Debbie Petrina walked into her doctor's office in 1980 with strange symptoms. She was only twenty-five years old and terrified of what to expect; it was not until four years later that she was finally diagnosed with multiple sclerosis. Since then, she has faced a battle in living with the disease; even so, she continues to live and enjoy her life. In this inspiring account, she shares her personal experiences with MS and how she deals with the disease's devastating effects. If you think you might have MS, have been diagnosed with MS, work with MS patients, or have a family member or friend dealing with the disease, Petrina offers help. You'll obtain knowledge and guidance for handling symptoms; deal with the effects of MS on your daily life; manage emotions, depression, and cognitive functions; and approach issues such as long-term disability. Debbie's commonsense approach to dealing with MS cuts through the mounds of information available today and packages it into a practical, easy-to-read resource. Take the fear out of diagnosis and learn how to effectively begin Managing MS.

Managing MS

Straight Talk from a Thirty-One-Year SurvivorBy Debbie Petrina

iUniverse, Inc.

Copyright © 2011 Debbie Petrina
All right reserved.
ISBN: 978-1-4620-7052-7

Contents

Foreward.............................................................ixPreface..............................................................xiAcknowledgments......................................................xiiiPart I: Who is Debbie, the Author?...................................1A Mouth and a Brain..................................................3My Story.............................................................5Information about My Background......................................10My Ten Commandments..................................................12Part II: What should you know?.......................................19Newly Diagnosed?.....................................................21Doctors/Hospitals....................................................24An Ongoing Grieving Process..........................................28MS Symptoms—Overview...........................................30The Heat Element.....................................................34Bad Days vs. Flare-ups...............................................36Treatments...........................................................41Part III: What can you do?...........................................47The Invisible Symptoms—"You look so Good!".....................49Fatigue—"Wipeout"..............................................51Vision Problems......................................................55Internal Plumbing—Part I Bladder...............................57Internal Plumbing—Part II Bowels...............................62Sexual Dysfunction...................................................67Spasticity, Ataxia, and Weakness.....................................69Let's Talk Walking Aids .............................................73Durable Medical Equipment............................................76Pain.................................................................80Pregnancy, Menses and Hormones.......................................87Emotions, Depression, Cognitive Functions............................91The Elephant in the Room—Suicide...............................94Long-Term Disability Insurance.......................................97Part IV: What else is Helpful to Know?...............................103How to Deal with People..............................................105How to Deal with a Person with MS....................................111"Positives" to having MS.............................................114Personal Choices.....................................................117Final Words of Inspiration...........................................121Resources............................................................123Bibliography.........................................................127

Chapter One

A Mouth and a Brain

(May 18, 2011)

In 1980, thirty-one years ago, I walked into a neurologist's office with weird things happening to me. Four years later, my diagnosis was confirmed.

I have a mouth and a brain. I have always said that I use them both to get what I need or want. Through the years as I became more disabled, I have used my mouth and my brain to figure out ways to manage my life and stay as independent as possible.

Today I went to Best Buy to get a wireless mouse for my notebook. I called the store first to make sure they had what I wanted and asked them to hold one for me at customer service. When I got there, I called them and explained that I had driven with hand controls since I don't walk and didn't have my wheelchair with me. Could someone bring it out to the car for me?—I had the exact amount in cash for payment.

The clerk explained it was store policy that employees were not allowed to leave the store. This was the first time that this had ever happened to me; when I had done this at other places I was always accommodated. Hmm—plan B. Okay, not to worry, I said. I will grab a Good Samaritan to get it for me. It was only $16 so I didn't have much to lose.

There are good people in the world. After eyeing a few passersby, I motioned to an older couple and explained my situation. They were happy to help. I graciously thanked them.

Mission accomplished.

Chapter Two

My Story

It wasn't always this easy, and I didn't always have this attitude. In 1980 I was twenty five, full of life, hopes and fun. Then the bomb fell.

