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Living Well With MS




The Disease Process

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Multiple Sclerosis is a chronic neurological disorder of the Central Nervous System (CNS) - the Brain and Spinal Cord. There are several types of cells that comprise this system. For our purposes the most important are the Nerve Cells.

Tiny, tree-shaped marvels of nature, human nerve cells are composed of delicate fibers known as Axons that extend throughout the body in gossamer networks that crisscross in staggeringly complex patterns, carrying crucial Aeurological messages to different parts of the body, and ultimately connecting the CNS to other vital organs and every other part of the body.

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Nerve fibers are composed of highly sensitive tissues, and they require a special housing to protect them. Nature has threaded them through the body in a layered casing of white fatty tissue known as Myelin sheaths. These sheaths insulate the fibers from abuse, and help quicken the transfer of nerve impulses along them. For unknown reasons, small patches on these Myelin sheaths are attacked and stripped away.

Soon therafter star shaped Neurological cells known as Astrocytes arrive in the scene to repair the damaged sites, but during this rebuilding process they cause scar tissue, known as gliotic plaques, to form. These plaques become hard and sclerotic - a sclerosis is a thickening or hardening of cellular tissue - and then begin to interfere with or obstruct the flow of nerve impulses that pass along the nerve cells.

Normally, for example nerve Impulses travel along Axonal pathways at around 225 miles an hour. When a section of Myelin is destroyed, Nerve Impulses are slowed down to half that speed or even less. This means that command messages sent do not arrive at the normal speed, and often become garbled or confused in the transmission.

If a sclerotic patch is small, about the size of a pinhole, it may affect only a single function of the body. If large, an inch or more, it may disturb several functions at once. If a plaque heals and then another forms elsewhere, the type of symptom produced will change, along with its location in the body. If several plaques are active at the same time they will produce multiple disturbances.

The symptoms produced by DeMyelination correspond to the particular areas that are attacked and DeMyelinated. If one or more plaques are in the Brain, fatigue may occur along with Slurred Speech, Dizziness, and/or Muscle Weakness in the Arms.

    Symptoms produced depend on
    • the size of the plaque
    • where in the CNS the plaque is situated
    • how many plaques are present at a given time

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It is this very fact that MS plaques can be disseminated in so many different places within the CNS and that several plaques may be active at any one time, that it earns the name of Multiple Sclerosis, ie, many scars in many places. An alternative name used more commonly in England is "Disseminated Sclerosis."



Crowded Confusing Environments

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Some MS patients find that busy places and mobbed social scenes make them Anxious and Unfocused. For persons with Balance difficulties the jostling of crowds can be risky business. Those with Vision Disorders find driving at night or in heavy traffic to be problematic.

Msers with Bladder Disorders may feel that excusing themselves from a social gathering every few minutes to use the bathroom is embarrassing; after a while they simply choose to stay at home. But assuming that you are on your feet, there is no real reason to stay at home. Instead, schedule activities around your specific limitations.

For instance, if Confusion is a problem, Socialize with Small Groups rather than large. If loud gatherings seem overwhelming, Stick With Smaller, Intimate Affairs. When you are socializing in a crowd, Avoid Speaking To Several Persons At Once. Simultaneous verbal input coming from different directions can be distracting to Msers. Stay with One Conversation at a time.

Pick and choose your recreational spots. If you bowl or play golf and assuming your condition permits, go on the off days or nights of the week when fewer people are around. Pick relatively Quiet, Uncrowded places to get together with friends; a small restaurant, a neighborhood pub, your own dinner table. Avoid malls and shopping complexes on weekends and holidays when the crowds are heavy.

Shop at supermarkets in the off morning hours. Don't drive during peak traffic times. Leave for work at an earlier hour to avoid traffic snarls. If you take a bus or subway, travel during the off times. If you commute regularly to school or work, carpool and let others do the driving.

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During the Christmas season it may be expedient to send a relative out to do your shopping for you; or you may wish to shop by mail. If you live in a city and enjoy excursions, choose times of the day when the streets and parks, museums and theaters, are the least populated. Those who walk to work should consider taking a less crowded route.

Parents who take their children to a playground are advised to find a play area that is off the beaten track and that has plenty of benches for sitting down. Take rests whenever necessary. Plan ahead. In other words, you don't have to severely curtail your comings and goings when you have MS. Simply live and have fun in ways that place less pressure on you while you are at it.



Fatigue

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Fatigue is a major problem among MSers and limits almost everyone at one time or another. Thus the suggestions given above apply here as well. Don't Push Yourself. Learn To Live Within The Margins Of Your Energy Quotient and plan your activities accordingly. Avoid taking on more tasks than you can handle. Budget Your Time. When you are tired, Rest. When you are forced to abandon a project due to exhaustion, Pick It Up Later at your conveience.


Combating Fatigue

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Perhaps the most common of all MS symptoms is fatigue. It seems to go along with the MS territory, slowing patients down physically and psychologically; and proving especially problematic during the weeks and months after a flareup.

What can be done to relieve this enervating and seemingly omnipresent condition? Pharmacologically speaking, the choices are limited. Perhaps the only medication doctors have had any success with so far is Symmetrel (Amantadine), a drug ordinarily prescribed for the reatment of Parkinson's Disease and Asian flue.

