Tag Archives: MS

New England Disabled Sports: Winter Activities

About New England Disabled Sports
New England DisAbled Sports is a national recognized program which provides year round adaptive sport instruction to adults and children with physical and cognitive disAbilities.

Their programs allow individuals with disabilities to enjoy a boundary-free environment, enjoy outdoor recreation with friends and family, as well as provide access to equipment and instruction that might otherwise be unavailable.

Their Mission:
The Mission of New England Disabled Sports is, through sports, to change lives affected by disabilities. Download New England Disabled Sports brochure

Their Vision:
They envision a world where disabilities are not barriers.

Their Values:

  • They embrace volunteerism
  • They foster community
  • They strive for excellence
  • They listen to and learn from everyone
  • They nurture personal development through high-quality training and instruction
  • They strive for diversity

Winter Activities

Alpine Skiing

Mono skiing
The mono ski is a device used mainly by people with limited use (or absence) of the lower extremities. A mono ski, also known as a sit-ski, consists of a molded seat mounted on a metal frame. A shock absorber beneath the seat eases riding on uneven terrain and helps in turning by maximizing ski-snow contact. Modern mono skis interface with a single, ordinary alpine ski by means of a “ski foot,” a metal or plastic block in the shape of a boot sole that clicks into the ski’s binding. A mono skier use outriggers for stability; an outrigger resembles a forearm crutch with a short ski on the bottom. People new to mono-skiing are often surprised to see how much terrain is skiable in a mono ski; advanced mono skiers can be found not only carving turns on groomed runs but also skiing moguls, terrain parks, race courses, glades and even backcountry terrain—in short, wherever stand-up skiers can go.

Bi-skiing
A bi-ski is a sit ski with a can be skied independently like the mono-ski with hand-held outriggers, or can be skied with the assistance of an instructor using stabilizing outriggers and tethers. The skier moves his or her head, shoulders or hand-held outriggers to turn the bi-ski. The bi-ski has a lift mechanism for getting onto a chairlift. It can also be used to accustom a new sit-skier to the snow before moving to a mono-ski. Bi-skis are used by people with upper and lower limb impairments and with poor balance. People with these impairments might bi-ski:

  • Cerebral palsy
  • Multiple sclerosis
  • Muscular dystrophy
  • Amputees
  • Spinal cord injury
  • Severe epilepsy
  • Spinal bifida
  • Severe balance impairment

Outriggers are metal elbow crutches with the tip section of a ski pivoted on the bottom of the crutch. Some outriggers have adjustable brakes attached to the back edge of the ski to give some speed control. Outriggers are used to aid balance and/or to give support. Outriggers are used by mono-skiers, bi-skiers and standing skiers needing aid with balance.

3-Track & 4-Track skiing
3 track skiing is defined as skiing on one ski with outriggers to maintain balance. The student is able to stand on one ski and maintain dynamic balance with the assistance of outriggers (poles). 4 track skiing is very similar to 3 track but the skier has 2 feet on skies, rather than one.

Visually Impaired
Alpine (downhill) skiing is one of the rare opportunities available that allows the blind individual to move freely at speed through time and space. It provides the opportunity to embrace and commune with the primal force of gravity, thus experiencing the sheer exhilaration of controlled mass in motion, in a physically independent setting.

For those with Visual Impairment, a sighted Guide is needed. For lesser impairment the guide may simply need to ski a short distance in front of the skier to show the way. Skiers with greater vision loss or who are totally blind will generally ski using a headset arrangement to give audible instruction.

Snowboarding
Snowboarding has become very popular with New England DisAbled Sports students. People with cognitive or physical disAbilities are able to participate and experience the thrills of riding the mountain. The number of snowboarding lessons increases each year as the sport grows in popularity within our community. New England DisAbled Sports offers ski and snowboard lessons daily throughout the winter season.

Snowshoeing
Come explore the snow trails and fresh air of the mountains covered in snow while snowshoeing. Enjoy a winter hike in the woods from the more stable base of snowshoes. Take in peaceful scenery while working to improve your physical fitness level, balance and spatial awareness. You’ll love it!

Winter Biathlon
A seemingly unlikely combination of events – one is an aerobic activity (skiing or running) which requires strength, speed and endurance; the other is a passive activity (shooting) which requires concentration and a steady hand (difficult after you’ve been skiing, running or walking all out!).

Adaptive Golf

Whether you want to learn the game or hone your skills, there is a golf program for everyone! Many solutions exist for whatever stops you from enjoying the game of golf, from carts to clubs to accessories and specialty devices.

  • Adaptive golf carts now have swivel and extending seats and armrests to play while seated as well as elevating lifts that allow paraplegics and others with limited leg strength to play from a standing position.
  • Adaptive golf clubs can have special grips for those with missing fingers, deformed hands, osteoarthritis or loss of strength. Some are specialized for seated or standing golfers. Some club shafts are bent for seated individuals.
  • Gloves and grip aids include prosthetic golf grip devices, elastic gripping devices and more.
  • Accessories include tee setters and ball retrieval systems to reduce bending. One device even stabilizes your balance.

Search for a golf program for those with disabilities in your area to get tailored instruction from golf instructors certified to teach. For more information, check out national associations like the National Alliance for Accessible Golf, the Disabled Sports USA, and/or the United States Golf Assoc.

The Adaptive Golf Foundation of America has scrambles, classics, opens, championships and tournaments across the country throughout the year.

Neuromuscular Disorders

Neuromuscular disorders affect the nerves that control your voluntary muscles. Voluntary muscles are the ones you can control, like in your arms and legs. Your nerve cells, also called neurons, send the messages that control these muscles. When the neurons become unhealthy or die, communication between your nervous system and muscles breaks down. As a result, your muscles weaken and waste away. The weakness can lead to twitching, cramps, aches and pains, and joint and movement problems. Sometimes it also affects heart function and your ability to breathe.

Examples of neuromuscular disorders include

Many neuromuscular diseases are genetic, which means they run in families or there is a mutation in your genes. Sometimes, an immune system disorder can cause them. Most of them have no cure. The goal of treatment is to improve symptoms, increase mobility and lengthen life.

Multiple Sclerosis Awareness

Multiple sclerosis (MS) is an unpredictable, often disabling disease of the central nervous system that disrupts the flow of information within the brain, and between the brain and body.

Types of MS


Four disease courses have been identified in multiple sclerosis: relapsing-remitting MS (RRMS), primary-progressive MS (PPMS), secondary-progressive MS (SPMS), and progressive-relapsing MS. Each of these disease courses might be mild, moderate or severe.

