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” http://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

“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

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

Positivity: Essential For Our Health & Happiness

“How to Embrace It”

July 16, 2013

Having a positive perspective in life is critical to both our health and happiness.

Earlier this year I came across an article by Renie Cavallari, CEO and Chief inspirational officer of Aspire Marketing and Training, and saved it. Recently I went through a negative spell, and re-reading this article helped me re-focus and turn my attitude positive again. Since her article is so good, I decided to take direct excerpts from it to share with others:

“Nothing positive comes from negativity. How you choose to see the world is how you experience it. You feel the way you think and your thoughts reflect your actions.

As a human being, you can control how you feel. You can choose to take any situation and consider it from a positive perspective. This is not to say that when you feel bad or sad, you should deny your feelings. What you can do is decide how you will allow the people and events of your life to affect your world.

Things happen that are disappointing, upsetting or overwhelming. This is when you have to conscientiously change your perspective so you can get to a more productive mental space. You cannot change the events of your life. You can change how you experience them.

Here are a few tips:

• Ask yourself, “What is right or good about this situation?” Avoid the negative narrative and find what is helpful.

• When your energy is low, this is the first sign that you want to get some exercise. Exercise actually “turns on” our energy and has a way of giving our negative thoughts and feelings a place to release. Just take a walk, breathe in, pick up your pace and burn off the negative energy.

• Who you hang out with is who you become. Some people just give off negative energy; this is why we feel so exhausted around them. When disappointments happen, you want positive and supportive people in your world. Fire the naysayers. They are not helpful and only hold you back.

• Sometimes embracing the humor of a situation helps. Ask yourself, “What about this situation will be funny in a year? Or maybe five years?

• Move to solutions. Many times we think about what is wrong vs. what we can do next. If you stay in a place of a problem (what is wrong), you end up feeling negative and stuck.

When you start planning what you are going to do, you begin to feel empowered and in control; you start moving toward what you want. This forward momentum creates more positive energy and gets you where you want to go.

Your energy determines how you feel and experience your life. Positivity is the fuel for happiness.”

Thank you, Renie!

www.DebbieMS.com