The reasons why Symmetrel helps MSers are not understood, for though it appears to promote the release of the NeuroTransmitter Dopamine from the Basal Ganglia areas of the Brain, theoretically this mechanism of action alone should not produce any particular ameiliorating effects on MS related fatigue.

And yet it seems to do just that, and certainly few people will object. Although there are no assurances here, doctors have found that patients who take this medication often show a measurable if not dramatic lifting of their pep and energy level, and hence on their general outlook on life. As a bonus, Symmetrel often improves MS tremor, just as in Parkinson's Disease, and is sometimes given specifically for this purpose.

Symmetrel's side effects are minor. Jitteriness and dryness of the Mouth are both common. Blurred Vision can occur and may pose a special difficulty for patients who are already suffering from Optic Neuritis or glaucoma. If any of these are a problem patients are advised to inform their doctor before taking the drug.

Other side effects can include Constipation, Dizziness (especially when standing up suddenly), and a harmless but unsightly skin condition known as Livedo Reticularis, which produces purplish blotches on the thights or forearms, and which occasionally remains after the medication has been discontinued.

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Aside from Symmetrel there are few other medicinal choices in the battle against fatigue. Some doctors report limited success with Cylert (Pemoline), a Central Nervous Stimulant used to treat concentration and attention deficits in hyperactive children.

AntiDepressants may be given, as Depression produces a Lassitude that is Emotional as well as Physical in origin. Vitamins such as those in Brewer's Yeast, Vitamin A, C, E, and the B complex are sometimes touted as energy producers, though these claims remain clinically unproven. Likewise, Manganese, Zinc, and Potassium Gluconate supplements, Vitamin B12 injections, and various megavitamin regimes are used.

Coffee and caffeine drinks are also recommended for tiredness, but these substances do not "give" the body energy, as is commonly believed, they simply stimulate certain organs to produce more of it. Once this effort is expended, an energy deficit is produced, which is often equal and opposite to the energy surge formerly experienced - hence the afternoon "down" complained of by many heavy coffee and soda drinkers and, on a greater scale, by drug stimulant users.

In this sense Caffeine and other drugs give with one hand and take back with the other. In all the chemical choices for tiredness and fatigue are limited. This means that if fatigue is to be confronted it must be done in other ways, specifically by the conservation of energy and by the pacing of one's activities.



Treating Tremors

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Tremors are common among MSers, though their range and intensity vary markedly. Some persons with Ataxia will present with wide excurstions of movement in the Arms and Hands, and will be unable to perform the most simple manual task such as buttoning a shirt or guiding a spoon to the Mouth.

These tremors are not in the majority fortunately. More often a subtle oscillation of the head or trunk appears and disappears periodically, they often go unnoticed by others.

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When shaking is slight, patients are able to compensate with simple tricks such as keeping their arms close to their bodies when making arm movements or using adaptive devices to accomplanish difficult manual tasks. In instances where Tremors are exacerbated by Emotional Agitation, the sedative effect of AntiHistamine drugs such as Atarax (Hydroxyzine) will relax the person and thus the shaking.

In still other cases Inderal (Propranolol), a Blood Pressure and Angina medication, produces improvement and is most effective in Cerebellar Tremors that originate in the Basal Ganglia part of the Brain. As mentioned above, Symmetrel is sometimes prescribed for shaking and has the added effect in some patients of relieving exhaustion.

When a Tremor is related to Spasticity, AntiSpasticity drugs such as Lioresal may slow it down enough to restore functionality to the affected parts.

Finally, there is some evidence that Isoniazid, one of the three major drugs used for treating Tuberculosis, has a Tremor dampening effect, especially for a severe tremor.

Since this drug tends to produce Liver toxicity in the large doses necessary for Tremor control, however, and since it is a relative newcomer to the MS pharmaceutical canon, its use is controversial and should be considered only in extreme cases, and then only when accompanied by regular Liver Function Studies.

Overall, pharmacologic treatment of MS tremor is disappointing, and as yet no single drug achieves anything approaching total success. Physical Therapists often recommend exercises that concentrate on Stability, especialy of the Shoulder, Pelvis, Hips, and Trunk.

An exercise known as patterning requires patients to repeat certain movements many times with resistance added by the PT as the movements become increasingly automatic. With repeated practice, these motion patterns become fixed in the body's muscular memory and, to some extent, reprogram and improve motor skills.



Speech & Swallowing Disorders

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The type of Speech and Swallowing Disorders developed by MSers depends on which area of the Brain is DeMyelinated, and in turn on which parts of the Tongue, Lips, Larynx, Vocal Cords, and Throat are affected. Speech may be slurred, unusually rapid, eccentric in rhythm, weak, or choppy. Swallowing reflexes may be impeded or delayed; sensations in the oral passageways may be severely diminished.

In cases of Speech or Swallowing Disorders - both, happily, are relatively rare among MSers - there is little that can be done from pharmacologic standpoint, and the brunt of the work will involve management and rehabilitation.

Speech language pathologists specialize in swallowing and speech problems, using such techniques as diet modification, special food preparation techniques, mouth and throat exercises, postural modification and muscle-retraining techniques, all of which at times can prove extremely effective.


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