Relapsing-remitting MS (RRMS)
RRMS — the most common disease course — is characterized by clearly defined attacks of worsening neurologic function. These attacks — also called relapses, flare-ups or exacerbations — are followed by partial or complete recovery periods (remissions), during which symptoms improve partially or completely and there is no apparent progression of disease. Approximately 85 percent of people with MS are initially diagnosed with relapsing-remitting MS.

Secondary-progressive MS (SPMS)
The name for this course comes from the fact that it follows after the relapsing-remitting course. Most people who are initially diagnosed with RRMS will eventually transition to SPMS, which means that the disease will begin to progress more steadily (although not necessarily more quickly), with or without relapses.

Primary-progressive MS (PPMS)
PPMS is characterized by steadily worsening neurologic function from the beginning. Although the rate of progression may vary over time with occasional plateaus and temporary, minor improvements, there are no distinct relapses or remissions. About 10 percent of people with MS are diagnosed with PPMS.

Progressive-relapsing MS (PRMS)
PRMS — the least common of the four disease courses — is characterized by steadily progressing disease from the beginning and occasional exacerbations along the way. People with this form of MS may or may not experience some recovery following these attacks; the disease continues to progress without remissions.

 For More Information please contact the The National MS Society

Adaptive Equipment Solutions To Help Arthritic Drivers and Others

People with severe arthritis, people with Muscular Sclerosis, Muscular Dystrophy and others with disAbilities can drive again with the help of a mobility equipment expert. To find the specific product solution for your driving challenges, consult with a Physical or Occupational Therapist, Driver Rehabilitation Specialist and a Mobility dealer. Here are just a few adaptive mobility devices that they may recommend to keep you on the road.

If your hands are too weak to turn the steering wheel, there’s a solution:

  • Joystick Driving Systems allow one-hand operation of brake, accelerator and steering and only require ounces of pressure to use.

If you can’t reach controls on your dashboard or steering wheel, there’s a solution:

  • Remote Wiper, Horn, Dimmer Switch, Signals and Headlight Controls. This control relocates these functions to a more reachable location. The driver uses a switch with the hand, elbow, head or knee.

If you have leg spasms, there’s a solution:

  • Pedal Block (for gas and brake) guards against inadvertent engagement of gas or the brakes due to a spasm.

New England DisAbled Sports: Winter Activities

New Englands Disabled Sports- Winter Activities

About New England DisAbled Sports
New England DisAbled Sports is a national recognized program which provides year round adaptive sport instruction to adults and children with physical and cognitive disAbilities.

Their programs allow individuals with disAbilities to enjoy a boundary-free environment, enjoy outdoor recreation with friends and family, as well as provide access to equipment and instruction that might otherwise be unavailable.

Their Mission:
The Mission of New England DisAbled Sports is, through sports, to change lives affected by disAbilities. Download New England DisAbled Sports brochure

Their Vision:
They envision a world where disAbilities are not barriers.

Their Values:

  • They embrace volunteerism
  • They foster community
  • They strive for excellence
  • They listen to and learn from everyone
  • They nurture personal development through high-quality training and instruction
  • They strive for diversity

Winter Activities

Alpine Skiing

Mono skiing
The mono ski is a device used mainly by people with limited use (or absence) of the lower extremities. A mono ski, also known as a sit-ski, consists of a molded seat mounted on a metal frame. A shock absorber beneath the seat eases riding on uneven terrain and helps in turning by maximizing ski-snow contact. Modern mono skis interface with a single, ordinary alpine ski by means of a “ski foot,” a metal or plastic block in the shape of a boot sole that clicks into the ski’s binding. A mono skier use outriggers for stability; an outrigger resembles a forearm crutch with a short ski on the bottom. People new to mono-skiing are often surprised to see how much terrain is skiable in a mono ski; advanced mono skiers can be found not only carving turns on groomed runs but also skiing moguls, terrain parks, race courses, glades and even backcountry terrain—in short, wherever stand-up skiers can go.

Bi-skiing
A bi-ski is a sit ski with a can be skied independently like the mono-ski with hand-held outriggers, or can be skied with the assistance of an instructor using stabilizing outriggers and tethers. The skier moves his or her head, shoulders or hand-held outriggers to turn the bi-ski. The bi-ski has a lift mechanism for getting onto a chairlift. It can also be used to accustom a new sit-skier to the snow before moving to a mono-ski. Bi-skis are used by people with upper and lower limb impairments and with poor balance. People with these impairments might bi-ski:

  • Cerebral palsy
  • Multiple sclerosis
  • Muscular dystrophy
  • Amputees
  • Spinal cord injury
  • Severe epilepsy
  • Spinal bifida
  • Severe balance impairment

Outriggers are metal elbow crutches with the tip section of a ski pivoted on the bottom of the crutch. Some outriggers have adjustable brakes attached to the back edge of the ski to give some speed control. Outriggers are used to aid balance and/or to give support. Outriggers are used by mono-skiers, bi-skiers and standing skiers needing aid with balance.

3-Track & 4-Track skiing
3 track skiing is defined as skiing on one ski with outriggers to maintain balance. The student is able to stand on one ski and maintain dynamic balance with the assistance of outriggers (poles). 4 track skiing is very similar to 3 track but the skier has 2 feet on skies, rather than one.

Visually Impaired
Alpine (downhill) skiing is one of the rare opportunities available that allows the blind individual to move freely at speed through time and space. It provides the opportunity to embrace and commune with the primal force of gravity, thus experiencing the sheer exhilaration of controlled mass in motion, in a physically independent setting.

For those with Visual Impairment, a sighted Guide is needed. For lesser impairment the guide may simply need to ski a short distance in front of the skier to show the way. Skiers with greater vision loss or who are totally blind will generally ski using a headset arrangement to give audible instruction.

Snowboarding
Snowboarding has become very popular with New England DisAbled Sports students. People with cognitive or physical disAbilities are able to participate and experience the thrills of riding the mountain. The number of snowboarding lessons increases each year as the sport grows in popularity within our community. New England DisAbled Sports offers ski and snowboard lessons daily throughout the winter season.

Snowshoeing
Come explore the snow trails and fresh air of the mountains covered in snow while snowshoeing. Enjoy a winter hike in the woods from the more stable base of snowshoes. Take in peaceful scenery while working to improve your physical fitness level, balance and spatial awareness. You’ll love it!

Winter Biathlon
A seemingly unlikely combination of events – one is an aerobic activity (skiing or running) which requires strength, speed and endurance; the other is a passive activity (shooting) which requires concentration and a steady hand (difficult after you’ve been skiing, running or walking all out!).

 

Enabled By Design

Enabled by Design is a social business run on a not-for-profit basis for the benefit of its community.

