol. Cortisol—the body’s stress hormone– has been found to shrink the memory/learning centers in the brain, which results in impaired memory.

Make sure your body is getting enough iron. Iron helps the neurotransmitters essential to memory function properly.

Make sure you are getting enough sleep. Anyone who’s ever stayed up all night recognizes that next-day brain fuzziness, when it seems like nothing really registers or is available for recall later. That is what’s happening. Different parts of the brain are responsible for creating different types of memories – a face, a name, or just the recollection that you met someone. Sleep is also needed to make long-term memories last.

Focus on one task at a time to keep a recollection of each one. When you do multiple tasks, the brain switches processing to another region that retains fewer details. For example, listening to the news while reading something will impair your ability to recall either later.

Check your cholesterol. The plaque buildup can block the blood vessels in your brain, deprive it of valuable nutrients, and cue memory problems.

Keep thin or lose weight. The brains of obese people work harder than those of normal weight people to achieve the same results, according to researchers at Carnegie Mellon University. High blood pressure and inflammation—both of which strike obese people hard–irritate the brain’s communication networks, making it more difficult for the brain to receive messages.

Many prescription drugs can affect your memory, and the older you are, the longer drugs stay in your system. Drugs that can cause memory lapses include antidepressants, anti-anxiety drugs, beta-blockers, sleeping pills, painkillers, antihistamines, and statins.

Easy Memory Tricks

1. Repeat yourself. To help get a routine activity lodged in your brain, say it out loud as you do it. “I’m getting the stamps” – fends off distraction as you go to get them. You may sound crazy, but rehearsal is one of the best tricks for memory. Memory experts also advise that you repeat a person’s name as you are introduced.

2. Bite off bigger pieces. Since your brain can process only so much information at a time, try chunking bits together. By repeating a phone number as “thirty-eight, twenty-seven” instead of “3, 8, 2, 7,” you only have to remember two numbers, not four.

3. Give words more meaning. When you’re introduced – let’s say to Elton – connect the name to someone (“Elton John”), a place, etc. Or you can use rhymes—“Dennis plays tennis.”

4. Create unlikely connections. For example, switching a watch to the other wrist when you need to remember something. The oddity of not finding the watch where it should be triggers recall.

5. Practice paying attention. What was your neighbor wearing this morning? Even if you’ll never need the information, forcing yourself to observe and recall the details of your day sharpens your memory.

6. Do something mentally challenging. Working a crossword puzzle, or learning an instrument or foreign language creates fresh connections in the brain. It can actually generate new cells in the brain’s hippocampus (i.e. the brain’s learning/memory center). Those new cells build cognitive reserves that are important for creating new memories and may protect against memory loss – even dementia – later in life. A timed game like Boggle or Simon will force you to pay attention, work quickly, and think flexibly.

In summary, if a MSer is experiencing some type of cognitive problem, it may be prudent to initially think through the possible causes and try commonsense solutions to improve it.
www.DebbieMS.com
Author/MS Counselor/Living with MS

Fatigue & MS

“What it is—What to do”

“People look at me and just cannot understand why I get so tired.” (MSer comment, March 2011) This is a quotation I used in a chapter about fatigue in my book, Managing MS: Straight Talk….”

During a brief conversation with my sister last night, she remarked that she had no energy, she couldn’t think clearly, and all she wanted to do was lie down because she felt so exhausted. She has a virus. I got it—I knew exactly how she felt.

I often describe MS fatigue to people that it is like having a cold or virus—that you feel so exhausted all you want to do is lie down. Out of all the symptoms I and others have experienced with MS over all these years, I truly believe this is the one symptom that is the most difficult one for everyone involved to understand and know what to do about it.

But fatigue is extremely difficult for a non-MSer to understand because you can’t always see it—there is no stuffed up nose, swollen eyes, or sneezing. Or, someone may say “you look tired, maybe you should take a nap.” Okay, a nap may help, but fatigue isn’t only due to being sleepy.

It doesn’t matter if the MS case is mild or advanced. It doesn’t matter if one had a good night sleep or if the MS is not currently active. Fatigue is almost always present with MS, 24/7. Why? Fatigue exists because it is caused by MS–a disease, a chronic illness–and it causes other symptoms such is walking problems to intensify.

