Help Multiple Sclerosis

Recognizing that some treatment interventions or medications might be acceptable to one individual but not to another, the physician is prepared to present options while respecting the patient's right and need to be part of the decision-making process. The physician thus conveys to the patient and family the important message that they will not be alone in their efforts to cope with the disease and make meaningful choices for themselves.
 

Help Multiple Sclerosis

Many people with MS and their family members become overwhelmed at one time or another by the extent of the physical and psychosocial problems that can be created by MS. One of the physician's priorities is to reduce this overwhelming feeling by helping people identify smaller, more manageable problems that have workable solutions. This approach is particularly useful for the family that comes to the doctor demanding, for example, either a cure for the person's MS or that the person be made able to walk again. The family is frightened by the disease and unable to focus on any goal other than total eradication of the problem.
 
Physicians who fall victim to these demands may develop feelings of failure that cause them to withdraw from the family and the patient. Rather than "buying into" the family's demands for a cure or a miracle, the physician must help the family recognize and experience its grief over the losses they are experiencing, and then focus on more specific problems that can be addressed satisfactorily. Careful management of common symptoms (e.g., fatigue, spasticity, pain, bowel and bladder problems, sexual dysfunction, and psychological changes) can significantly enhance a person's comfort, independence, productivity, and overall quality of life.
 
In this brief description of the doctor's role in the treatment of chronic disease, the family has been mentioned several times. In marked contrast to the doctor-patient relationship in acute illness, which may never involve family members at any point from diagnosis to cure, the ongoing collaborative relationship in chronic illness often involves one or more family members (or "significant others"). Healthcare providers who are experienced in MS care are well aware of the impact of this type of chronic illness on the entire family. From the time of diagnosis onward, patients and family members all need to accommodate the changes brought by MS into their lives.
 
With careful attention to issues of confidentiality, privacy, and autonomy, the physician, patient, and family members decide who in the family will give and receive medical information, and who will have a say in treatment planning. The rationale for any of these decisions needs to be discussed in detail and reassessed as family roles evolve, or whenever changes in the patient's condition or in the family's ability or willingness to participate in the treatment process necessitate a change. Thus, for example, the role of parents in the treatment decisions concerning a 17-year-old child with MS will begin to change as the child grows into maturity and wishes to make more decisions independently.

Similarly, family members who were initially less involved in treatment decisions may need to become more involved if the person with MS becomes cognitively impaired to a degree that interferes with the decision-making process. To find out more, you can check out Help Multiple Sclerosis.

 

Multiple Sclerosis Centers

MULTIPLE SCLEROSIS IS a chronic, neurologic disease for which there is not a cure. Until 12 years or so ago, its treatment was limited to symptom management with a variety of medications. Major advances over the past few years are enabling us for the first time to decrease the rate of attacks and slow disease progression. In spite of these advances, however, we still cannot make the disease go away. 
 

Multiple Sclerosis Centers

As a result, the doctor-patient relationship in MS differs significantly from the traditional diagnosis-treatment-cure model that often applies to acute illnesses. In a long-term illness like MS, a more comprehensive model, involving diagnosis + education + collaboration problem solving + support, begins with a timely diagnosis and continues for the remainder of the person's life. This model of care promotes the person's efforts to live comfortably and cope effectively with the ongoing demands of the disease.
 
The role of the physician in a chronic illness like MS is described, and the model of comprehensive care that has gradually evolved in response to the long-range needs of individuals and families living with MS is discussed. Next follows a look at the impact of "managed care" on the comprehensive care of people with MS, and recommendations for ways that individuals and families can work with their physician and healthcare team to maximize their own health and well-being.
 
The Role of the Physician in MS Care 

THE EARLY HISTORY of MS care was often characterized by what the late Dr. Labe Scheinberg called the "diagnose and adios" school of medicine. Many physicians, frustrated by their inability to provide patients with a cure, gave them a diagnosis and sent them on their way - to live with MS as best they could. Other doctors were reluctant to give the illness a name, and simply told patients that it was a virus and nothing to worry about or, worse yet, that the symptoms were all emotional and required psychiatric treatment.

When physicians shy away from an illness they cannot cure, or withhold vital information from patients and their families, their own discomfort is clearly communicated. The patient and family feel abandoned and burdened with the weight of uncomfortable feelings and unanswered questions.

