Multiple Sclerosis and Personal Relationships

Relationships take a great amount of effort, communication, honesty, and intimacy. Regardless of outside barriers, a relationship can either be exponentially wonderful or extremely difficult. When I was first diagnosed with MS, I was with a boy I thought I would marry. Fast forward to less than six months after the diagnosis, and our relationship had dwindled to nothing. His last words to me were, "When will it be my turn to be taken care of?"

I never saw him again.

It was in that moment I realized that not only did I bring myself into a relationship, but I brought MS, as well. It's difficult to want to desperately hide potentially damning information about myself, but the truth of the matter is that, although MS does not have me, I have MS. I have the ups and downs caused by MS. I have limitations triggered from MS. I still have questions, and I can only assume that who I am with will have questions, as well.

I've always told myself that knowledge is power. In relationships, primarily, I've discovered that knowledge is powerful beyond measure. Finding an individual who can not only understand but accept the fact that I have a potentially debilitating disease that affects numerous facets of my life will bring more strength than even I can understand.

Through strength, however, comes humility. I have to be willing to let this individual in so he can begin the process of understanding and accepting. In the process, however, I do not feel that I should be reminded daily of the limitations or barriers I face.

With this said, where is line drawn in the sand?

Below, you'll find valuable information on MS and relationships. Though some of the information may be hard to swallow, the truth of the matter is that some or all of these issues may or may not exist. Each individual is different therefore each case of MS is different, as well:

What does “intimacy” mean? For many people, the term is simply another word for sex—in other words, being intimate with another person means having a sexual relationship. A satisfying, intimate relationship, however, rests on a much broader foundation—of trust, open and honest communication, shared goals and expectations, and mutual respect and concern. So intimacy refers to all of the ways, both verbal and non-verbal, in which partners connect with one another and enjoy their unique closeness.

A chronic, unpredictable disease like MS can challenge a couple’s intimacy in a variety of ways:

 

 

Barriers to Communication

MS affects everyone in the family—and both members of a couple are likely to have strong feelings about the unpredictable changes it brings to their lives. Finding comfortable ways to talk about the disease and its impact can be very difficult, at times leading to miscommunication or even silence. Learning how to share feelings and concerns is essential to maintaining intimacy.

Shifts in the Partnership

When the symptoms of MS temporarily or permanently interfere with a person’s ability to carry out his or her daily activities at home and at work, the roles and responsibilities within the family are likely to shift. If, and when, the relationship begins to feel too unbalanced—or one member of the couple begins to feel more like a caregiver than a partner—closeness and intimacy can be threatened. Identifying ways to maintain balance in the partnership is critical to maintaining an intimate partnership.

Added Stresses and Strains

MS can add to the normal challenges of everyday life by straining essential family resources, including money, time and emotional energy. When daily activities feel increasingly stressful, time-consuming or overwhelming, people may have little energy left for maintaining their emotional and physical partnership.Learning to manage everyday stresses and strains effectively can allow more time and energy for staying connected emotionally and physically.

Aside from the stress that arises in daily life for everyone, MS creates its own emotionally taxing predicaments, not the least of which is dealing with the unpredictable course of this disease.

The first thing to know is that stress can make any of us feel worse, whether by upsetting our stomachs or knotting our neck muscles. Many people with MS say they experience more symptoms during stressful times. When the stress abates, their symptoms seem less troubling or less severe. Therefore, learning to relax is essential.

But, relaxation isn't something you just decide to do. People have to learn to relax. You will need to discover what works for you, and you'll need to practice.

The Mind

Everyone experiences stress. But what is it, and what role does it really play in MS?

Bouts of severe depression, mood swings, and irritability, pose significant challenges for people with MS and their family members and can add to stress.

Simplifying daily life. Instructions on muscle relaxation, deep breathing, visualization, and more

A women's experience on anger—how to dissipate some of it and to channel the rest into a positive force.

The Body

Deep breathing and slow, gentle movements are the primary elements of this “moving meditation”—and it can be done sitting down

Whether swimming or sailing, working out in a gym, or competing at a round of golf, the revitalizing enjoyment of healthy exercise comes in many form.

Used to relax muscles, reduce stress, and relieve conditions exacerbated by muscle tension

With its emphasis on relaxation, breathing and deliberate movements, yoga is a good choice of exercise for people with MS.

Changes in Sexual Feelings and Responses

Sexuality is an important aspect of intimacy for most couples. And while MS can affect sexual feelings and responses in direct and indirect ways, sexual intimacy does not have to disappear from a couple’s life when one partner has MS.

Fortunately, a disease like MS can also bring people closer together. Many couples report that facing the challenges of MS has allowed them to connect with one another in new and powerful ways—finding an intimacy that was stronger than any they shared before.

Sexual problems are often experienced by people with MS, but they are very common in the general population as well. Sexual arousal begins in the central nervous system, as the brain sends messages to the sexual organs along nerves running through the spinal cord. If MS damages these nerve pathways, sexual response—including arousal and orgasm—can be directly affected. Sexual problems also stem from MS symptoms such as fatigue or spasticity, as well as from psychological factors relating to self-esteem and mood changes.