It’s all about people-powered products and services:
Enabled by Design is a social business and community of people who are passionate about design for all. They believe that a good design can support people to live as independently as possible, by helping to make day-to-day tasks a little bit easier and in turn more manageable.

Enabled by Design’s work focuses on doing the following:

  • They provide their community with a space to share and talk about independent living products and services that are already available on the market, and to look at how they could be improved.
  • They are interested in exploring how people can “hack” or modify things to make them more accessible and easier to use.
  • They are working to develop relationships with designers, so that their community can help to improve the designs of the future with the aim of mainstreaming accessibility.

Enabled by Design was inspired by co-founder Denise Stephens’ experiences following her diagnosis of multiple sclerosis (MS) in 2003. Having suffered a series of disabling relapses and hospital admissions, Denise was assessed by an occupational therapist (OT) and given a range of assistive equipment to help her to be as independent as possible. Although this equipment made a huge difference to her life, she became frustrated as her home started to look more and more like a hospital. But Denise had an idea…

In April 2008, Enabled by Design was chosen to take part in the first ever Social Innovation Camp. A weekend long competition, Social Innovation Camp brings together people with ideas of how to solve specific social issues, with web developers, designers and those with business expertise to develop online solutions to real world challenges. At the end of the weekend after a Dragons’ Den-style pitching competition, Enabled by Design was awarded first prize as the ‘project with most potential’.

Since then Enabled by Design has been chosen to be part of the independent living stream of the Innovation Exchange’s Next Practice Programme, as well as a Level 1 and Level 2 Better Net UnLtd (Foundation for Social Entrepreneurs) award winner.

Denise and her co-founder, Dominic Campbell (also founder of government consultancy and social innovation incubator FutureGov), continue to work hard to spread the word about Enabled by Design and its goals, building a diverse community of people with an active interest in accessibility and design that supports independent living.

Multiple Sclerosis Awareness

Multiple Sclerosis Awareness Week is March 3-9, 2014.
Multiple sclerosis destroys connections. So it’s only fitting that connections would be its greatest enemy. As individuals who care about someone affected by MS, the connections we create can become more powerful than the connections MS destroys.
Share your connections here

MS is a Disease of the Immune System

MS is a disease that involves an immune system attack against the central nervous system (brain, spinal cord, and optic nerves). The disease is thought to be triggered in a genetically susceptible individual by a combination of one or more environmental factors. Although MS is thought by some scientists to be an autoimmune disease, others disagree strongly because the specific target of the immune attack in MS has not yet been identified. For this reason, MS is referred to as an immune-mediated disease.

As part of the immune attack on the central nervous system, myelin (the fatty substance that surrounds and protects the nerve fibers in the central nervous system) is damaged, as well as the nerve fibers themselves. The damaged myelin forms scar tissue (sclerosis), which gives the disease its name. When any part of the myelin sheath or nerve fiber is damaged or destroyed, nerve impulses traveling to and from the brain and spinal cord are distorted or interrupted, producing the variety of symptoms that can occur.

Most people with MS learn to cope with the disease and continue to lead satisfying, productive lives.

The Four Courses of MS
People with MS can typically experience one of four disease courses, each of which might be mild, moderate, or severe.

  • Relapsing-Remitting MS
    People with this type of MS experience clearly defined attacks of worsening neurologic function. These attacks—which are called relapses, flare-ups, or exacerbations —are followed by partial or complete recovery periods (remissions), during which no disease progression occurs. Approximately 85% of people are initially diagnosed with relapsing-remitting MS.
  • Primary-Progressive MS
    This disease course is characterized by slowly worsening neurologic function from the beginning—with no distinct relapses or remissions. The rate of progression may vary over time, with occasional plateaus and temporary minor improvements. Approximately 10% of people are diagnosed with primary-progressive MS.
  • Secondary-Progressive MS
    Following an initial period of relapsing-remitting MS, many people develop a secondary-progressive disease course in which the disease worsens more steadily, with or without occasional flare-ups, minor recoveries (remissions), or plateaus. Before the disease-modifying medications became available, approximately 50% of people with relapsing-remitting MS developed this form of the disease within 10 years. Long-term data are not yet available to determine if treatment significantly delays this transition.
  • Progressive-Relapsing MS
    In this relatively rare course of MS (5%), people experience steadily worsening disease from the beginning, but with clear attacks of worsening neurologic function along the way. They may or may not experience some recovery following these relapses, but the disease continues to progress without remissions.

Cognitive Impairment in Multiple Sclerosis

Cognitive Impairment in Multiple Sclerosis

A Forgotten Disability Remembered

Unknown

By Kristen Rahn, Ph.D., Barbara Slusher, M.B.A., Ph.D., and Adam Kaplin, M.D., Ph.D.

Editor’s note: Physicians first noted the presence of cognitive impairment in patients with multiple sclerosis (MS) more than 160 years ago, yet it took clinicians until 2001 to codify a standard test to measure cognitive function. We now know that cognitive impairment occurs in up to 65 percent of people with MS and usually lessens their ability to remember previously learned information. So far, trials of drugs formulated to treat cognitive impairment have failed, but the authors remain optimistic that new approaches to diagnosis and drug development could lead to effective therapies in the future.

Multiple sclerosis (MS) is a disease of the central nervous system (CNS) in which the immune system, normally charged with fighting off invading organisms, attacks the body’s myelin sheaths, the protective insulation that envelops neurons and facilitates high-speed neuronal communication. Without myelin to assist and protect neurons, the brain and spinal cord signals that permit us to interact with our environment malfunction. Neurons in the brain can be compared to the electrical wires of a house. Both are wrapped in protective insulation—neurons in myelin and electrical wires in rubber—to protect the integrity of their structures. In a way similar to how lights flicker when there is erratic signaling or fail to turn on when their wires rust and break, MS patients often experience weakness, loss of coordination, and neuropathic pain due to erratic neural signaling. They may also experience paralysis when their neurons and myelin sheaths are damaged beyond repair.

Depending on the extent and location of damage in the CNS, patients with MS may experience a wide variety of symptoms. The most commonly reported symptoms at the time of diagnosis are blurred vision, tingling and/or numbness, and loss of coordination. As the disease progresses, usually with a series of acute immune attacks and a late-stage steady march of function loss, patients with MS commonly experience fatigue, spasticity, difficulty walking, and cognitive impairment. Before 1993 there were no approved treatments of MS. Today, eight of the nine FDA-approved disease-modifying treatments are designed to reduce the frequency of clinical exacerbations in MS, and one is approved to improve walking ability. None, however, target the cognitive impairment often seen in people who have MS.

