The Solution to Controlling My Spasticity
	Sharing my Story.
	Coping With the Invisible Symptoms of M S
	April Fools Day
	It's Not the End, It's the Beginning

THE BACLOFEN PUMP
The Solution to Controlling My Spasticity

My Story
By: M. Kendall

Once it was officially determined that I was an ideal candidate for the Baclofen pump, the next step was to find a doctor that had experience with that type of operation.  My neurologist made this process easier by referring me to a neuro-surgeon who had performed the implantation of this pump multiple times.

My first appointment with the neuro-surgeon was primarily spent educating me on the advantages and disadvantage associated with having the Baclofen Pump System implantation.  Prior to my visit, however, I had already made the decision that I was going to get this pump no matter what, regardless of the potential side-effects.  In my mind, this treatment option was my only hope in alleviating my pain and discomfort!  Before leaving the doctor’s office, I made sure I was on the surgery schedule.

My surgery took place about a month after my initial visit with the surgeon - primarily due to coordinating doctor schedules that would be involved with my case.  The day before my scheduled surgery, I had to go into day surgery to have a trial of the medication therapy to test the potential effectiveness.  During this medication trial, they injected Baclofen into my spinal canal using a needle and the treatment team evaluated the effectiveness of the medication.  Throughout the trial, a physical therapist would periodically come in and move my legs to check my spasticity level.  In all, the test trial lasted approximately six hours and by the end, I was able to bend my knees and ankles easily and had noticeably less pain and joint stiffness.  Just the results I was hoping for!  Interestingly enough, within an hour of the Baclofen wearing off, my numbness returned.

On the following day, June 29th, 2006, my life took a positive turn.  I had my Baclofen pump implantation.  The surgery lasted about one hour and thirty minutes without any complications.   

It has now been over seven months since the implantation of my Baclofen pump and I am happy to report that I have had no complications since the surgery.  I go into the doctor’s office every 3-6 weeks for medication dosage adjustments depending on the weather.  I also have my pump checked and refilled about every three months at the doctor’s office.  So far the process has gone very smoothly, and I have never looked back at my decision to have this pump.  The constant dosing of Baclofen has definitely decreased my episodes of spasticity, and thus has allowed me to slowly but surely build up my strength.  My goal is to build up enough strength that I will one day soon be able to again put my walker back in the closet. 

Sharing my Story…

Being diagnosed with MS was the most difficult challenge I have ever had to face. I was only 21, in school going for my nursing degree, when I started getting a numbing sensation in my legs and my balance was off. When I went to my doctor he thought it was a slipped disc in my back, but just to be safe he sent me to a neurologist. He also thought it was a slipped disc but made me an appointment to have an MRI. By this time, I was using a cane and had to quit my job and school.

I was diagnosed in February after 6 months of tests, spinal taps, vision tests, doctors, nurses, neurologists; you name it I had it done. To be honest, I was a bit relieved to actually find out what was wrong with me and to know that I could finally go on with my life. It has been really tough but it has also made me a stronger person. Even though I am not in a wheelchair, I am limited to the things that I can do. I can't stand on my legs for more than a few hours without getting exhausted and I get tired easily, so when I had to change my life plans I was very disappointed.

I am now back in school and want to start my own business in the graphic design industry. I have recently started reading more and I am getting into the more spiritual side of my life. I try not to think negative about my illness, but think of the positive side. I volunteer at the MS Society and want to help people like myself. It's been a year since my diagnosis. I try not to think of my future much or think of the things I can't do, but think of the things that I can, I live by the day. I have learned to appreciate life a lot more and the people that I love. So keep your chin up, if I can get through this so can you.

Coping With the Invisible Symptoms of MS
By Judy Greve, LPN OTN Specialty Services Field Training Specialist

Do you ever wake up and think, "I just can't get out of bed!"? You say, "I am thankful that breathing is automatic, because I don't even have the energy for that!". It's not that you wouldn't want to jump up and get your day rolling, but that you CAN'T get out of bed because your body will not cooperate in the energy department!