In a recent study, 63% of people with MS reported that their sexual activity had declined since their diagnosis. Other surveys of persons with MS suggest that as many as 91% of men and 72% of women may be affected by sexual problems. Ignoring these problems can lead to major losses in quality of life. Yet both individuals and health-care professionals are often slow to bring up the subject.

In women, symptoms include:

Reduced sensation in the vaginal/clitoral area, or painfully heightened sensation

Vaginal dryness

Trouble achieving orgasm

Loss of libido

In men, symptoms include:

Difficulty achieving or maintaining an erection (by far the most common problem)

Reduced sensation in the penis

Difficulty achieving orgasm and/or ejaculation

Loss of libido

Other MS symptoms cause problems in both sexes:

Fatigue and weakness can interfere with sexual interest and/or activity.

Spasticity can cause cramping or uncontrollable spasms in the legs, causing them to pull together or making them difficult to separate—either of which can make positioning difficult or uncomfortable.

Pain can interfere with pleasure.

Therapies Are Available to Treat Sexual Problems of MS

There are a variety of therapies to treat sexual dysfunction. For men, erectile dysfunction may be addressed through use of the oral medications Viagra® (sildenafil), Levitra® (vardenafil), and Cialis® (tadalafil); injectable medications such as papaverine and phentolamine that increase blood flow in the penis; the MUSE® system which involves inserting a small suppository into the penis; inflatable devices; and implants.

For women, vaginal dryness can be relieved by using liquid or jellied, water-soluble personal lubricants, which can be purchased over-the-counter. It is a common mistake to use too little of these products. Specialists advise using them generously. Petroleum jelly (Vaseline®) should not be used because it is not water-soluble and may cause infection.

Both men and women with MS and their partners can benefit from instruction in alternative means of sexual stimulation, such as the use of a vibrator, to overcome slow arousal and impaired sensation. Abnormal sensations and spasms can often be controlled through use of medication. Techniques such as intermittent catheterization or medication can control urinary leakage during intercourse.

Fertility, Conception, and Sexually Transmitted Diseases

MS does not affect the basic fertility of either men or women, although sexual problems may interfere with the ability of a man with MS to father a baby. "Dry orgasms," that impair fertility, have been reported by men with MS in several studies. These problems have been successfully treated with medication or through techniques to harvest sperm for insemination. Men who are concerned about fertility issues should consult a urologist experienced in this area.

Women and men with MS are also advised that they must make the same decisions and take the same precautions regarding birth control and sexually transmitted diseases as anyone else.

Emotional Issues

The emotional factors relating to changes in sexual function are quite complex. They may involve loss of self-esteem, depression, anxiety, anger, and/or the stress of living with a chronic illness. Counseling by a mental health professional or trained sexual therapist can address both physiologic and psychological issues. This therapy should involve both partners.

Reference:

The National MS Society. (n.d.). Intimacy. Retrieved September 17, 2010, from http://www.nationalmssociety.org/living-with-multiple-sclerosis/relationships/intimacy/index.aspx

*Employer Accomodations* Part V

Accommodations must always be made in collaboration with the employee who has MS as he or she is the expert of the disease within his or her body, the limitations present, and what will or will not directly affect his or her production level within the work environment (Cornell, 2001). Most individuals with MS have been able to develop and use non-traditional accommodations to lead relatively normal daily lives. However, those who require accommodations within the professional environment have a right to request these accommodations and the employer has a responsibility to allow or such accommodations.

Symptoms of MS Requiring Accommodations

            Fatigue. During and after an MS relapse, it is not uncommon for MS patients to describe a profound fatigue restricting the function of day-to-day activities. Fatigue is often the most common MS symptom resulting in accommodations being made concerning an employee’s work performance at peak activity levels during his or her work day (Cornell, 2001). Typically, MS patients will describe the beginning of the day when they feel at optimal performance levels with performance deteriorating throughout the day caused by fatigue. Modifying the typical work day where the employee has more mentally or physically demanding activities in the morning could help alleviate such fatigue in the afternoon (Cornell, 2001). Furthermore, allowing short 10 minute breaks throughout the day will allow the significance of fatigue to be reduced (Cornell, 2001).

Motor Weakness. By making sure the employee with MS is seated properly with the monitor at the right height, the mouse and keyboard positioned properly, and equipment nearby, pain and fatigue, though never eliminated, can be helped. Motor weakness can be elevated due to MS, so an ergonomic work environment may be necessary for an employee with MS to function at optimal levels (Cornell, 2001). Additionally, the employee should be allowed to keep some type of power mobility, such as a scooter or power chair, at work to facilitate easier travel within the work environment (Cornell, 2001).

Bladder and Bowel Control. Though these particular issues are typically managed by the employee and his or her medical team, certain instances will require accommodations by the employer. Accommodations will need to be made by the employer to allow for easy access to facility restrooms due to bladder and bowel control in MS patients. Additionally, allowing opportunities for the employee to change clothing, carefully schedule meals, and allowing an option to work from home during times when bowel and bladder issues are more severe are other accommodations employers should consider (Cornell, 2001).

Loss of Limb Sensation. Loss of sensation in the hands or fingers can cause difficulty with typing, and accommodations such as different pointers, sensation stimuli placed on the keyboard, or voice recognition may be needed (Cornell, 2001). Furthermore, experimenting with different computer pointing devices such as joysticks to replace a mouse is another useful accommodation to be considered.