Cognitive Impairment in MS: An Overview

Although Jean-Martin Charcot is credited with providing a comprehensive description of MS, reports of both MS and comorbid cognitive impairment precede Charcot’s 1868 lectures. Dr. Friedrich von Frerichs first cited MS-related cognitive impairment in 1849, 25 years after the disease’s initial clinical description. Despite multiple early accounts of MS as a disease affecting cognition, reports on the incidence of cognitive impairment in patients with MS were mixed over the following century. While some late 19th and early 20th century physicians recognized deterioration of cognitive faculties in more than half of their MS patients, others reported that only two percent of their patients with MS experienced blunted intellectual function. Discrepancies in these figures are probably due to the fact that the majority of neurologists did not ask patients with MS about their cognitive function, and those neurologists who did inquire had inconsistent means of measuring cognitive function.

The Minimal Assessment of Cognitive Function in Multiple Sclerosis (MACFIMS) battery—a seven-test, 90-minute assessment of word fluency, visuospatial ability, learning, memory, processing, and executive function (cognitive skills required to unite learning and memory with behavior)—was not established until 2001. The recent development of improved diagnostic tests for cognitive function has allowed researchers to reach a general consensus: Cognitive impairment is a debilitating and widespread comorbidity of MS. Today physicians recognize that MS affects more than 600,000 people in the United States and more than 2 million people worldwide, and 40 to 65 percent of these patients experience some degree of cognitive impairment.

Cognitive impairment substantially impacts the lives of patients with MS and their families. Half to three-quarters of people with MS are unemployed within 10 years of diagnosis. Cognitive impairment is the leading predictor of occupational disability, while physical disability, age, sex, and education contribute less than 15 percent to the likelihood of being employed. Patients with impaired cognition participate in social activities less frequently. Cognitive impairment due to MS may also place significant additional strain on the patient’s caregiver, who must help the patient combat intellectual, social, and occupational disabilities.

The Affected Cognitive Processes

Overt dementia in MS is rare. Most cases of cognitive impairment in MS are relatively less severe than those observed in classically dementing neurological disorders, such as Alzheimer’s disease, in which the patient loses memory of previous experiences and is unable to respond properly to environmental stimuli. However, cognitive impairment in MS can be extremely debilitating, with substantial negative impacts on daily living.

While some researchers conclude that patients with MS have trouble initially committing information to memory, the majority find that most patients have some difficulty remembering information learned in the past. In a study of 426 patients with MS, 66 percent of patients had deficits in at least one recall task, while only 14 percent had encoding impairments (difficulties making new memories).6 The encoding difficulties could be due to decreased processing speed or the inability to make sense of incoming information, both of which are very difficult to measure without an extensive battery of neurocognitive tests.

People with MS also frequently experience compromised attention, and performance on tasks requiring sustained attention can reveal deficits in patients with mild to moderate cognitive impairment. Additionally, it might be difficult for a person with MS to remember information required to complete a task if other distractions are present—a considerable impairment in our multitasking society.

Because the amount of CNS damage and the locations of lesions in the brain vary among patients, cognitive impairment is a somewhat heterogeneous comorbidity of MS. However, studying the cognitive facilities most commonly affected in patients with MS can help us gain insight into effective coping strategies and reveal areas of the brain and signaling pathways that might be logical therapeutic targets. This has important implications for managing and compensating for the daily problems that cognitive impairment causes.

Risk Factors for Cognitive Impairment

Although there are no predictors of which patients will suffer MS-related cognitive deficits, disease duration and subtype, race, sex, and cognitive reserve may all play a role.

There are four subtypes of MS, defined by disease progression. Relapsing-remitting MS (RR-MS) is the most common; this subtype is the initial diagnosis of approximately 85 percent of all people with MS. In RR-MS, patients experience flare-ups of disease symptoms for a period of time, followed by a complete recovery or remission. The majority of patients diagnosed with RR-MS develop secondary-progressive MS (SP-MS) within 10 to 20 years. In SP-MS, as in RR-MS, patients experience flare-ups or relapses of disease symptoms, but there is a steady increase in disease severity between the relapses. The second most common subtype diagnosed at initial presentation is primary-progressive MS (PP-MS), in which a patient experiences a steady increase in symptom severity from the time of disease onset. The final and most rare subtype of MS, progressive-relapsing MS (PR-MS), involves intermittent relapses punctuating a steady progression of the disease. While patients with progressive subtypes of MS are more likely to experience cognitive impairment in general, further studies of patients with PP-MS and PR-MS are needed. Earlier onset of MS increases a patient’s chance of developing MS-related cognitive decline.

Although MS disease incidence is highest in populations from the northern United States, northern Europe, Canada, New Zealand, and southern Australia, people from all countries and of all races have been diagnosed with the disease. Race plays a role in disease pathogenesis and severity. For example, Caucasians have delayed symptom onset compared to Latin-American and African-American patients. It is possible that because clinical manifestations are more severe in African-American patients, the cognitive findings may be part of what is overall a more aggressive disease course. Race also affects MS’ impact on cognition: Adult African-American patients with MS develop cognitive deficits earlier in the disease course compared to adult Caucasian patients. This difference is also observed in pediatric MS patients. A 2010 study from the University of Alabama at Birmingham reported that African-American children affected by pediatric-onset MS performed worse on tests of complex attention and language compared to Caucasian children with MS matched by age, disease severity, gender, and socioeconomic status. A better understanding of the race-based differences in disease characteristics could help physicians tailor treatments to ensure optimal responses.

MS occurs in women more frequently than it does in men; ratios of incidence range from 2:1 to 3:1, depending on the geographical region. Despite the elevated frequency in women, studies have shown that disease severity is typically higher and progression more rapid in men compared to women. Additionally, the incidence and severity of cognitive deficits are higher in men.

Intelligence and education history contribute to the formation of cognitive reserve, which affects the brain’s resilience in the presence of injury. Previous studies in Alzheimer’s disease (AD) have shown that individuals with higher cognitive reserve are less likely to develop dementia. As with AD, MS patients with high levels of cognitive reserve are less likely to experience cognitive impairment. A study following patients with MS over a five-year period showed that those with a high cognitive reserve at baseline experienced no loss of cognitive function, while those who started with a low cognitive reserve suffered a significant cognitive decline.

The Roles of Depression and Physical Disability

Inflammation, neuronal degeneration, and lesion formation are likely among the causes of cognitive impairment in people with MS. Gray matter (neuron) loss in the brain, specifically in the cerebral cortex (the thin layer of cells that makes up the outer layer of the brain) and the thalamus (the relay station between the brain and the spinal cord, through which nearly all motor and sensory information travels), correlates with cognitive impairment. However, some patients with extensive brain lesions remain cognitively intact, while others with a low lesion load experience cognitive impairment. Additionally, the patterns of deficits in patients affected by cognitive impairment vary widely. For example, some patients experience relatively subtle cognitive problems, such as word-finding difficulty, while others are so debilitated that they cannot navigate roads in their own neighborhood or remember important phone numbers that used to be familiar to them. While the exact causes of cognitive impairment in MS are unknown, two factors often further impair cognitive performance in patients with the disease: depression and physical disability.