A meaningful doctor-patient collaboration begins with an accurate diagnosis. Once the diagnosis has been made and explained in a straightforward and understandable way, the person (and his or her family) can begin learning how to adapt to, and cope with, life with the disease. This initial phase of the doctor-patient relationship can, and should, set the stage for the entire therapeutic relationship. Hearing the diagnosis from a physician who conveys the information in a thorough and supportive manner gives the person a greater sense of control and mastery. It conveys the reassuring message that the doctor is there "for the long haul," to help the patient and family members learn to deal most effectively with the disease and manage any symptoms or problems that may arise.
 

Once the MS diagnosis has been made, the physician's focus shifts to treatment, not only of current symptoms, but also of the disease process itself. The doctor's goal is to help each person live optimally with MS, both now and in the future. Because each patient is unique, the doctor can only achieve this goal if he or she takes the time to understand the person's values, lifestyle and priorities, as well as the current symptoms. Armed with this information, the doctor can begin to educate the person about available treatment options for the short term (e.g., management of specific symptoms) and the long term (e.g., treatment to reduce the number of attacks and slow disease progression). Using a supportive, educational approach, the physician engages the patient and family in the treatment process, working to create an atmosphere that encourages open communication and active collaboration. To find out more, you can check out Multiple Sclerosis Centers.

Multiple Sclerosis Treatment Guidelines

Treatment of Cognitive Changes
 
THE IDEA THAT we should try to do something about cognitive changes in MS is almost revolutionary. It is, however, one of the fastest growing areas of MS treatment. Here is a brief survey of some of the options.
 

Multiple Sclerosis Treatment Guidelines

Symptomatic Medications
 
THERE IS AS yet no "memory pill" that can improve cognitive function in MS. A class of drugs called potassium channel blockers (4-aminopyridine (4-AP) and 3, 4 diaminopyridine) have been studied for several years. The potassium channel blockers increase the speed of nerve conduction in demyelinated nerve fibers, leading investigators to think that they might improve neurologic function and cognition. Unfortunately, these drugs can put one at risk for seizures because they speed up nerve conduction. A sustained-release version of 4-AP is currently under study. At this time, however, these drugs are not FDA-approved for general use.

Donepezil hydrochloride (Aricept) has been approved by the FDA for the treatment of memory disorders in Alzheimer's disease. A recent study of' 69 MS patients with memory deficits showed that Aricept had modest benefits for verbal memory - in this case, the ability to remember a list of words. A larger, multi-center trial of Aricept has begun, and should provide more definitive evidence concerning the effectiveness of this drug.
 
Disease Modifying Agents
 
FlVE DRUGS ARE now approved by the FDA for the treatment of MS - the interferon-beta medications (Avonex, Betaseron, and Rebif), glatiramer acetate (Copaxone), and mitoxantrone (Novantrone) - and many more are in clinical trials. Avonex has demonstrated the most positive benefits on cognition. Results with getaseron have been mixed, while the results with Copaxone were negative. No studies examining the impact of Rebif on cognitive functions have been reported to date.
 
Although none has shown dramatic benefits for slowing the progression of cognitive dysfunction or reversing its effects, investigators remain optimistic. While many of the earlier clinical trials did not adequately assess cognitive function, recent clinical trials are paying closer attention to cognitive problems. If a treatment is capable of slowing or halting the process of demyelination, it should help preserve cognitive function in people who have MS. The jury is still out on this question, but an educated guess is that the verdict is likely to be positive.
 
Cognitive Rehabilitation
 
COGNITIVE REHABILITATION IS a systematic program designed to improve cognitive function; it is conducted individually and/or in groups by a psychologist, speech pathologist, or occupational therapist. Such programs have been common in head injury and stroke for many years, but are just coming into their own in MS.
 
If an MS specialist is not available, a clinician with experience treating mild head injury would be a reasonable alternative since many of the problems are similar.

Compensatory Strategies
 
COGNITIVE REHABILITATION SESSIONS generally combine exercises and drills to challenge and improve cognitive functions (e.g., memorizing lists of words) with the design and implementation of compensatory strategies for dealing with cognitive changes (e.g., use of a notebook as a memory aid). Like fitness programs, cognitive rehabilitation works best when you have a "personal trainer" to direct and encourage you. However, there are many things you can do on your own to improve your situation.
 