            Cognitive. Cognitive challenges will make it difficult to remember tasks, and accommodations such as a digital personal assistant to help with remembering to do tasks, remembering how to perform a task, or remembering important deadlines or meetings may be needed (Wahlder, n.d.). Additionally, these particular reminders can be programmed to be sent to the employee’s phone to maximize routines throughout the day (Cornell, 2001). If a list of cognitive demands on the job could be analyzed, odds are that the employee enduring MS will find it much simpler to describe what he or she needs.

             Unpredictability. The progression of MS is the main factor that causes MS to be so unpredictable. This unpredictability, in a sense, can be planned for by both the employee and employer. Understanding the current limitations and possible limitations will prepare all involved for what may be needed or what may happen in the future (Cornell, 2001). Additionally, in part of understanding unpredictability, both the employee and employer should sit down and prepare of plan of attack, so to speak, for possible relapses where the employee would require a week of hospitalization or recovery that would involve a slower-paced return to work.

*Americans with Disabilities Act* Part IV

The Americans with Disabilities Act was created for the "equality of opportunity, full participation, independent living, and economic self-sufficiency" for persons with disabilities (Gordon, et al, 1997). The most crucial aspect of ADA is the prohibition of employment based on a disability (Gordon, et al, 1997). It is the responsibility of the employer to abide by the laws and regulations of the ADA to ensure that each employee can perform their work-related tasks with necessary accommodations provided by the employer.

The Spoon Theory

For so long, I have been trying to explain MS to those closest to me as well as to those who desperately need some understanding. About two years ago, I was told about the Spoon Theory by a friend of mine while at work one night. After she explained it to me, I spent the last year trying to explain this as well as she did for me. I found an incredible woman, Christine Miserandino, who explained the Spoon Theory regarding Lupus. However, this theory is relevant in any "invisible disease." Though I've changed Lupus to Multiple Sclerosis, this is her story:

My best friend and I were in the diner, talking. As usual, it was very late and we were eating French fries with gravy. Like normal girls our age, we spent a lot of time in the diner while in college, and most of the time we spent talking about boys, music or trivial things, that seemed very important at the time. We never got serious about anything in particular and spent most of our time laughing.

As I went to take some of my medicine with a snack as I usually did, she watched me with an awkward kind of stare, instead of continuing the conversation. She then asked me out of the blue what it felt like to have Multiple Sclerosis and be sick. I was shocked not only because she asked the random question, but also because I assumed she knew all there was to know about Multiple Sclerosis. She came to doctors with me, she saw me walk with a cane, and throw up in the bathroom. She had seen me cry in pain, what else was there to know?

I started to ramble on about pills, and aches and pains, but she kept pursuing, and didn’t seem satisfied with my answers. I was a little surprised as being my roommate in college and friend for years; I thought she already knew the medical definition of Multiple Sclerosis. Then she looked at me with a face every sick person knows well, the face of pure curiosity about something no one healthy can truly understand. She asked what it felt like, not physically, but what it felt like to be me, to be sick.

As I tried to gain my composure, I glanced around the table for help or guidance, or at least stall for time to think. I was trying to find the right words. How do I answer a question I never was able to answer for myself? How do I explain every detail of every day being effected, and give the emotions a sick person goes through with clarity. I could have given up, cracked a joke like I usually do, and changed the subject, but I remember thinking if I don’t try to explain this, how could I ever expect her to understand. If I can’t explain this to my best friend, how could I explain my world to anyone else? I had to at least try.

At that moment, the spoon theory was born. I quickly grabbed every spoon on the table; hell I grabbed spoons off of the other tables. I looked at her in the eyes and said “Here you go, you have Multiple Sclerosis”. She looked at me slightly confused, as anyone would when they are being handed a bouquet of spoons. The cold metal spoons clanked in my hands, as I grouped them together and shoved them into her hands.

I explained that the difference in being sick and being healthy is having to make choices or to consciously think about things when the rest of the world doesn’t have to. The healthy have the luxury of a life without choices, a gift most people take for granted.

Most people start the day with unlimited amount of possibilities, and energy to do whatever they desire, especially young people. For the most part, they do not need to worry about the effects of their actions. So for my explanation, I used spoons to convey this point. I wanted something for her to actually hold, for me to then take away, since most people who get sick feel a “loss” of a life they once knew. If I was in control of taking away the spoons, then she would know what it feels like to have someone or something else, in this case Multiple Sclerosis, being in control.

She grabbed the spoons with excitement. She didn’t understand what I was doing, but she is always up for a good time, so I guess she thought I was cracking a joke of some kind like I usually do when talking about touchy topics. Little did she know how serious I would become?

I asked her to count her spoons. She asked why, and I explained that when you are healthy you expect to have a never-ending supply of “spoons”. But when you have to now plan your day, you need to know exactly how many “spoons” you are starting with. It doesn’t guarantee that you might not lose some along the way, but at least it helps to know where you are starting. She counted out 12 spoons. She laughed and said she wanted more. I said no, and I knew right away that this little game would work, when she looked disappointed, and we hadn’t even started yet. I’ve wanted more “spoons” for years and haven’t found a way yet to get more, why should she? I also told her to always be conscious of how many she had, and not to drop them because she can never forget she has Multiple Sclerosis.