Depression often plagues people with MS-related cognitive impairment. The lifetime prevalence of depression within the general population is approximately 20 percent, while the prevalence in patients with MS is around 50 percent. A host of studies have linked depression in MS to impairments in learning, memory, processing speed, and executive function. The lesion location in an MS patient can affect depressive symptoms, as patients with brain lesions are more likely to experience depression compared to patients with spinal cord lesions. Furthermore, lesions in the temporal lobe elevate a patient’s likelihood of experiencing depression compared to lesions in other areas of the brain. Temporal lobe lesions could be the common thread linking depression and cognitive impairment, as brain structures involved in learning and memory function, such as the amygdala and the hippocampus, are located in the temporal lobes.

Depression is predominantly caused by inflammation in the brain, which is a hallmark of MS. Although researchers do not fully understand the pathogenesis of MS, they think inflammation precedes neuron death and myelin loss. One might hypothesize that depression would arise due to early inflammation, to be followed by degeneration of neurons and lesion development, leading to cognitive impairment.

Physical and cognitive effects of MS can occur separately, but there are relationships between them. About 10 percent of patients suffer from benign MS (that is, their score is two or below on the Expanded Disability Status Scale for at least 10 years of disease duration), in which physical disease symptoms are absent. Approximately 20 percent of patients with clinically benign MS, with a relatively mild disease course and accumulation of little disability over time, have cognitive impairment, while more than half of all MS patients suffer from cognitive impairment.

The relationships among psychological factors, fatigue, physical disability, and cognitive impairment raise some very important questions: Which of these aspects of disease arise first, and how do they interact? Does depression lead to fatigue, lowered motivation, and decreased medication compliance, thus compromising physical ability? Does physical disability or cognitive impairment make a patient more likely to become depressed and fatigued? A better understanding of disease pathogenesis and improved diagnostic tools will help researchers answer these important questions in the future.

Current Treatment Options

Researchers recently evaluated four pharmacological interventions intended to reverse cognitive impairment in patients with MS in large-scale (n > 40), double-blind, placebo-controlled clinical studies. Researchers likely chose the compounds—ginkgo biloba, donepezil, rivastigmine, and memantine—due to anecdotal evidence and clinical success in treating memory impairment in patients with Alzheimer’s disease (AD). Two of these drugs, donepezil and rivastigmine, are designed to increase brain levels of acetylcholine (ACh), a neurotransmitter (or chemical messenger) that facilitates learning and memory processes. The third, memantine, which prevents abnormal activation of signaling pathways between neurons in the brain, has demonstrated success in treating early AD. AD studies using ginkgo biloba, a plant often used in traditional Chinese medicine and reported to affect neurotransmitter signaling and neuroprotection, have shown mixed results; some demonstrate cognitive-enhancing effects, while others show no effect compared to placebo. Unfortunately none of these compounds demonstrated beneficial, reproducible improvements in cognitive function in clinical trials with MS.

Cognitive rehabilitation therapy is a nonpharmacological method of improving a specific cognitive skill through practice and training. The brain is a dynamic organ, and practicing a specific cognitive task strengthens the communication between neurons required for that task. Results from trials focusing on cognitive rehabilitation in MS are mixed. Researchers did find, however, that neurocognitive rehabilitation alleviates fatigue in patients with MS, and this also might help restore cognitive facilities such as attention span and working (short-term) memory.

If a patient has irreversible cognitive deficits, the focus shifts from restoration to compensation. Coping strategies might be both emotion-focused and problem-focused. Emotion-focused strategies, which help a patient regulate the emotional consequences of cognitive deficits, include accepting the deficit and obtaining social support from peers or trained professionals. Problem-focused strategies alleviate some of the stress that cognitive impairment places on the individual through solutions to specific problems, such as using a tape recorder in meetings or lectures to aid in recall. A 2010 study demonstrated that patients with MS are unlikely to use positive coping strategies. Instead, many avoid situations in which their cognitive impairment might be evident or obvious to others. This is particularly true if the patient had deficits in attention and executive functioning, which indicates that educating patients with MS on the benefits of positive coping strategies is an important and unmet need.

In addition, researchers found that physical activity affects cognition in some patients with MS. Reported benefits of yoga in populations of patients with MS include reduced fatigue and improved attention. A 2011 study demonstrated a positive correlation between physical activity and cognitive processing speed in ambulatory patients with MS. While definite conclusions cannot be drawn from these studies, the positive association between physical activity and cognitive function (which also has been demonstrated in healthy and AD populations) suggests that physical activity might be an efficacious nonpharmacological treatment for cognitive impairment in MS.

The Role of Imaging

The search for a marker or specific cause of cognitive impairment in patients with MS has proven unsuccessful, and not knowing the exact mechanism(s) makes it extremely difficult to develop a treatment. The advancement of brain-imaging techniques and the development of more sophisticated experimental disease models have allowed for a more thorough understanding of pathogenesis in MS, but the exact cause or trigger is still unknown. Less than five years ago, researchers identified a cell that significantly contributes to MS development and progression. These T helper 17 immune cells are thought to contribute to CNS inflammation and are located within the brain lesions of people with MS. Despite recent advances, much work is still required to understand the cause of MS, the triggers for disease pathogenesis, and the mechanisms behind loss of myelin and neuronal degeneration.

Before the advent of magnetic resonance imaging (MRI) in the 1980s and computed tomography (CT) scans in the 1970s, only extremely crude brain-imaging techniques (such as plain X-rays) were available. Makeshift temperature tests were commonly used to assist in making an MS diagnosis, as uninsulated neurons conduct poorly at elevated temperatures. Thus, in bygone eras, many patients who presented with symptoms suggestive of MS were told to go home and get into a hot bathtub, and if their condition worsened significantly, then the diagnosis was confirmed as well as possible. Thankfully, diagnostic tools in neurology have improved, and techniques such as MRI can safely and accurately aid in diagnosing MS.

MRI uses a powerful magnet without harmful radiation to view successive sections of the brain and spinal cord with remarkable detail in any desired plane, much as one would slice a loaf of bread or a vegetable. Areas of the brain that appear “bright” or “hyperintense” on MRI images, called T2 hyperintense areas or simply T2 lesions, are thought to correspond to regions of inflammation, swelling, or injury. Dye is injected into the bloodstream of a patient, and leakage of dye into the brain indicates disruption of the protective barrier between the brain and the blood. This disruption occurs in patients with MS due to active inflammation, and immune cells rush into the brain to do battle with what is mistakenly perceived as an adversary.