I walked out of a sales presentation and noticed that when I got into my car my left shoe was missing. It was lying in the parking lot twenty feet away. Other strange things were happening to me prior to this incident, but this was the ultimate. I drove straight to the hospital in a little town in Pennsylvania called Altoona, and was told to go to a neurologist in Pittsburgh ASAP. I shook and cried during the whole two-hour trip.

Thirty-one years ago, there were no CAT scans, MRI's, or visual evoked response (VER) testing. VER testing is a diagnostic tool that measures if nerve impulses are normal. I was asked a series of questions, checked clinically in the office by walking and doing some other things, then admitted into the hospital for a myelogram. A myelogram is a test to look for problems in the spine, by taking X-rays of the spine after dye is injected into the spinal canal through a thin needle. I was told I had an infection in my spinal column and sent home.

I suffered two weeks of excruciating headaches from not being told to lie down for twenty-four hours after the myelogram. The neurologist (Dr. Pathetic) put me on a high dosage of prednisone, never bothering to mention that I could have insomnia as a side effect as well as many other side effects. He said I had an infection in my spinal cord and that it would slowly go away. There was nothing else to do. I slept an average of two hours a night, went back to work, and nearly became an alcoholic.

At that time, few people knew anything about MS. I brought it up to my family after reading an old encyclopedia, but everyone denied it. It was my nerves, they said. I was overworked and was too young to have anything wrong with me. There was no internet, little awareness, and scant literature on the subject. The only reason I knew about MS was because the next-door neighbor where I grew up had it.

I felt alone and terrified. My usual discipline, self-control, and logic were lost; anxiety and stress took over. I had trouble balancing, my left leg was weak and heavy, my left toes were cold; I couldn't warm them up after running hot water over them. I began writing these and other bizarre happenings down in a journal. The strange symptoms lasted ten months and then all mysteriously went away except for an itching sensation in my left forearm.

But MS stuck in the back of my mind because of something I had read in that old encyclopedia. I had the Babinski sign. The Babinski sign is a test the neurologist will perform in the office. The bottom of the foot is scraped and, in normal people, the big toe will involuntarily turn down. If it turns up, it is an indication that there is a neurological disorder. My toes had turned up. I also had the L'Hermitte's sign— another sign of a neurological dysfunction. This is when you lower you head so that your chin touches the chest, a tingling shock-like sensation zips down the back or body. The neurologist never responded to me when I asked about them. Again, he just said I had an infection in my spinal cord, and not to worry about it. I was too naïve and scared to press further.

Two months after I delivered my son in 1983, it all started again, but differently. I began wetting the bed. My balance and leg coordination were affected. I lost almost all the sight in my left eye. Deep down inside I knew I had MS but my life at the time was too complicated to go for a diagnosis. My husband had lost his job, and by year-end I had lost mine too. Both his parents had passed away. Then I started a new job. My son was now an active one-year old. During that one year, the intense stress from all these major life events was breaking down all my main body functions. It was time to do something.

So in 1984, four years after the initial onset of symptoms, I called a cousin who was a nurse and asked about a recommendation for a new neurologist. He diagnosed me immediately. I had the multiple symptoms in multiple parts of the nervous system. Now, the multiple occurrences, the presence of optic neuritis, and positive findings of a new visual evoked response test made his conclusion that I had MS. I was actually relieved! I finally had answer to my suspicions confirmed. I could go forward and figure out how to deal with this.

Unfortunately, at that time there still was very little awareness of MS. It was a gloom-and-doom picture of a person who eventually ended up twisted in a wheelchair. It's that "Jerry Lewis thing isn't it?" everyone asked. Family told me to get a second opinion.

Instead, I went to the local chapter of the National Multiple Sclerosis Society (NMSS) office. It was very small, but welcoming. They gave me some basic brochures about MS, the names of a couple of books that I later ordered through a bookstore, and a name and number of another young woman that had it (after getting her permission to be contacted.) Her name was Cathy.