I asked her to list off the tasks of her day, including the most simple. As, she rattled off daily chores, or just fun things to do; I explained how each one would cost her a spoon. When she jumped right into getting ready for work as her first task of the morning, I cut her off and took away a spoon. I practically jumped down her throat. I said ” No! You don’t just get up. You have to crack open your eyes, and then realize you are late. You didn’t sleep well the night before. You have to crawl out of bed, and then you have to make your self something to eat before you can do anything else, because if you don’t, you can’t take your medicine, and if you don’t take your medicine you might as well give up all your spoons for today and tomorrow too.” I quickly took away a spoon and she realized she hasn’t even gotten dressed yet. Showering cost her spoon, just for washing her hair and shaving her legs. Reaching high and low that early in the morning could actually cost more than one spoon, but I figured I would give her a break; I didn’t want to scare her right away. Getting dressed was worth another spoon. I stopped her and broke down every task to show her how every little detail needs to be thought about. You cannot simply just throw clothes on when you are sick. I explained that I have to see what clothes I can physically put on, if my hands hurt that day buttons are out of the question. If I have bruises that day, I need to wear long sleeves, and if I have a fever I need a sweater to stay warm and so on. If my hair is falling out I need to spend more time to look presentable, and then you need to factor in another 5 minutes for feeling badly that it took you 2 hours to do all this.

I think she was starting to understand when she theoretically didn’t even get to work, and she was left with 6 spoons. I then explained to her that she needed to choose the rest of her day wisely, since when your “spoons” are gone, they are gone. Sometimes you can borrow against tomorrow’s “spoons”, but just think how hard tomorrow will be with less “spoons”. I also needed to explain that a person who is sick always lives with the looming thought that tomorrow may be the day that a cold comes, or an infection, or any number of things that could be very dangerous. So you do not want to run low on “spoons”, because you never know when you truly will need them. I didn’t want to depress her, but I needed to be realistic, and unfortunately being prepared for the worst is part of a real day for me.

We went through the rest of the day, and she slowly learned that skipping lunch would cost her a spoon, as well as standing on a train, or even typing at her computer too long. She was forced to make choices and think about things differently. Hypothetically, she had to choose not to run errands, so that she could eat dinner that night.

When we got to the end of her pretend day, she said she was hungry. I summarized that she had to eat dinner but she only had one spoon left. If she cooked, she wouldn’t have enough energy to clean the pots. If she went out for dinner, she might be too tired to drive home safely. Then I also explained, that I didn’t even bother to add into this game, that she was so nauseous, that cooking was probably out of the question anyway. So she decided to make soup, it was easy. I then said it is only 7pm, you have the rest of the night but maybe end up with one spoon, so you can do something fun, or clean your apartment, or do chores, but you can’t do it all.

I rarely see her emotional, so when I saw her upset I knew maybe I was getting through to her. I didn’t want my friend to be upset, but at the same time I was happy to think finally maybe someone understood me a little bit. She had tears in her eyes and asked quietly “Christine, How do you do it? Do you really do this everyday?” I explained that some days were worse then others; some days I have more spoons then most. But I can never make it go away and I can’t forget about it, I always have to think about it. I handed her a spoon I had been holding in reserve. I said simply, “I have learned to live life with an extra spoon in my pocket, in reserve. You need to always be prepared.”

Its hard, the hardest thing I ever had to learn is to slow down, and not do everything. I fight this to this day. I hate feeling left out, having to choose to stay home, or to not get things done that I want to. I wanted her to feel that frustration. I wanted her to understand, that everything everyone else does comes so easy, but for me it is one hundred little jobs in one. I need to think about the weather, my temperature that day, and the whole day’s plans before I can attack any one given thing. When other people can simply do things, I have to attack it and make a plan like I am strategizing a war. It is in that lifestyle, the difference between being sick and healthy. It is the beautiful ability to not think and just do. I miss that freedom. I miss never having to count “spoons”.

After we were emotional and talked about this for a little while longer, I sensed she was sad. Maybe she finally understood. Maybe she realized that she never could truly and honestly say she understands. But at least now she might not complain so much when I can’t go out for dinner some nights, or when I never seem to make it to her house and she always has to drive to mine. I gave her a hug when we walked out of the diner. I had the one spoon in my hand and I said “Don’t worry. I see this as a blessing. I have been forced to think about everything I do. Do you know how many spoons people waste everyday? I don’t have room for wasted time, or wasted “spoons” and I chose to spend this time with you.”

Ever since this night, I have used the spoon theory to explain my life to many people. In fact, my family and friends refer to spoons all the time. It has been a code word for what I can and cannot do. Once people understand the spoon theory they seem to understand me better, but I also think they live their life a little differently too. I think it isn’t just good for understanding Multiple Sclerosis, but anyone dealing with any disability or illness. Hopefully, they don’t take so much for granted or their life in general. I give a piece of myself, in every sense of the word when I do anything. It has become an inside joke. I have become famous for saying to people jokingly that they should feel special when I spend time with them, because they have one of my “spoons”.

MS Fatigue

"I'm so tired."

"I feel like I've been hit by a truck after participating in a marathon."

"I have absolutely no strength."

"It exhausts me to blink."

"I just want to sleep."

"It drains me to think."