MRI has become integral to the initial diagnostic workup of patients with MS. However, when it comes to the prediction of clinical status, course, or outcome, MRI has proven to be a surprisingly poor indicator. Perhaps the injury that results in clinical symptoms happens in a more general way throughout the brain, and the number of hyperintense lesions seen on MRI is not directly related to the severity of a patient’s deficits. Alternatively, it is possible that the brain is particularly good at routing neural impulses around regions actively under attack by the immune system. Although MRI highlights sites of inflammation, it does not show the compensatory mechanisms mediated by brain changes in signal routing or electrochemical boosting. Nowhere has the lack of a correlation between MRI findings and disability been more pronounced than in the poor prediction of cognitive impairment. Whatever the cause, the clinical-MRI paradox (the lack of correlation between findings on MRI and the level of clinical disability) has played a role in slowing the development of novel and potent therapies, especially those targeting cognitive preservation or improvement.

Researchers have investigated a number of related neuroimaging techniques in an effort to overcome the limitations of standard MRI in predicting cognitive performance. General measurements of either whole-brain or regional atrophy (brain shrinkage), the final outcome of demyelination and neuronal injury throughout the brain, correlate with cognitive impairment better than MRI imaging does. Two other techniques that indicate tissue damage have been used with some preliminary success in correlating with cognitive impairment in MS: magnetization transfer imaging, which measures how charged aspects of water interact with charges at the molecular level in the brain, and diffusion tensor imaging, which measures how water diffuses through the brain.

We recently had preliminary success, which is not yet published, in correlating the cognitive function of human MS patients with magnetic resonance spectroscopy (MRS). Unlike MRI, which determines the structural integrity of the brain based on the water distribution, MRS measures chemical compounds in specific areas of the brain. Since the brain’s hippocampus has a prominent role in learning and memory functions, we used MRS to investigate the chemistry of this brain region in people with MS. We found very strong positive correlations between cognitive function and levels of N-acetylaspartylglutamate (NAAG), an abundant signaling molecule in the brain. Specifically, higher NAAG levels were correlated with improved cognitive function. Although human studies of this chemical await the development of a drug that safely elevates NAAG levels in humans, we found that elevating the levels of NAAG in an animal model of MS resulted in a two-fold improvement in learning and memory functions compared to untreated animals. There may be hope on the horizon for the development of pharmacological interventions for MS cognitive impairment.

Improving Treatment Development

Today’s method of drug development for cognitive impairment in patients with MS—evaluating drugs that have improved cognition related to other neurodegenerative diseases—does not work. While this approach was the obvious first step, other methodologies must be developed if effective treatments are to be found. A promising new avenue for cognition-enhancing drug development in MS involves the use of the animal model experimental autoimmune encephalomyelitis (EAE). EAE is not a novel model of disease; since 1933, it has helped scientists to learn about the disease process and to test treatments to improve physical symptoms. In 2010, researchers demonstrated that this model of MS, in addition to mimicking the disease with regard to lesion formation and induction of physical disability, also causes cognitive impairment. This was the first study that measured cognitive function in the EAE model, and it provides a valuable new method for the evaluation of novel treatments for MS-related cognitive impairment.

The awareness of cognitive impairment in MS is improving among physicians, researchers, and patients. Although past efforts to develop treatments for cognitive impairment in MS have largely been minimal or ineffective, improved research tools and imaging modalities and the emergence of more studies focusing on this problem are causes for optimism.

Diagnosing Multiple Sclerosis – What Makes It So Difficult?

Know the signs and symptoms your doctor will look for in examining you for multiple sclerosis.

Diagnosing Multiple Sclerosis - What Makes It So Difficult?

Besides the fact that no single test can detect the disease, MS symptoms can mimic those of a number of other conditions, and they can change over time. Symptoms can also vary from person to person — and from day to day in the same person.

Here’s what you should know.

Symptoms of Multiple Sclerosis

Some early symptoms of MS are:

  • Numbness or tingling in parts of the body, usually an arm or leg
  • Unexplained weakness, dizziness and fatigue
  • Blurry vision, double vision or blindness

Other symptoms include:

  • Muscle spasms
  • Impairment of the sense of touch and the ability to feel temperature changes and pain
  • Problems with balance and coordination
  • Tremor
  • Slurred speech
  • Bladder and bowel problems
  • Sexual problems
  • Depression
  • Mild difficulties with concentration, attention, memory and poor judgment
  • Moderate to severe pain
  • Heat sensitivity

To diagnose the disease, healthcare providers use a number of tools and tests that often help rule out other possible causes.

Multiple Sclerosis Diagnosis: Tools and Tests

  • Medical history: Doctors ask for details about personal health history and family health history and also question patients carefully about symptoms, their duration and their onset.
  • Physical examination: A physical exam will most likely include tests to determine the health of nerves and muscles. Doctors may look for weakness in specific parts of the body, uncoordinated eye movements, and problems with balance, vision, and speech.
  • Magnetic resonance imaging (MRI): If doctors possibly suspect MS after a physical exam, they will probably order additional diagnostic tests, starting with an MRI. During an MRI, a patient’s body is placed within a magnetic field and scanned by radio waves. This combination creates detailed pictures of the part of the body being examined. In MS, doctors take scans of the brain or spine depending on the symptoms and physical exam. The resulting pictures can show patches, or scars, in the central nervous system where myelin has been destroyed. These areas are referred to as plaques. Since other disorders can cause these patches, an MRI scan can’t provide definitive evidence of multiple sclerosis. But doctors rely primarily on MRIs to see evidence of the disease. MRIs are also important in tracking the progress of the disease, and doctors may order new tests from time to time to monitor a patient’s condition. Researchers also use the test to see if experimental treatmentshave an effect on scarring in the central nervous system.
  • Cerebrospinal fluid collection (CSF collection): If the diagnosis is still not clear, doctors may take a sample of spinal fluid. Patients typically lie on their sides with their knees bent up. The doctor administers a local anesthetic in the lower spine and, using another needle, takes out a sample of the spinal fluid. Doctors examine the sample for abnormalities associated with MS, such as increases in white blood cells and high levels of an antibody called immunoglobulin G.
  • Evoked response tests (ERTs): These electronic tests, sometimes called evoked potential tests, measure the speed of brain connections. The most common ERTs are the visual evoked response test (VER), the brainstem auditory evoked response test (BAER) and the sensory evoked response test (SER). In each, doctors attach wires to a patient’s scalp. Then, depending on the test, they give patients visual, auditory, or sensory stimulation. These stimuli are a checkerboard pattern patients see on a monitor, a series of clicks they hear through earphones, or short electrical impulses they feel on an arm or leg. The tests measure the speed of visual, hearing, and sensory pathways and can detect damaged areas in the brain.

