| There are an estimated 350,000 people
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| | their wheelchair is not always the only
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| with MS in the United States; that is
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| | obstacle in which they must contend.
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| about 1 in every 1000 people (National MS
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| | As previously stated, no two MS patients
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| Society, Interview, 2001). About 1/3 of
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| | are alike. Each has their own degree of
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| M.S. patients are able to lead their
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| | symptoms and limitations. Telling a
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| lives with only occasional setbacks;
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| | person with MS how well someone else is
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| about 1/3 continue their lives with some
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| | doing, is not encouraging to the person
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| limitations and helpful equipment to
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| | more affected by the disorder. The fact
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| avoid and tolerate more frequent
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| | that your aunt Gertrude is living with
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| relapses; about 1/3 do not have
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| | only occasional symptoms or ones that are
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| remittance of symptoms, as they must
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| | not debilitating, has no correlation to
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| adjust to daily limitations (Rocky
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| | another person's situation. So, it can be
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| Mountain MS Center, Seminar for Newly
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| | very discouraging to hear about how well
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| Diagnosed, 1991).
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| | someone else with MS is doing! Multiple
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| It is difficult to know just exactly how
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| | Sclerosis actually means, multiple scars.
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| many people are affected by MS, because
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| | These scars are the destroyed myelin,
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| "doctors and hospitals do not have to
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| | which is a vital, insulating material in
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| report numbers to the health department,
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| | the brain and around the spinal chord.
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| etc. since MS is not a contagious disease
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| | This myelin is similar to the insulation
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| like AIDS or tuberculosis" said Kathy
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| | around the wiring of your alarm clock. If
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| Jensen of the National MS Society
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| | there is a defect in the wire, the
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| (National MS Society, Interview, 2001).
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| | electricity will not be able to travel
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| When people think of MS, they often think
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| | correctly from the socket to your clock
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| of a wheelchair, because MS is known for
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| | (or as in humans, from your brain to your
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| causing paralysis. Thus, many think that
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| | body parts).
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| if they cannot see a cane, walker or
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| | The severity, amount and location of the
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| wheelchair, that MS must not affect the
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| | myelin damage are all factors in the
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| person. Yet, it is estimated that about
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| | determination of whether or not the
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| 65% percent of people with MS can no
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| | messages from the brain are getting to
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| longer work, even though 33% of people
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| | their destination. Thus, even if you know
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| with MS will use a wheelchair most of the
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| | someone else who has been diagnosed with
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| time (National MS Society, Interview,
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| | MS, it does not mean that another person
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| 2001).
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| | should be affected in the same way. One
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| Notably, the 1994-1995 Survey of Income
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| | may not have as much scar tissue or it
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| and Program Participation (SIPP) found
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| | may not be in an area that is as crucial
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| that about 54 million people had some
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| | to the central nervous system, than the
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| level of disability and 26 million
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| | other.
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| persons were considered to have a severe
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| | Usually, the scar tissue that has already
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| disability. Yet, only 7.0 million persons
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| | formed by the time of diagnosis and does
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| used a visible device for mobility; thus,
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| | not heal. However, some cases have been
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| 19 million people who were defined as
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| | documented where the myelin has
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| severely disabled, did not use a
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| | regenerated. Still, the nerves underneath
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| wheelchair, cane, crutches or walkers.
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| | are still damaged. Thus, prevention of
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| In other words, 73% of Americans with
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| | relapses and avoidance of further damage
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| severe disabilities do not use such
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| | is the focus. So, hearing about others
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| devices (McNeil, Americans With
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| | who are still able to do what our loved
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| Disabilities: 1994-95, 1997). Therefore,
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| | one can no longer do is not going to
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| a disability cannot be determined solely
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| | miraculously heal their spinal cords and
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| on whether or not a person uses a cane,
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| | brains. Instead, it will only make them
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| walker or wheelchair.
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| | frustrated that we may think that they
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| Whether or not a person uses such
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| | are not doing as well, because they do
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| assistive devices, what most people do
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| | not have as good of an attitude or
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| not realize is that MS can cause over 35
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| | determination.