For too long, I struggled with these very thoughts. The once active lifestyle I had turned into a lifestyle that seemed sedentary and boring. Once I discovered that what I was feeling was related to MS and was not my fault, I was able to form ways to alleviate the "tired" feeling I continually struggled with. Even today, however, I push myself to the brink of collapsing just to see how far and how hard I can push my body. Although I always listen to what my body tells me, there are things that I desperately want to do but know I shouldn't. Understanding my limitations and working through the roadblocks that may hinder my journey tend to be the primary focus of my daily life.

Pamela Martin (2000) has a brilliant explaination of MS fatigue, the causes of the "tired" feelings MS patients commonly have, and treatments:

I am often reminded of the time I set out for what was to be a short walk. Struggling with an armload of groceries, I was in a hurry to get home. Unfortunately, I came upon construction debris in the road, and was forced to take a detour around the mess.

As fate would have it, the path I chose was deceptively circuitous. As one road led way to another, I discovered that I was going in circles. My legs grew weary and the load heavier as I continued through the winding course. By the time I stumbled home, I was completely and deathly exhausted. In short, I used much more energy navigating through the twisting and zigzagging course than if I’d been able to use the more direct approach.

My experience is illustrative of the process at work in MS. Myelin-damaged roadblocks force the communication mechanisms of the brain to take less effective, and roundabout routes. This inefficient detour can result in a burdensome fatigue for the person with MS, both physically and mentally.

Physical Fatigue

When asked about MS-specific fatigue, many sufferers anecdotally describe it as "bone-tired" or a "wearing a suit of armor" feeling. It differs from normal fatigue in that there is generally no easy correlation between the amount of energy expended and the severity of the weariness. You would expect someone who just scaled Mt. Olympus to feel extremely exhausted. You would not expect that same level of exhaustion from someone who merely cooked a simple dinner. Yet, the problem is not simply an amplification of normal fatigue. There are many more nuances involved in this symptom.

MS fatigue is often variable, sometimes unrelenting, and generally appears regardless of the amount of sleep the patient gets. Some patients find that although they regularly get a full night’s sleep, they awaken in the morning unrefreshed. Many require a scheduled nap in the afternoon when the fatigue is at its worst levels. For me, I have found no connection between the total rest I get, and the way I feel at any given moment. There have been times where I have gotten plenty of sleep the night before, but spent the next day in a zombie-like stupor, where even the simplest task requires a superhuman effort. On the other hand, there have been times where I made it through an unusually busy day, yet felt no ill effects for several days.

Mental Fatigue

Not only does MS fatigue drain a patient physically, but it can also cause mental distress. Remember the child’s game of trying to pat your head and rub your stomach at the same time? It was hard to concentrate on both tasks at the same time, so ultimately, you ended up not doing either chore very well. Many people with MS can relate to that feeling of being mentally overwhelmed. Often, the dysfunctional nervous system is working overtime, processing the enormous sensory data that we experience daily. Because the process is disrupted and inefficient, it may be difficult to hold a conversation and listen to background music at the same time. Or someone may find it impossible to drive at night because the array of lights and sounds are disconcerting. Similarly, I was once struck dumb and unable to answer a store clerk who simply asked me for my telephone number. Because my senses were already overloaded from the shopping experience, my brain simply shut down when faced with a simple question. At that moment I was just mentally worn out.

What Causes MS-related Fatigue?

Although scientists have no definitive answer, a couple of likely theories are presented regarding the cause of MS fatigue.

Location, Location, Location. One theory holds that fatigue is related to the loss of myelin--the protective coating of the nerve fiber. The locations where the myelin loss occurs are responsible for the severity and type of fatigue. In this scenario, it is the cerebral abnormalities themselves that contribute to fatigue. The random placement of myelin lesions or loss could account for the variety of ways people with MS experience the symptoms of fatigue.

Interestingly, a 1999 study found fatigue severity did not correlate with myelin scarring or deterioration as observed on MRI. (1) Correspondingly, a 1998 study suggested that the differences in fatigue levels could not be solely explained by the degree of disease activity or disability. (2) There is certainly a great need for more study in this area.

Poor Body Functioning. It has also been speculated that the general deterioration of overall functioning as a result of having MS may simply exhaust the body’s storehouse of energy. Muscle weakness and decreased nerve conduction are the obvious culprits. But some researchers have noted that altered metabolism and inadequate respiration are other energy-depleters. Again, further investigation is needed in this area.

Treatments

Above all, patients must consult with their physician or other health care professional to determine the value of treatments available for MS fatigue. The prescription drug, Neurontin®, which is used to control tremors and spasms, has been reported by some users to relieve fatigue as well (although the reasons for this are not totally understood). In addition, amantadine (Symmetrel®) and pemoline (Cylert®) have been helpful to a small number of MS patients. Unfortunately, others have found them to be complete failures at remitting fatigue, and have caused unwanted side effects.

Cephalon, Inc. recently reported positive findings from a new clinical study on the effectiveness of Provigil®. Generally used for the treatment of narcolepsy, this medication was statistically successful in reducing fatigue in a study of MS patients.

Because these medications are of limited effectiveness, and can be accompanied by unwelcome side effects, many patients combat fatigue in other ways. Patients learn how to simplify and manage their daily tasks more effectively, so as to save energy. Physical therapy can teach some how to obtain benefits from using assistive devices to prolong energy. In addition, avoiding heat, taking scheduled naps, limiting overexertion, managing stress, and monitoring the effects of medication are other steps taken to combat fatigue.