Multiple sclerosis study reveals how killer T cells learn to recognize nerve fiber insulators

Misguided killer T cells may be the missing link in sustained tissue damage in the brains and spines of people with multiple sclerosis, findings from the University of Washington reveal.  Cytoxic T cells, also known as CD8+ T cells, are white blood cells that normally are in the body’s arsenal to fight disease.

killer-T-cell2

Multiple sclerosis is characterized by inflamed lesions that damage the insulation surrounding nerve fibers and destroy the axons, electrical impulse conductors that look like long, branching projections.  Affected nerves fail to transmit signals effectively.

Intriguingly, the UW study, published this week in Nature Immunology, also raises the possibility that misdirected killer T cells might at other times act protectively and not add to lesion formation.  Instead they might retaliate against the cells that tried to make them mistake the wrappings around nerve endings as dangerous.

UW Immunology chair Joan Goverman studies the cellular mechanisms behind autoimmune disorders of the central nervous system.

Scientists Qingyong Ji and Luca Castelli performed the research with Joan Goverman, UW professor and chair of immunology.  Goverman is noted for her work on the cells involved in autoimmune disorders of the central nervous system and on laboratory models of multiple sclerosis.

Multiple sclerosis generally first appears between ages 20 to 40.  It is believed to stem from corruption of the body’s normal defense against pathogens, so that it now attacks itself.  For reasons not yet known, the immune system, which wards off cancer and infection, is provoked to vandalize the myelin sheath around nerve cells. The myelin sheath resembles the coating on an electrical wire.  When it frays, nerve impulses are impaired.

Depending on which nerves are harmed, vision problems, an inability to walk, or other debilitating symptoms may arise.  Sometimes the lesions heal partially or temporarily, leading to a see-saw of remissions and flare ups.  In other cases, nerve damage is unrelenting.

The myelin sheaths on nerve cell projections are fashioned by support cells called oligodendrocytes.  Newborn’s brains contain just a few sections with myelinated nerve cells. An adult’s brains cells are not fully myelinated until age 25 to 30.

For T cells to recognize proteins from a pathogen, a myelin sheath or any source, other cells must break the desired proteins into small pieces, called peptides, and then present the peptides in a specific molecular package to the T cells.  Scientists had previously determined which cells present pieces of a myelin protein to a type of T cell involved in the pathology of multiple sclerosis called a CD4+ T cell.  Before the current study, no cells had yet been found that present myelin protein to CD8+ T cells.

Scientists strongly suspect that CD8+ T cells, whose job is to kill other cells, play an important role in the myelin-damage of multiple sclerosis.  In experimental autoimmune encephalitis, which is an animal model of  multiple sclerosis in humans, CD4+T cells have a significant part in the inflammatory response.  However, scientists observed that, in acute and chronic multiple sclerosis lesions, CD8+T cells actually outnumber CD4+ T cells and their numbers correlate with the extent of damage to nerve cell projections.  Other studies suggest the opposite: that CD8+T cells may tone down the myelin attack.

The differing observations pointed to a conflicting role for CD8 + T cells in exacerbating or ameliorating episodes of multiple sclerosis. Still, how CD8+T cells actually contributed to regulating the autoimmune response in the central nervous system, for better or worse, was poorly understood.

TIP dendritic cells, stained to show their physical features.

Goverman and her team showed for the first time that naive CD8+ T cells were activated and turned into myelin-recognizing cells by special cells called Tip-dendritic cells. These cells are derived from a type of inflammatory white blood cell that accumulates in the brain and the spinal cord during experimental autoimmune encephalitis originally mediated by CD4+ T cells. The membrane folds and protrusions of mature dendritic cells often look like branched tentacles or cupped petals well-suited to probing the surroundings.

The researchers proposed that the Tip dendritic cells can not only engulf myelin debris or dead oligodendrocytes and then present myelin peptides to CD4 + T cells, they also have the unusual ability to load a myelin peptide onto a specific type of molecule that also presents it to CD8+ T cells.  In this way, the Tip dendritic cells can spread the immune response from CD4+ T cells to CD8+ T cells. This presentation enables CD8+ T cells to recognize myelin protein segments from oligodendrocytes, the cells that form the myelin sheath.  The phenomenon establishes a second-wave of autoimmune reactivity in which the CD8+ T cells respond to the presence of oligodendrocytes by splitting them open and spilling their contents.

“Our findings are consistent,” the researchers said, “with the critical role of dendritic cells in promoting inflammation in autoimmune diseases of the central nervous system.”  They mentioned that mature dendritic cells might possibly wait in the blood vessels of normal brain tissue to activate T-cells that have infiltrated the blood/brain barrier.

The oligodendrocytes, under the inflammatory situation of experimental autoimmune encephalitis, also present peptides that elicit an immune response from CD8+T cells. Under healthy conditions, oligodendrocytes wouldn’t do this.

The researchers proposed that myelin-specific CD8+T cells might play a role in the ongoing destruction of nerve-cell endings in “slow burning” multiple sclerosis lesions. A drop in inflammation accompanied by an increased degeneration of axons (electrical impulse-conducting structures) coincides with multiple sclerosis leaving the relapsing-remitting stage of disease and entering a more progressive state.

Medical scientists are studying the roles of a variety of immune cells in multiple sclerosis in the hopes of discovering pathways that could be therapeutic targets to prevent or control the disease, or to find ways to harness the body’s own protective mechanisms.  This could lead to highly specific treatments that might avoid the unpleasant or dangerous side effects of generalized immunosuppressants like corticosteroids or methotrexate.

The study was funding by grants AI072737 and AI073748 from the National Institutes of Health. The authors declared no competing financial interests.

Shrinkage of Brain Region May Signal Onset of Multiple Sclerosis

Atrophy of a key brain area may become a new biomarker to predict the onset of multiple sclerosis, researchers say. If so, that would add to established criteria such as the presence of brain lesions to diagnose the progressive, incurable disorder.

 Shrinkage of Brain Region May Signal Onset of Multiple Sclerosis

Using special MRI images, scientists from three continents found that the thalamus — which acts as a “relay center” for nervous-system signals — had atrophied in nearly 43 percent of patients who had suffered an initial neurological episode that often comes before a multiple sclerosis (MS) diagnosis.

“The telling appearance of lesions, which is a hallmark of the disease, is only part of the pathology,” said study author Dr. Robert Zivadinov, director of the Buffalo Neuroimaging Analysis Center at the University of Buffalo, in New York. “Our finding is more related to [initiating] clinical trials, to using thalamic volume as a new biomarker for testing and treatment, and to increasing awareness among investigators that this disease is more than just about lesions.”