* * *

Cathy was my saving grace. We were about the same age and both of us had a young child the same age. We clicked instantly, sharing stories and feelings. When I told her about my cold toes, she told me how she always had to wear a sock on her left foot. We were phone buddies for years. Relief was spelled "P-e-e-r".

Beyond my chats with Cathy, there was nobody to teach me the ropes. I was on my own. I read, I experimented, and then I got involved with the local chapter of the National MS Society and met more people with MS. I used my mouth, my brain, and as my great aunt used to say "used my intelligence."

Today in 2011, it's incredible how much information, awareness, assistance, research, medication, support and access there are avail- able to folks diagnosed with MS. Learning the ropes is easier for persons with MS today, but it still is a process one has to experience, be taught and learn. It's not the gloom and doom picture it used to be, but it's not the perky bowl of cherries that's often pictured either. It will take time and patience.

I am considered an advanced MSer and the so-called worst-case: the one in four or five who ended up in a wheelchair. However, the progress in all aspects of MS has been so tremendous in the past thirty years, I'm sure those getting diagnosed today will statistically have a better prognosis.

* * *

I was only twenty five. I am now fifty-six, married thirty-three years, have a twenty-eight year old son, and many stories to tell of my struggles and successes. I still drive, lead a productive life, and still weigh less than 130 pounds. People who look at me in my scooter tell me how good I look and ask what type of accident I had.

That's what this book is about—learning the ropes from someone who has MS. The countless things I learned over three decades and then how I managed. How I managed myself, my MS, my life. This book is my opinions, my trials and errors, my experiences, my judgments. There are no absolute rights or wrongs. What works for one, may or may not work for another—something that I will repeat many times throughout this book.

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.

You can, too! But first, there are a few things you should know about me—outlined in the next chapter— as you read this book.

Chapter Three

Information about My Background

Okay, so I started off by telling you my story. But before getting started, I want to tell you something about my background. The point is that what I learned and how I manage(d) are not only my personal experience of living with MS for thirty-one years; they also are a result of interactions with thousands of peers and persons associated with MS.

I have been a:

• Trained peer counselor by the National Multiple Sclerosis Society (NMSS). I counseled hundreds of other persons with MS for fifteen years for the society, and continued to counsel other peers confidentially through referrals from acquaintances and personal health-care personnel. • Monthly group leader for the NMSS for ten years. • Member of the chapter services committee for the (then) Allegheny District Chapter in Western Pennsylvania. • Frequent speaker to newly diagnosed groups; caregivers/ family groups; medical staff on behalf of the NMSS. • Constant researcher of MS news, publications.

I also earned my Bachelor of Science in Business Administration degree in 1976 from Duquesne University in Pittsburgh, Pennsylvania. My major was marketing and minor was statistics. I worked for two major banks for over ten years in finance, research, sales and management. These skills have been invaluable throughout the years as I researched, analyzed, and engaged myself with MS.

Now let's take a look at My Ten Commandments I follow in my life ...

Chapter Four

My Ten Commandments

There is no magic pill or shot you can take to make it all go away. It takes work, discipline, dedication, attitude, and the common sense to take care of yourself. This is a lifetime illness. Until there is a cure for multiple sclerosis the goal is to stay healthy, prevent new attacks, and prevent disability.

How do I do it?

1. Rest/sleep.

I make the time to rest at various intervals throughout the day, especially since I wake up once or twice at night to pee and don't always fall back to sleep right away. I take an afternoon nap to lie flat, and resort to the recliner to elevate my feet to help my feet edema (swelling). I make sure I sleep; I make myself sleep. I have used sleeping pills for over twenty-five years, and my personal rule is that if I have two consecutive nights of insomnia or poor sleep, I take a sleeping pill on the third night. Good sleep and rests are a must. They rejuvenate and heal the body, reduce anxiety, fatigue, and depression and keep one's resistance up.