For most, if not all MS sufferers, overwhelming fatigue can be the most difficult symptom to deal with. It is the "invisible" symptom, the effects of the disease that no one can quantify on a lab test or see on a brain scan. It is not the same as the fatigue that one experiences from working long hours on a project or not getting enough sleep in a night. Rather, it is the absolute debilitating feeling of being totally drained. An exhaustion that seems to have a life of it's own!

The frustrating part about this "invisible" exhaustion is that your "outside" doesn't match your "inside". Have you ever dragged yourself out of bed in defiance of the utter exhaustion only to have a friend say, "but you look so good!". It makes you feel as though others doubt the validity of your fatigue because you don't "look" tired and worn out! The frustration builds when well meaning encouragers advise you to exercise in order to feel better. Now, you battle feelings of personal failure as you consider the difficulty you have just getting through a day without adding high energy aerobics to your daily requirements!

With competency and the striving for excellence an ever present cultural force in the 21st century, we all feel the pressure to push ourselves a little harder. Admitting that one's body may need to rest seems totally out of fashion. But for a person living with MS, the reality is "If YOU don't slow down, your body will!" Here are some simple ways that a person living with MS can cope with the fatigue associated with the disease and optimize their daily life experience.

• Get plenty of sleep. Interrupted sleep or not enough sleep can increase fatigue. Make sure where you sleep is quiet and comfortable. Develop a regular pattern of going to bed and getting up around the same time every day, and avoid drinking coffee close to bedtime.
• Pay attention to the kind of food you eat. Eat regularly scheduled meals that will optimize your energy level. Avoid large amounts of concentrated sugar carbohydrates and foods that are high in fat!
• Schedule the more energy consuming tasks at a time in your day that you have the most energy. Prioritize and stay flexible in your scheduling.
• Simplify your work area to conserve energy. Those things you use most often and continually should be placed close to you and all in one place. Organize your work supplies according to your work habit and workflow, not according to a picture in a decorating magazine.
• Participate in a Physical Therapy program to strengthen weakened muscles and maintain muscle tone and flexibility.
• Learn to listen to your body signals of growing fatigue and REST when your body needs it!

Knowing the boundaries that MS places on your life frees you up to live productively and with purpose. Only you can understand the limitations that MS places on your life. Recognizing that fatigue is part of the landscape when living with MS is not giving into the disease, rather it helps you focus your life priorities and optimizes the energy you will have to accomplish them.

April Fools Day

On April 1, 2000, I woke up and wished someone was playing a joke on me. I looked around and my vision was suddenly blurred and cloudy in one eye. I never would have guessed that I was experiencing optic neuritis, a symptom of Multiple Sclerosis.

It took nearly one month to be diagnosed. First, I went to an optometrist who then referred me to an opthamologist. After some testing, the opthamologist said he did not want to scare me, but had an idea of what was causing my blurred vision. He requested an MRI which confirmed his speculation: I had plaque on my brain caused my MS. He then sent me to an opthamologist neurologist.

Most of the information I found about MS, I discovered on my own. I contacted the National Multiple Sclerosis Society and read lots of books and literature. I was not shy about my condition. I told all my family, friends and neighbors and sought as much information and advice I could find. It was recommended that I seek a second opinion, which is when I went to UT Southwestern Medical Center and visited the "MS Floor." I met with a neurologist I really felt comfortable with. For me, the most difficult part of having MS is that nobody can tell me exactly what to expect. It is sometimes referred to as the "Mystery Disease" because it affects different people in different ways. When I asked my neurologist what is the worst I could expect, she told me I could go outside and be hit by a car. In other words, there is no use in worrying.