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| different symptoms. Many of these can
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| | If a person's arm was severed, it would
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| range from mild and occasional, to
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| | not matter how positive they were, it is
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| debilitating and constant. Here are just
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| | not going to grow back. Yes, attitude is
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| a few: Exhaustion, stiffness, numbness,
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| | very important in dealing with an illness
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| tingling, blurred vision, depression,
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| | and even in preventing further stress and
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| disorientation, dizziness,
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| | degradation, but it is not going to
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| in-coordination, acute pain, speech
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| | suddenly make their scar tissue go away.
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| problems, parasthesia, flu-like symptoms,
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| | Nor is it going to encourage them to hear
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| headaches, cognitive difficulties, memory
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| | about how well Aunt Gertrude is doing,
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| loss, bowel/bladder dysfunction and mild
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| | because she has a less significant amount
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| to debilitating fatigue (Rocky Mountain
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| | of damage. Therefore, we must be mindful
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| MS Center, Seminar for Newly Diagnosed,
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| | not to imply that they have MS, because
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| 1991).
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| | they lack a positive attitude! People
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| Whether or not they use an assistive
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| | with MS have to make various adjustments
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| device, one of the biggest complaints
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| | at different levels. Those in the early
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| from those who live with MS is that
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| | stages may have to tolerate occasional
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| people assume they are "feeling good,"
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| | tingling or numbness. Those in the mid
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| because they are told they "look good."
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| | stages may have to cope with frequent
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| Many with MS have difficulty working and
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| | bouts of fatigue, severe numbness and/or
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| performing duties of daily living,
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| | paralysis and must re-organize their
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| because of the "invisible" symptoms such
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| | lives to avoid these relapses. Those in
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| as extreme fatigue, pain, weakness,
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| | the progressive stage may experience
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| exhaustion and cognitive impairments.
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| | debilitating pain and fatigue that may
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| This can be quite frustrating for someone
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| | not remit. Sometimes they become
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| with MS, because despite the way they
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| | disabled, unable to obtain lifetime goals
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| look on the outside, they may be greatly
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| | and lose careers in exchange for basic
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| hurting on the inside. Their symptoms,
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| | survival needs.
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| limitations and damage from the disease
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| | During relapse for patients in the mid
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| are not always apparent from the outside.
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| | stages of MS and all of the time for
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| Debbie, a woman from South Carolina
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| | patients in the chronic stages of MS,
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| wrote, "I have M.S. and I can not make my
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| | even simple household tasks that once
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| husband understand he can not see how I
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| | were never given a thought can now be
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| feel" (IDA Guestbook, 2000).
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| | inconceivably difficult or physically
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| MS often follows a pattern of going into
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| | impossible. For instance, simply dusting
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| remission and relapse, because 85% of
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| | could have to be spread out into a
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| people with MS have this relapsing/
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| | two-day chore, sacrificing all other
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| remitting form of MS (National MS
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| | activities to do so. Even preparing a
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| Society, Interview, 2001). Many of them
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| | meal is often a goal that these patients
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| find help from treatments and prevention
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| | fail to accomplish.
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| of another relapse and further damage,
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| | Imagine yourself being so sick, you can
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| but some do not. 15% of people with MS
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| | barely move, lift your arms or stand,
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| are in the primary progressive stage
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| | knowing you need to do every day things
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| (National MS Society, Interview, 2001),
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| | like take a shower, make a meal or wash
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| meaning they do not go into remission.
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| | some laundry. Each day you must pick and
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| Those in this group are not always
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| | choose one or two things to accomplish,
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| candidates for the current "ABC" drugs
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| | leaving the other 100 things to
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| designed to help a person in remission to
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| | accumulate. You feel helpless, tied down
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| avoid further relapse.
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| | and trapped like a prisoner inside your
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| One thing that is stressed in seminars
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| | own body.
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| and literature about MS is that every
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| | Going out for an errand or social
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| patient is different. Each has their own
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| | gathering takes even another juggle. In
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| individual symptoms, degree of symptoms
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| | order to exert the energy to do this,
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| and level of limitations. Whether or not
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| | many with MS must prepare for the journey
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| their limitations seem obvious on the
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| | by giving up various daily duties. For
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| outside, it is vitally important to
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| | some, after the excursion, their symptoms
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| remember their struggle on the inside.
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| | multiply and intensify, leaving them
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| For those who are able to walk, each step
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| | lying in bed, often unable to converse,
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| to them may be like hiking up a very
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| | think or even lift the covers up over
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| steep mountain with a severe case of the
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| | their bodies.
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| flu. Moreover, for those who cannot,
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| |
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