Reference:

 Martin, P. (2000). MS and the fatigue factor. Retrieved October 28, 2008, from http://www.healingwell.com/library/ms/martin1.asp

*After the Diagnosis* Part III

The initial MS diagnosis comes with a list of fears, anxiety, confusion, and lack of control. Though there are 95% of Americans with MS who are still employed, fewer than 25% of these individuals continue working 5 to 15 years after the initial diagnosis (Cornell, 2001). Those diagnosed with MS would prefer to continue working and live a relatively normal, healthy life – or the life they led before the diagnosis. However, the harsh reality of MS is that the lack of control and confusion coupled with a tremendous sense of anxiety and fear wreaks havoc on the lives of those diagnosed.

Right to Disclose Diagnosis

Patients have the right to determine whether they inform their employer of the MS diagnosis, but through information, knowledge, and support, transitioning from a life before MS to a life after MS will be much easier and less stressful if those within their professional lives are made aware of the accommodations that are needed (John, 2012). It is best for both the employee and employer to be informed and utilize resources available to them to receive additional information of what to expect with MS.

Understanding

            Those diagnosed with MS desire to work (Cornell, 2001). Not every patient diagnosed with MS cannot return to work and lead a relatively normal life. Furthermore, not every patient diagnosed with MS has limitations severe enough to call for accommodations. However, with continued research and information available regarding MS, its treatments, and its complications, those diagnosed with MS feel better prepared to face their professional life after the diagnosis with the help and support of their employer (Cornell, 2001).     

Proving Hope, Words of Encouragement, and Support can Make a Difference

For years, it seems I am battling myself. I always think that there is more that I could be doing with this life I have been given. Although the way I live my life is far from perfect, I know that being diagnosed with MS is my blessing in disguise. The diagnosis transformed who I had become and has shaped me into the woman I am today. Though there are still countless struggles, and though I often sit up at night wondering what I am doing with my life, I know that, somehow, I am making a difference in another's life with my own.

A wonderful, inspiring, and generous friend of mine sent this to me via Facebook. For privacy purposes, I won't disclose her name, but her words prove to me that "somehow, I am making a difference in another's life with my own."

She writes:

"Hey Desiree,

You have no idea how much I miss your face! I just wanted you to know how much of an amazing person you are. You are such an inspirational person, and I'm so glad I met you! I've been struggling depression all my life; and the picture you posted really spoke to me. I've been coming clean to a lot of my friends in the past year, and they don't really know how to handle it. I hope my post gives them a little insight.

You, my dear, are incredible! Your drive to overcome is one of my biggest sources of motivation. I just want you to know how much love I have for you. I know it's getting tougher for you; and I just want you to know that you have support.

I guess I just sent this to say, 'Thank you!'"

She may never know how her words have affected me...

What does MS "Look" Like?

 Too often, I hear people explain that they do not know what MS "looks" like. Though it is, primarily, an invisible disease (in the beginning), there are ways MS can be "seen."

The white areas circled in red illustrate lesions. This image was the preliminary image that initially diagnosed the MS in myself.

Taken on my 21st birthday, these images illustrate the progression of MS in myself. This is proving that the initial medication I was on, Avonex, was not right for me.

Heat Intolerance (Vitally Important - Especially during Summer)

Heat intolerance, or anhidrosis as it is scientifically known, is a classic symptom of MS where a rise in temperature whether it’s internally or externally, may temporarily increase MS symptoms.

What causes in Heat Intolerance in MS?

The destruction of myelin, the protective sheath which surrounds and protects nerve fibres causes the formation of plaques on the nerves which slow nerve impulses. A build up of heat slows down nerve transmission causing symptoms to worsen.

Many people with MS experience a temporary worsening of their symptoms when the weather is very hot or humid or they’re running a fever, sunbathe, get overheated from exercise, or take very hot showers or baths.

These temporary changes can result from a very slight rise in core body temperature, even as little as one-quarter to one-half of a degree, because an elevated temperature further impairs the ability of a demyelinated nerve to conduct electrical impulses.

What are the symptoms of Heat Intolerance?

• Some people notice that their vision becomes blurred when they get overheated; this is known as Uhthoff's Symptom.
• Others report an increase in symptoms such as fatigue, general tremor, intention tremor, decrease in cognitive function and memory problems.

For many years, the ‘Hot Bath’ test was used to diagnose MS. A person suspected of having MS was immersed in a hot tub of water, and the appearance of neurological symptoms or worsening of symptoms was taken as evidence that the person had MS (interesting, no?).

It must be emphasised heat coupled with increased humidity generally produces only temporary worsening of symptoms and does not cause more actual tissue damage. The symptoms are generally rapidly reversed when the source of increased is dealt with and it is most important to remember that heat does not cause an actual exacerbation.

How can Heat Intolerance be managed?

• By drinking lots of fluids, preferably water or diluted fruit juices because dehydration due to perspiring can make it worse.
• By sucking on ice cubes or ice lollipops can help.
• By trying to remain in air-conditioned surroundings as much as possible on hot and humid days.
• Some people find cooling down before activity, by having a cold bath or shower gives them more energy or stamina.
• Using cooling products such as a mister spray or cooling gel in wristbands or scarves is also extremely effective.