I decided the only thing to do was to think positively. I have an uncle who has had MS for many years and he is doing well, which is an inspiration for me. At least I was relieved to learn I did not have a brain tumor, which was an original concern. My neurologist told me that I was "behind the eight-ball" and seemed to have caught the disease early. I still had options. She then advised me about possible drugs for treating MS and said that by taking Avonex® for the next five years I would be better off than someone with MS who did no treatment at all. I was the ultimate decision-maker on my treatment. Although denial was my first reaction and I told myself I did not need medication to overcome this, my blurry eye was a constant reminder.

When I contacted the MS Society and asked to speak with a volunteer, I felt like I was put in touch with an angel. The woman I spoke with had similar symptoms, was so helpful and even told me that she takes Avonex®. She told me that I am fortunate to be diagnosed at this time, when such medications exist. I began taking Avonex by weekly injection. It did not improve my eye, only time helped that. My vision returned to normal after about three months. My husband usually administers the injection and my two children often help with the band-aid afterwards.

Now, I feel that I am taking control of my MS. I'm doing the best I can with the options given and that's all I can do. I continue to try to stay positive. I pray that I will be able to be there for my children, my son who is 8 and my daughter who is 5. Fortunately, I feel good and am not experiencing any symptoms. In fact, some days I don't even think about it!

It's Not the End, It's the Beginning

One and a half years ago, I was diagnosed with Multiple Sclerosis. This past year, my 13-year-old son had CMV, which is a bad case of pneumonia that causes immune deficiency and damaged 30 percent of his small airways. Although it has been a challenging year, I like to say that it's what you make of it that matters.

Although I was diagnosed with MS fairly recently, I've had symptoms for more than 15 years. When I first got married, my left leg was paralyzed for four months. I've had problems with my arms and my esophagus over the years. For so long, no one put all the signs together. When I was in a car accident three years ago, I had an MRI and was finally diagnosed with MS.

I had heard of MS and knew a few people who had it, but I didn't know much more. I decided that I would do whatever I could to take control. The MS wouldn't control me; I'd control it. I actually felt a sense of relief to finally know what was physically happening to me. It was so frustrating when the doctors could not find what was wrong. I felt a sense of validation for all the strange symptoms I had experienced over the years that just didn't seem to add up.

My biggest support has been my husband. He has been phenomenally strong. My son has demonstrated great strength, as well. We are originally from New Jersey, but have been living in Dallas for many years. Even though our families are not near us, but the three of us are very self-resilient. After the past year, I joke around and say that we survived puberty and menopause in one year and didn't kill each other ... that's pretty good!

My main job is being a mother and it is one that I love. At times, I pursue my jewelry-making business, but haven't done much lately. I might go back to it someday. I also volunteer for the Lung Association because of my son. He was out of school for the past year because of the CMV, but is back in the classroom now. This summer, he was given a wish from Starlight Foundation and we went to Disneyworld. It was a wonderful experience for us and gave us both some confidence back.

Lately, my symptoms include balance problems, double vision and headaches. I use a cane for walking to keep myself steady. On the Disneyworld trip, I used a wheelchair to get around, but I prefer walking whenever possible. Although it's not easy to do during a Texas summer, I try to stay out of the heat as much as possible. To relieve my symptoms, I have tried different medications. I have a terrible reaction to steroids, but will be taking chemotherapy soon. I feel gratified that there is something out there that I can try.

I feel that now is a better time to have MS than ever before. So many researchers are looking for cures for MS and other diseases. I believe with all the work being done in the area of nerves, there will be a discovery someday that makes MS a lot better to live with. My goal is to grow old and gray and live to be an old lady with lots of grandchildren.

For now, I just try to live my life for the moment. This isn't what my family and I expected, but it's a whole lot better than it could be. When I tell people I have MS, I don't want them to feel sorry for me. I'm the same person. I just go on with my life or modify what I'm doing if necessary. Most importantly, I try to find humor wherever I can, and live with knowing that it's not over for me . . . it's just the beginning.

Marci Shonborn