Fatigue is the hallmark symptom of MS. It is a universal complaint by 80–90% of MS patients. And it is finally being recognized as a serious obstacle for employment by the Social Security Administration when applying for disability benefits.

• A MSer will get fatigued easily, whether other symptoms are present or not. Simple activities like making dinner or talking on the phone too long can be exhausting. The slightest thing can make it worse, such as not eating, drinking enough fluids, or being overheated.

• Fatigue is compounding and escalates quickly if MS becomes active due to a relapse, or the amount of disability has increased over time. For example, sleep disturbances due to bladder problems at night, or extra effort required to walk because of spasticity or other gait problems, will impact fatigue significantly. Energy is reduced, weakness increases. This causes stress, frustration, and depression that will then lead to even greater fatigue.

• Fatigue is often caused by medications taken for other MS symptoms.

Often we can combat fatigue by pacing our activities, taking frequent rests, or letting others do things for us. Yesterday I came across an article entitled What You Can Do About Fatigue From MS, and is worth a read. It is from a blog I subscribe to called Stu’s Views & M.S. News; the source of this article was WebMD. Here’s the link http://bit.ly/Wrk8M9 .

There ARE many ways we can help to manage fatigue, and even if some do not work, other things may. At least we can try and keep on hoping.

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

Managing MS: Straight Talk…

“Why Read This Book?”

There are many books about multiple sclerosis. If you want or need to read something about this neurological disorder, I’m going to explain why Managing MS: Straight Talk From a 31-Year Survivor is THE book you should read.

I will give you my pitch that my book is unique because of its presentation, content, creditability and tone:

• MS is complicated to understand. I make it easy to understand using a “what to know—what to do” format for a wide array of subjects like symptoms, treatments, interpersonal relationships…

• It’s short, inspiring, and interesting. People who have read it so far are amazed at what they learned in the short span of only several hours it takes it read. Wonderful reviews have been received from a wide range of readers.

• People are afraid of MS. Even the sound of “multiple sclerosis” is chilling. A main objective when I wrote the book was to help reduce the fear of living with MS, no matter if you have it or not. I felt it crucial to use a tone, words and expressions that would enable the reader to feel comfortable. I clear up misconceptions about this disorder.

Managing MS is accurate. Information and resources contained within have been endorsed by a variety of health care professionals, including one of the best neurologists (MS Specialist) in Phoenix, AZ.

• I am a peer. I lived the major part of my adult life with MS and survived it. This book is not a story about me, although I do share personal experiences to explain things. It is a guidebook incorporating my experiences with thousands of people I interacted with over 25 years. I have been and continue to be a volunteer, educator, counselor, and researcher in the MS community.

• It’s affordable/ available in all formats. Even if you pick up a few tips, it’s worth it.

• There is information that is useful to those living with other chronic diseases, such as how to handle fatigue, doctors, or interpersonal relationships.

I invite you to visit my website www.DebbieMS.com  that gives much information about me, my credentials and Managing MS: Straight Talk From a 31-Year Survivor. It also includes self-help videos, weekly articles I write, other activities I engage in to help persons dealing with MS, and an email address where questions can be submitted to me. Here are some quick links within my site:

• A profile The National Multiple Sclerosis Society posted on their website this summer. http://nationalmssociety.org/online-community/personal-stories/debbie-petrina/index.aspx

• A book trailer I recently created myself http://www.youtube.com/watch?v=4X0YErTxXbM&feature=youtu.be

• Orange Awareness Campaign for MS I created and launched (this is fun!) http://www.youtube.com/watch?v=JtMjKXP4dQU&feature=plcp

• A “Meet-the-Author” video at the bottom of the Home page on my website that discusses many aspects of MS, not just the book.  Great for “newbies.” www.DebbieMS.com

I want to emphasize that this book is about managing MS. There are many things a MSer can do to manage and control (yes, control!) both the symptoms and the course of their disease, both with and without medications. But this all takes knowledge, support, work, dedication and discipline. There is no magic pill or injection that will manage, fix or control MS. Not yet.

So if you are looking for a book about multiple sclerosis that is an autobiography, full of specific medical terminology, or containing the latest breakthrough drug or study, this is not that type of book.