(Heat, 2012).

Reference

Multiple Sclerosis Resource Centre. (2012). Heat intolerance. Retrieved June 26, 2012, from http://www.msrc.co.uk/index.cfm/fuseaction/show/pageid/1708



What does Multiple Sclerosis Feel Like?

Painful Heavy Legs: Apply tightly 20 pound ankle weights and 15 pound thigh weights then take a 1 mile walk, clean the house, go shopping and then sit down - how are you feeling now?

Painful Feet: Put equal or unequal amounts of small pebbles in each shoe then take a walk.

Loss of Feeling in Hands and/or Arms: Put on extra thick gloves and a heavy coat then try and pick up a pencil. If successful, stab yourself in the arm.

Loss of Feeling in Feet and/or Legs: Ask a doctor for a shot of novocaine in both of your legs then try and stand up and walk.

TN (Trigeminal Neuralgia): Take an ice pick and jam it into your ear or cheek whenever the wind blows on it or a stray hair touches it. If you want something easier to do, get someone to punch you in the jaw - preferably daily.

Uncontrollable Itching:  Glue or sew small steel wool pads to the inside of your shirt, pants and undergarments then wear them for an entire day.

Tingling: Stick your finger in an electrical socket - preferably wet.

Tight Banded Feeling: Put 12 inch wide belt around you, make is as tight as you can, and leave it there for the entire day.

Shots: Fill one of our spare needles with saline solution, and give yourself a shot every time we do our shot.

Side Effects From the Shot: Bang your head against a wall, wrap yourself in a heating pad, wrap your entire body with an ace bandage tightly then finally treat yourself to some spoiled food or drink.

Trouble Lifting Arms: Apply 20 pound wrist weights and try and reach for something on the highest shelf in your house.

Spasticity: Hook bungee cords to your rear belt loops, rear pant leg cuffs, shirt collar, and cuffs on shirt sleeves then go dancing.

Poor Hearing/Buzzing in Ears: Put a bee in each ear then put a plug in each one...bzzzzzzzzzzzzzzzzzz

Balance and Walking Problems: Drink 100 proof grain alcohol then sit and spin in an office chair for 30 minutes. Now, try to walk.

Urgently Needing to Pee: We put a .5 liter remote controlled water bag and drip tube in your pants, we point out 2 restrooms in a crowded mall then we tell you that you have 30 seconds before we activate the water bag (by remote control) to get to a restroom. Just for spite, we may make that 20 seconds without telling you.

Bizarre and Inexplicable Sensations: Place tiny spiders on your legs or arms, and allow them to periodically crawl around throughout the day.

Pins and Needles:  Stab yourself repeatedly with needles all over your body or better yet....get a large tattoo.

Dizziness (Vertigo): Get on a gently rocking boat all day and night, and take several walks around the deck.

Fatigue: Stay awake for two full days to induce incredible fatigue then cook dinner, clean the house, walk the dog, and see how you feel.

Burning Feeling: Make a full pot of boiling water and then have someone fill a squirt gun with the boiling water and shoot it at yourself all day long. However, you can give us the pleasure of shooting you instead...optional of course.

Intention Tremor: Hook your body to some type of vibrating machine and try to move your legs and arms.....hmmm are you feeling a little shaky?

Buzzing Feeling When Bending Our Heads to Our Chest (L'Hermitte's): Place an electrical wire on your back and run it all the way down to your feet, then pour water on it, and plug it in.

Vision Problems (Optic Neuritis): Smear vaseline on glasses then wear them to read the newspaper.

Memory Issues: Have someone make a list of items to shop for, and when you come back that person adds two things to the list then they ask why you didn't get them. When you come back from shopping again, they take the list and erase three things and ask why you bought those things.

Foot Drop: Wear one swim fin, and take about a 1/2 mile walk.

Depression: Take a trip to the animal shelter everyday, and see all the lonely animals with no home. You get attached to one of the animals, and when you come back the next day, you come in while they are putting her/him asleep.

Fear: Dream that you have lost complete feeling in your feet and when you wake up wiggling your feet, just so happens they don't move. Think about this every night wondering whether something on your body won't work the next day.

Swallowing: Try swallowing the hottest chili pepper you can find.

Heat Intolerance or Feeling Hot When it's Really Not: You are on a nice vacation to Alaska. It's 35° outside and 65° inside. Light a fire for the fireplace and then get into it. Once you have reached about 110° tell me how you feel, even a person without MS would feel bad, now add all of the above symptoms - welcome to our world.

And Finally: After subjecting yourself to the items above, let everyone tell you that you are just under a lot of stress, it's all in your head and that some exercise and counseling is the answer.

*What is Multiple Sclerosis* Part II

Multiple Sclerosis (MS) primarily affects patients who are in their most productive years with quality of life being disturbed, unemployment being high, and disruption of career paths being prominent (Gordman, Feldman, Shipley & Weiss, 1997). Often, after the initial diagnosis, patients are left with feelings of helplessness and confusion and find it impossible to explain a disease in which they cannot understand. With problems arising from slurred speech, bladder and bowel control, spasticity, paresis, mobility, and more prominently, fatigue, it is imperative for employers with employees who have MS to understand the complexity of the disease, realize the complications of MS, and work with the employee so he or she does not have to battle his or her employer while battling the disease. Knowledge is power, and through research, both the employer and employee can be powerful beyond measure. Through the understanding of what Multiple Sclerosis (MS) is and how it affects every facet of the human body and psyche, employers will have a better grasp of how employees affected with MS should be treated and the accommodations that should be made available to these individuals should they be needed.