2. Eat properly.

I follow no special diet, eat what's good for me and avoid what's not. Truthfully, I don't eat a lot. Balance, variety, and quantity are key. Lots of fresh fruits and veggies (low in calories, good fiber). A mix of fish, poultry, pork, beef, pasta every week (balance of protein, omega 3, carbs ...). Small meals several times a day (keeps the stomach from expanding). Very limited sauces, gravies, butter (less calories); the plainer, the better (lots of seasoning gives me gas and/or causes me to retain water). Cook, broil and grill at home—I eat out only occasionally. I always drink water, except for a mug of coffee in the morning or green tea later in the day. No dairy products (they cause bloating and nausea for me, and are binding). Instead, I take calcium, and acidophilus for "good" bacteria. I don't deprive myself of potato chips or goodies—I just put a strict limit on them. No fast food unless I'm desperate. Liquor? I've had a cocktail or wine many evenings for years and will not give that up! I enjoy it and deserve it. My doctor tells me to go for it, as long as it's in moderation.

3. Keep the weight down.

Obviously we all know it's healthier, but equally important: it puts less strain on the body which is challenged by fatigue 24/7 and makes it easier to exercise. By keeping my body weight under 130 pounds, others can pick me up when necessary and I can maneuver myself easier. When I quit smoking twenty-five years ago, I gained fifteen pounds. I bought a book that was popular at that time called The Rotation Diet that taught me how to eat right and how to increase my metabolism while I lost weight. I lost those fifteen pounds in three weeks, and never put it back on. I learned that a slab of butter is 100 calories, as is a slice of American cheese or only one tablespoon of salad dressing. It was hard, and it took a lot of discipline, but it was worth it.

4. Exercise all day, everyday.

This is one of the most important things a person with MS can do. I have been a swimmer all of my life, and when I developed MS, swimming became my #1 form of exercise. Three times a week, I have religiously gone in the pool to stretch, exercise, and practice things I had/have trouble doing on land (like standing, walking, and balancing). The water is cool and safe. It helps with spasticity, circulation, vascular, respiratory and digestive systems; it also burns calories and is a great de-stressor. On days when I'm not in the pool, I get on the floor and do a variety of exercises I learned over the years from my dancing days, physical therapy, TV/tapes, etc. I am still able to lie on my back and pull my knees up to my chest and rock from side to side, which feels "painfully good" for my severe back pain from the spasticity. My goal is a 45-minute workout, but if I'm too fatigued, I'll give myself a vacation day from it. Throughout the day, I've learned to keep bending and stretching by trying continuously to do some light housekeeping. Again, I do what I can do, but when my body starts screaming "enough!" I quit, lie down and rest. If there is a period of time I can't do these things because of a relapse, for instance, my physical therapist has taught me gentle exercises I can do in my wheelchair for each part of my body (such as head/ shoulder rolls, arm extensions ...) Minimally, if I have no energy at all, my husband will stretch my legs and back for me, which helps my spasticity tremendously.

5. Don't get sick or physically hurt.

MS is an autoimmune disease. When a MSer gets sick or hurt, those fighter T-cells from our immune system get to work, but unfortunately goof up on the job and attack our nervous system instead of the real villains. That means inflammation in the nervous system will likely occur, causing present MS symptoms to worsen and possibly cause new symptoms to appear. Because the immune system isn't working properly, recovery time is lengthened for everything. So I constantly wash my hands, don't share food or drinks, stay away from people with colds or viruses, keep my resistance up by doing #1 and #2 above, never put my fingers in my mouth, nose or eyes, and avoid situations that could cause falls. With regard to flu shots, I don't get them. That is my own personal opinion. I choose to use commonsense methods to avoid the flu regardless of what doctors or researchers advise about shots. I've had a great record of not getting the flu all these years and don't want the risk of any side effects from annually developed vaccines on what the "new" strains are expected to be. In the event I would be in a situation that would require a tetanus shot, for example, I would consult with both my internist and neurologist about it.

(Continues...)

Excerpted from Managing MSby Debbie Petrina Copyright © 2011 by Debbie Petrina. Excerpted by permission of iUniverse, Inc.. All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.
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