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

Serious Effects of Getting Sick for MS/Autoimmune Disease Patients

The season of colds, flus and viruses is upon us. For normal people, getting one of these is no fun, but they soon get well and life goes on. For those of us with multiple sclerosis, an autoimmune disease, these sicknesses are detrimental to our overall health.
What to Know

1. When a person with an autoimmune disease gets sick, those fighter T-cells from the immune system get to work to combat the invading bacteria or virus. Unfortunately those cells goof up on the job and attack the body instead of the real villains. For multiple sclerosis, the central nervous system is attacked; for patients of rheumatoid arthritis, the joints are attacked; for lupus, the body’s organs are attacked, and so forth.

For a person with MS, the attack means that inflammation in the nervous system will likely occur, causing present MS symptoms to worsen and perhaps causing new symptoms to appear. The probability of a relapse is high, often followed by residual damage to one or more areas of the CNS.

To make matters worse, because the immune system isn’t working properly, recovery time is extended. A normal person may recover from a cold in five days; recovery for a person with MS or an autoimmune disease may take up to ten days or even longer.

2. Drugs taken to treat MS relapses have a dual purpose: to suppress the immune system to avoid releasing the T-fighter cells and to reduce the inflammation that an attack ultimately causes. During an MS relapse, steroids (Solu-medrol, predisone…) are usually prescribed in high doses to quickly remedy these two problems. The downside to these benefits is that the person is left highly vulnerable to getting sick or infected because the immune system is suppressed.

Another example is an MS treatment available called Acthar. It is an option to treat MS relapses and inflammation differently from steroids; however, like steroids it suppresses the immune system and increases the chances of getting infections and illnesses.

3. Depression, anxiety and fatigue are common symptoms of MS and other diseases/chronic illnesses. Sickness and infections exacerbate these symptoms. As the winter season drags on, these symptoms are often affected even more. A rolling stone gathers moss…

What to Do

1. Take all measures to keep your resistance high and your exposure to infections, colds and viruses low:

• Make sure to get a good night sleep, eat properly, and drink plenty of water to keep the body healthy.  Take vitamins, especially the B’s to boost the immune system.

• Constantly wash hands, don’t share food or drinks, and never put fingers in the mouth, nose or eyes. Take hand sanitizer with you and use it often, such as in a bathroom, after reading magazines or shaking hands with someone. Avoid rubbing your eyes, sharing food, or putting things in your mouth, like a pen. Take your own bottle of water in lieu of drinking from a water fountain.

• Stay away from people with colds or viruses. If someone who wants to get together with you is sick, suggest having a phone chat instead. When it is someone you live or work with, keep your distance from them as much as possible. Put kisses and hugs on hold, and then double up on them when the sickness passes. Teach kids to wash their hands, use the chicken-wing when sneezing, and all of the things listed above.

2. With regard to flu shots, it should be a personal decision regardless of what doctors or researchers advise about shots. Many people choose to use commonsense methods to avoid the flu and don’t want the risk of any side effects from annually developed vaccines on what the ‘new’ strains are expected to be.

3. Check the inserts that come with your medications to learn whether they can effect the immune system.

4. If you have an infection (e.g. sinus), call your doctor for an antibiotic.

5. If you have a virus, try to hang in there and tolerate the MS symptoms until the sickness is over (even if it is causing a relapse/flare-up).

• Again, recovery from a sickness for a MSer is usually longer because of the immune system dysfunction. The waiting can be a real burden on our patience, adding stress. Getting on steroids while ill can cause a longer recovery period while leaving you exposed to getting something else.

• Take extra steps to rest, take care yourself, build the resistance up, and try to recover on your own.

• If you can’t hang in there, consult with your doctor about a course of action. While colds, flus and viruses cannot be treated with antibiotics, the symptoms of these sicknesses can be treated for comfort (example: a decongestant or cough suppressant).

6. If the cold/sickness is over and the MS symptoms stay intensified afterwards, then call the doctor to discuss steroids because at this point the MS is probably active.

7. Remember that heat has an adverse effect on many people living with MS. Having a fever that frequently accompanies a virus or flu can significantly intensify MS symptoms. Treat a fever with aspirin or ibuprofen, cool packs, and plenty of water/ice chips to reduce some of the negative impact the sickness is having on your symptoms.

8. Fight the winter doldrums by finding ways to overcome depression and anxiety. Rest often to help with fatigue.

While those suffering from MS or another chronic illness do not have control all of the time, there are things that can be done to have control some of the time. This is one of those times we can help take control.

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