MS is an autoimmune disease affecting the central nervous system resulting in the protective covering around the nerves in the brain, myelin, to be destroyed causing scars (sclerosis) which prevent nerves from connecting properly (National Multiple Sclerosis Society, 2011). There are four stages of MS: relapsing-remitting MS, primary-progressive MS, secondary-progressive MS, and progressive-relapsing MS.

Relapsing-Remitting MS

NMSS (2011) explains that relapsing-remitting MS is the most common form of MS with nearly 85% of patients being diagnosed with this type. The attacks, or relapses, are followed by near complete recovery periods in which no progression of the disease occurs (NMSS, 2011).

Primary-Progressive MS

Primary-progressive MS has slowly worsening neurologic function from the beginning with no distinct relapses or recovery (NMSS, 2011). Nearly 10% of patients are diagnosed with this type of MS experience various progressions over time containing periods of plateauing and improvements (NMSS, 2011).

Secondary-Progressive MS

Secondary-progressive MS is a type of MS that follows the initial period of relapsing-remitting MS in which the disease worsens at a steadier pace (NMSS, 2011). Typically, relapses, recoveries, and plateaus may or may not occur.

Primary-Relapsing MS

Finally, progressive-relapsing MS is the rarest form of MS with 5% of patients being diagnosed with this type (NMSS, 2011). Those diagnosed with this type of MS experience steady worsening of the disease from the beginning with worsening of symptoms along the course of the disease. Additionally, those with this type of MS could experience some form of recovery following the relapse, but the disease continues to progress (NMSS, 2011).

Since each individual diagnosed with MS is different and the course of the disease is different, it could be potentially difficult to accurately pinpoint the direction the disease is going. Furthermore, even though there is no known explanation for the cause of MS, scientists have explained theories about the causes of MS which include immunologic, environmental, infectious, and genetic (NMSS, 2011).

Immunologic

Said to be an autoimmune disorder which is a response to the body’s immune system that negatively affects the myelin in the central nervous system, it is still unknown why or how MS is caused (NMSS, 2011). With research, scientists have been able to derive a series of medications that can slow the disease, and efforts are still ongoing to find medication to stop the disease.

Environmental

It has been discovered that MS occurs more frequently in areas that are farther away from the equator (NMSS, 2011). Those who are born in areas of the world with a higher risk of MS who move to areas with a lower risk before the age of 15 will acquire the risk of the new area they are in (NMSS, 2011). Additionally, it is being suggested that those who are exposed to a certain environmental agent (still unknown) before puberty may be predisposed to MS.

Infectious

Though there are no viruses or infections that have been a definite cause of MS, scientists believe that the initial exposure to certain viruses, bacteria, and microbes that cause demyelination and inflammation during childhood could be a triggering factor of MS (NMSS, 2011). Viruses such as measles, canine distemper, human herpes virus-6, Epstein-Barr, and Chlamydia pneumonia are being investigated as possible causes of MS (NMSS, 2011).

Genetic

MS is not hereditary, but having a relative such as a parent or sibling with MS increases the likelihood that an individual carries the genetic predisposition of MS (NMSS, 2011). There are some scientists who believe that a person is born with a certain genetic predisposition that reacts to an environmental agent, and upon exposure, can trigger an autoimmune response (NMSS, 2011).

*In the beginning...* Part I

In November 2005, a vibrant, independent, driven twenty-year-old woman began to experience flu-like symptoms. The inability to keep anything in her body was overwhelming, but she had experienced the flu before, so she thought it would subside over time. After two weeks, the agonizing pain of being void of food swept through her body. Sixteen days after the first onset of symptoms, she lost hearing out of her left ear. Two days later, she lost sight out of her left eye. The same day, she began having difficulty forming coherent sentences and thinking clearly. One day after her vision had failed, she was unable to feel anything from the waist down resulting in dragging her limp, near lifeless body across the floor of her third story apartment. She tried desperately to relieve the symptoms by pulling herself into a hot bath, but the inability to distinguish hot from cold made her terrifying fear worse. Her last memory of her ordeal was looking down at her legs to see blisters from the heat of the bath water she could not feel.

December 16, 2005, she was taken to the hospital via ambulance. Upon arrival to the hospital, an overdose, stroke, and seizure were questioned. With numerous MRIs, CT scans, and five lumbar punctures, the man who she would soon come to know as "Papa Bear," her neurologist, Dr. Wulff, realized the unthinkable. The evening of December 16, 2005, she was alert, but the symptoms still wreaked havoc on her body. She fell asleep that evening questioning why this was happening to her and wishing for an answer of some kind. The morning of December 17, 2005, Dr. Wulff walked into her hospital room. With her parents, brother, and best friend in the room, he looked at her and said, "From this day forward, your life is going to change. You may not understand it now, but one day you will know the true reason behind the struggles and adversities you face. Desireé, you have Multiple Sclerosis.