About Multiple Sclerosis

Multiple Sclerosis (MS) is a progressive disease that affects the central nervous system. It gradually destroys the fatty layer called the myelin sheath that protects neurons in the brain and spinal cord. The myelin sheath is essential because it helps neurons carry electrical signals. Multiple Sclerosis refers to multiple scars on the myelin sheath. There are four types of multiple sclerosis, each with its own set of challenges which can be presented or expressed differently in each individual who experiences this disease:

1. Relapsing-Remitting Multiple Sclerosis (RRMS): RRMS is the most common form of MS where symptoms can relapse and go into remissions. People with RRMS can develop Secondary Progressive MS usually within ten years.

2. Secondary Progressive Multiple Sclerosis (SPMS): Usually occurs five to fifteen years after the disease begins. SPMS worsens progressively and can or cannot relapse. As the disease progresses, there can be fewer exacerbations (attacks). SPMS is not as common as RRMS.

3. Primary Progressive Multiple Sclerosis (PPMS): PPMS worsens over time with no relapse or remissions. At times, the symptoms may stay the same or temporarily improve. PPMS is usually diagnosed in people over forty.

4. Progressive Relapsing Multiple Sclerosis (PRMS): PRMS is a rare form of MS. It is a gradual continuous worsening of symptoms from the beginning.

Symptoms of MS include:

• Balance and Coordination (gait): Consists of shaky movements, unsteady gait, tremors/shaking, muscle weakness, numbness, or dizziness. Assistive walking aids (leg braces, canes, walkers, crutches, wheelchairs…) may be needed when daily routines or tasks become difficult.
• Spasticity: When the nerves are damaged, mobility becomes slow. Arms and legs feel heavy and stiff, and the individual feels pain. Eventually, range of motion can be lost and spasms occur. Walking, moving, and even performing routine activities require more work and energy.
• Fatigue: Fatigue can be the most debilitating symptom, as it interferes with almost all activities of daily living. Fatigue can be caused by an increase in activity, but it can also arise without any specific cause. Although most people look ‘normal’ during episodes of fatigue, they feel completely exhausted (and often “flu” like). It can occur at any time of the day but usually occurs in the later part of the afternoon and can also be exacerbated by temperature fluctuations. Fatigue can be relieved by cooling down and a period of rest.
• Bladder and Bowel Problems: Bladder and bowel problems are common with MS, including incontinence, urinary tract infections, and constipation. Often medications are prescibed in an attempt to control these issues.
• Swallowing: Because of nerve damage, the individual may not swallow voluntarily causing a feeling of choking or “drowning.” This can occur with or without food or drink. Medications and therapy can assist with swallowing difficulties.
• Vision Problems: Vision problems are caused by damage to the myelin on the optic nerves. It can involve one or both eyes. Symptoms can include blurred vision, followed by vision loss in one spot, and sometimes the entire field of vision is affected. Other symptoms include dim vision (low vision), sensitivity to light, a decrease in clear vision, problems distinguishing colors, and jerky eye movements that can make reading and walking difficult. There is often pain with eye movement. Vision problems can also be exacerbated by temperature fluctuations, where it may take awhile for vision to return to normal. The inflammation can be managed by cooling down the body and with steroid medications.
• Sensory Symptoms: Numbness, tingling, prickly feelings, itchy feelings, or tightness occurs due to the nerve damage (myelin erosion of the sensory pathways from spinal cord to brain). Numbness can be felt anywhere, including the face (increasing speech difficulties). There could be a decreased sensitivity to touch or the inability to feel a toe or a finger (increasing mobility issues). There is also a feeling of tightness that causes breathing difficulties or difficulty moving arms, legs or the trunk of the body.
• Heat Sensitivity: Even small increases in body temperature can effect sympoms. Some individuals may have lesions in the temperature control area of the brain – elevating body temperature beyond the normal range (99 – 100 degrees). With each degree above normal, complications or other problems may occur.
• Cognition: Most people with MS experience cognitive problems (thinking, memory, and learning). Areas most affected are that of attention, memory, and information processing speed. These can and do have a negative impact on activities of daily living (i.e., relationships, employment) which can cause or increase depression. Cognitive issues can be treated with medication and rehabilitation.
• Pain: People with MS experience pain caused by muscle spasms, cramps, and injury to the sensory nerve fibers. Facial pain can cause speech distortion also. Increased sensitivity to touch and tight muscles causes pain.
• Lack of Muscle Control in the Hands: Individuals with this symptom find it difficult to hold utensils such as a pen/pencil and can have difficulty typing.
  
• Sleep Disorders: Sleep disorders can develop due to pain or incontinence as a result of the need to get up frequently, move, or find a comfortable position. This problem adds to existing/on-going fatigue issues.
  

• If possible, come to campus ahead of the residency to familiarize yourself with the terrain. Since Goddard dorms are not available between residencies, ask the Plainfield, VT campus services staff or the Port Townsend, WA residency office staff, or contact the Academic & Disability Support (ADS) Coordinator for information about local lodging.
• Since residencies have extremely full schedules, it is important to pace oneself by choosing the most important residency events to attend and taking time out to rest.
• Investigate what assistive technology might be helpful before your program begins. If you aren’t familiar with assistive technology, the ADS Coordinator can connect you with resources.
• Consider bringing a laptop to minimize need to travel to the computer lab.
• Let the ADS Coordinator know if you need will need assistance at meals or shuttle service.
• If your condition is progressive, keep the ADS Coordinator updated about your latest symptoms to be sure that the best accommodations are in place to address them.
  
• Consider what tools would be helpful to navigate the terrain – cane, walker, wheelchair, personal assistant, headlamp, etc.  Check with the Plainfield, VT campus services staff or the Port Townsend, WA residency office staff about the terrain of your residency site.
  

Considerations When Working with Students who have Multiple Sclerosis

• Students with MS may need extra time to travel between residency events. They may use a wheelchair, or walker, leg braces, or a cane. They will likely need the opportunity to plan schedules to minimize travel time or distance between events.
• In some cases, residency events may need to be relocated if possible, or a student may need all meetings in a ground floor location.
• Extra attention to structuring studies by breaking tasks down into smaller, manageable segments can help when cognitive symptoms are present.
  
• Consideration of mobility issues is important for field trips. Is the location to be visited accessible? Is there accessible transportation?
• It’s best not to assume that assistance is needed. Wait for students with mobility impairments to ask for help.
• If a student with MS is in a wheelchair, it is considered polite to try to converse at eye level and impolite to lean on the wheelchair, which is an invasion of personal space.
• If a student’s speech is compromised, it is okay to ask the student to repeat what they said.
• Some students may have limited hand or arm dexterity which means they may wish to tape presentations, lectures, or workshops and/or have access to lecture notes from faculty or other students. These students may also benefit from voice recognition software to dictate writing by speaking. They may also need extra time for written tasks.
• Some students may have low vision which, in addition to creating mobility issues, can make academic tasks such as reading and writing challenging. These students may need extra time, as well as access to books in audio format or screen readers.
• Some students may need assistance with evacuation in case of an emergency.

Selected Resources on Multiple Sclerosis:

National Multiple Sclerosis Society