If your memory is weak, substitute organization. Set up a family calendar and put everyone's activities on it. Buy a loose-leaf organizer (e.g., Day-Runner, Day-Timer) and set up sections for appointments, things to do, names, addresses, phone numbers, driving directions, and so forth. Set up a home filing system to keep track of all personal papers. Process incoming mail and other papers quickly to avoid accumulations. Set up checklists for repetitive tasks, such as a packing list for travel or a master grocery list for checking off needed items. Set up a distraction-free "zone" in the house and make sure family members respect it. Establish a fixed storage place for frequently used items like eyeglasses and scissors so you can always find them. Involve the entire family so that everyone assists in the organizational changes.
 

MULTIPLE SCLEROSIS IS a complex disease with many ramifications for the psychological life of the individual and the family. Adjusting successfully to MS requires understanding and addressing these psychological changes along with the physical ones. There are many resources available for education, evaluation, and treatment. By using these resources to the fullest, the family living with MS can succeed in living more comfortably with an unwelcome but persistent intruder. To find out more, you can check out Multiple Sclerosis Treatment Guidelines.

 

Liberation Treatment For Multiple Sclerosis

Research

UNDERSTANDING COGNITIVE DEFICITS is important for family members who are trying to cope with these changes. Much of our understanding has come from scientific research, especially during the last 20 years. What follows is a brief summary of some of that research.

Liberation Treatment For Multiple Sclerosis

Cognitive changes can affect anyone with MS, whether they have had the disease for 30 years or 30 days and whether they are confined to a wheelchair or running a marathon. In other words, there is little or no relationship between duration of the disease, or severity of physical symptoms, and cognitive changes.

Although people who have had MS for a long time, or have a progressive course, are at slightly greater risk for cognitive changes, even those who are recently diagnosed and/or have a relapsing remitting disease course, can have such deficits. Cognitive deficits can worsen during an exacerbation and lessen as a remission sets in, although the fluctuations in these symptoms appear to be less dramatic than the changes seen in physical symptoms such as walking and vision. Cognitive changes can and do progress like other MS symptoms, but the progression appears to be very slow in most cases. One major study in this area found very little progression over a 3-year period.

Much of the research on cognition in MS has used neuroimaging techniques, especially magnetic resonance imaging (MRI). There is a strong relationship between cognitive changes and the amount of demyelination that has taken place. Some research has also attempted to relate demyelination in specific locations of the brain to particular cognitive deficits. This type of research is challenging because most people with MS have demyelination in a number of locations in the brain. Some interesting findings, however, have begun to emerge.

• The right and left halves of the brain are connected by a structure called the corpus callosum. When this structure is extensively demyelinated, people with MS are likely to experience slowed information processing, memory loss, and difficulty with tasks that require the left and right sides of the brain to work together.
• When the frontal lobes (areas just behind the forehead that are responsible for thinking and reasoning) are significantly demyelinated, there tend to be problems with memory and executive functions - for example, the ability to organize, sequence, prioritize, initiate, and follow through on a complex sequence of tasks leading to a specific goal.

As research methods become more sophisticated, we will broaden and deepen our understanding of how cognitive function is affected in MS, and work to develop more effective strategies for dealing with these changes.
 
"Functional" MRI studies have begun to show that during certain cognitive tasks, the brains of people with MS actually behave differently than brains of people without the disease. Areas of the brain that are typically "activated" during certain types of tasks are less activated among individuals with MS. Moreover, areas of the brain that are normally inactive during those same tasks do become activated, almost as if the brain were compensating by shifting gears to get the job done.
 
Evaluation 

THE FIRST STEP in dealing with cognitive changes is to recognize that they have occurred. People with MS often find that others do not take their complaints about cognitive loss seriously. Well-intentioned family and friends will say things like, "Oh, I forget appointments, too. That happens to everybody...." or "We're just getting old!" Such reassurances tend to trivialize and invalidate what is a very real set of problems based on a specific neurologic disease - problems in a different class entirely from those due to human frailty, imperfection, and aging. Unfortunately, physicians often reinforce these denials by the use of very brief "mental status" examinations that fail to detect any but the most extreme cognitive changes. Research has shown that such mental status examinations miss at least 50 percent of the instances of cognitive change in MS.

Adequate assessment of cognitive deficits in MS may require an extensive battery of neuropsychological tests. Such batteries can last from 6 to 8 hours or more and cost upward of $2,000. Briefer screening batteries have been developed, which use a carefully selected set of standardized tests shown to be effective in summarizing the results of the longer batteries. Ideally, the evaluation should be done by a psychologist or neuropsychologist who is experienced in MS, although some speech-language pathologists and occupational therapists perform similar types of evaluations.

In addition, it is important to assess other psychological factors such as depression and anxiety that may be contributing to cognitive problems. Such an evaluation should probably be done by a psychiatrist or a neuropsychiatrist, a specialist who has had training in both neurology and psychiatry. A good assessment will let you know where you stand and provide the starting point for planning treatment, career change, vocational rehabilitation, and improved family dialogue. To find out more, you can check out Liberation Treatment For Multiple Sclerosis.

Characteristics Of Multiple Sclerosis

Disinhibition And Poor Impulse Control
 
PERHAPS THE RAREST but most dramatic of the emotional changes seen in MS involves loss of normal behavioral inhibitions and control over impulses. People who experience this problem may be socially or sexually inappropriate, have uncontrollable rages, and may even be assaultive or self-destructive. Such behavior is almost impossible to live with and can lead to criminal charges or involuntary psychiatric hospitalization. For some people, this behavior follows a waxing and waning pattern associated with exacerbations. 
 

Characteristics Of Multiple Sclerosis

For others, it is simply part of their day-to-day behavior. There is no evidence to suggest that such behavior is under voluntary control or has anything to do with the person's moral character or values. Instead, it is almost surely a direct result of demyelination in those parts of the brain responsible for inhibition. Disinhibition and poor impulse control may at times be successfully controlled with one of the moodstabilizing drugs such as divalproex sodium, carbamazepine (Tegretol), or lithium. However, in extreme cases, hospitalization and/or the use of a major tranquilizer such as haloperidol (Haldol) may be necessary.
 
Medication Side Effects 

A NUMBER OF MEDICATIONS are used in the management of MS and its symptoms, and many of them can affect mood. These include steroids for exacerbations, baclofen (Lioresal) for spasticity, pemoline (Cylert) for fatigue, and the interferon-beta medications (Avonex, Rebif, Betaseron). In the past, little attention has been devoted to the effects of these drugs on mood.
 
Perhaps the most dramatic effects can be seen with steroids. Many people get a "high" while on steroids and actually become manic. In addition, the cessation of steroid treatment often produces transient depression. People who have a history of extreme reactions to steroids, especially if they become "high," may be treated in advance with a mood-stabilizing drug such as divalproex sodium (Depakote). The depressive reaction at the end of treatment can be treated with an antidepressant, but often it is helped sufficiently by an awareness of its cause and emotional support until it passes on its own.
 
There has been much discussion in recent years about the possibility that interferon-beta precipitates depression. It is well known that the interferons have the potential to alter mood when they are used in very high doses. However, research concerning the effects of interferon on mood in people who have MS has been inconclusive. Every person reacts differently to drugs. Given the variety of drugs used in MS, and the even greater variety of possible combinations, it is probably wise to be alert to the potential for significant emotional side effects. In MS, there are many forces at work to stir up emotional reactions and changes of all sorts. Careful attention to the potential side effects of treatments can help reduce one source of intrusion into the emotional lives of people with MS.
 


Impact Of Cognitive Changes
 
IN AN IMPORTANT study of cognition and employment, it was found that 16% of people with MS-related cognitive impairment were working compared with 44% of an identical sample of people with MS who were not cognitively impaired. In other words, cognitive changes are more predictive of a person's ability to remain employed than is physical disability.
 
Cognitive impairment can have a similarly negative impact on the fulfillment of family roles and responsibilities, especially if memory loss leads to unreliability. Unfortunately, family members are often unaware that MS can cause cognitive problems or they do not connect the changes in behavior they see with the person's MS. Failure to remember things that have been discussed or tasks that were supposed to have been done can cause much family strain. Family members often see these lapses as evidence of an "attitude" problem, insensitivity, lack of concern, or laziness.

Teenagers may be quick to recognize and capitalize on a weak memory. ("You told me I could go to that party. Don't you remember anything?") Anger and confusion often accompany cognitive changes because of these misunderstandings and miscommunications. In many instances, the most helpful strategy for the family is to clarify exactly what is going on, and why, and come up with some simple strategies for dealing with the problems brought on by cognitive changes. To find out more, you can check out Characteristics Of Multiple Sclerosis.