The study was published online April 23 in the journalRadiology.

Believed to be an autoimmune disorder, MS results in lesions on the brain and spinal cord that disrupt nerve signals to various parts of the body. Symptoms, which can come and go, include numbness, tingling, vision disturbances, problems walking, dizziness, and bowel and bladder problems.

More than 2 million people live with MS worldwide, according to the Multiple Sclerosis Foundation.

For the new research, Zivadinov and his team used contrast-enhanced MRI images to evaluate more than 200 patients who had suffered an initial, short-term neurological episode known as clinically isolated syndrome. About 85 percent people who have one of these episodes will go on to be diagnosed with MS within two years, and the diagnosis also relies on a second attack and the detection of new or enlarging lesions using MRI.

The study performed follow-up scans on patients at six months, one year and two years. It found that decreases in the size of the thalamus were independently associated with the development of clinically definite MS, along with an increased volume in another part of the brain known as the lateral ventricles.

The findings suggest shrinkage of the thalamus could become a biomarker for MS because it’s detectable at a very early stage, Zivadinov said.

“What’s triggering this and how it’s connected with the thalamus should be explored,” he said, “but … that this research is indicating that the thalamus is profoundly affected so early on leads us to focus more on those regions of the brain.”

Dr. Gary Birnbaum, director of the MS Treatment and Research Center at the Minneapolis Clinic of Neurology, said he thinks the study highlights the concept that MS is a combination of inflammatory and degenerative processes.

But Birnbaum, who was not involved with the study, said measuring the size of the thalamus on special MRI scans is more complex than what is possible with traditional scans. He said this new finding needs to be confirmed before being useful in clinical MS diagnoses.

Setting new standards in multiple sclerosis care and research

setting new standards in multiple sclerosis care and research

Setting new standards in multiple sclerosis care and research

In the run up to the 2012 European Committee for Treatment and Research in Multiple Sclerosis (ECTRIMS) meeting in Lyon, France, two important new multiple sclerosis (MS) initiatives are making progress. The International Collaborative on Progressive MS published its agenda of research priorities in late August, while the European MS Platform (EMSP) is due to roll out the next stage of MS Nurse Professional (MS Nurse PRO), a programme to standardise training for MS nurses across Europe, in Barcelona, Spain, at the end of September. Despite taking very different approaches, these initiatives have the potential to benefit many of the estimated 2·5 million people worldwide who have MS.
About 10—15% of people with MS present with primary progressive disease and 80% of the rest develop secondary progressive MS within 20 years. But, despite relative success in the development of treatments for relapsing-remitting MS, the options for people with progressive MS remain limited and a breakthrough is desperately needed. The International Collaborative on Progressive MS, a group of researchers and representatives of MS patient societies from Europe and North America, has the ultimate goal of expediting the development of disease-modifying and symptomatic treatments. In its research agenda, the Collaborative outlines five priority areas for research: experimental models, identification and validation of therapeutic targets, strategies for proof-of-concept clinical trials, clinical outcome measures, and symptom management and rehabilitation. Working groups are now looking at how to overcome the barriers to progress in these areas, and a call to the wider MS research community to collaborate on ongoing and new projects to address these challenges is planned for 2013.
Meanwhile, MS Nurse PRO is being developed to improve care for people in Europe with MS of all types. Specialist MS nurses can be an important point of contact for patients from diagnosis onwards, and they can enable neurologists to devote more time to the patients who need it most and to research. However, in 2010, the MS-Nurse Empowering Education (MS-NEED) survey led by the EMSP identified substantial variability across Europe in the roles and training of MS nurses and in the quality and availability of nursing care. To address these disparities and provide formal recognition for MS nurses, the EMSP has developed MS Nurse PRO with input from the European Rehabilitation in MS (RIMS) network and the International Organization of Multiple Sclerosis Nurses (IOMSN), which already provides international training for MS nurses. MS Nurse PRO will be based on five core modules: epidemiology and pathophysiology, clinical presentation, diagnosis and assessment, management of MS, and patient care and support. Despite the desire for standardisation, the training will accommodate national differences in the availability of drugs and the needs of employers of MS nurses, which can include charities, health-care providers, and pharmaceutical companies. The scheme has already run a pilot in Malta, and the Spanish launch with be the first test in a language other than English; MS Nurse PRO should also be available in German, Italian, and Czech by the end of 2012 and rolled out to other European countries from 2013 onwards.
Collaboration between organisations in different countries will be crucial for both projects. Large multicentre studies will be needed to overcome at least some of the barriers identified by the International Collaborative on Progressive MS, and any eventual recommendations, such as for outcome measures and trial design, will need to be recognised and implemented internationally if they are to lead to further progress. The MS Nurse PRO curriculum is accredited by the UK Royal College of Nursing, but similar endorsement in other countries will be needed if the programme is to become a standard qualification across Europe. The results from Malta and Spain, a planned consensus paper, and a written declaration in the European Parliament calling for recognition in member states should raise awareness. Funding will also be needed to sustain MS Nurse PRO beyond the development phase, which is being supported by a pharmaceutical company. For the International Collaborative on Progressive MS, member societies and government, corporate, and private organisations have been identified as potential sources of financial support.
More information should be available on both initiatives at ECTRIMS: from the Multiple Sclerosis International Federation, one of the societies behind the International Collaborative on Progressive MS, and from the EMSP. With enough funding and collaborative will, these initiatives could be important opportunities to improve the lives of thousands of people, and we look forward to following their progress.

How typical is cognitive impairment in MS?

How typical is cognitive impairment in MS?

MS MA

Cognitive deficits are not the most typical symptoms of MS. In fact, severe cognitive impairment that makes everyday coping difficult is reported in 10 per cent of people with MS, whereas an estimated 40-50 per cent experience mild to moderate disturbances. This means that about half of those diagnosed with MS never experience cognitive impairment.

Even mild impairment may require changes in a person’s routine and habits. For example, coping at work may require extra effort and the use of aids or compensatory techniques. If cognitive deficits are not identified properly, they may be a cause for stress and misunderstanding at work and at home. They should, therefore, be recognised as early as possible, so that steps can be taken to ease the situation.

What kind of cognitive impairment is associated with MS?
The most common types of memory problems are difficulties in remembering recent events and remembering planned or necessary tasks. Some people with MS also report that it takes more time and effort to find misplaced items and to remember new information.

Some people find it difficult to concentrate for long periods of time or have trouble keeping track of what they are doing or saying when distracted or interrupted, for example, carrying on a conversation while the TV or radio is on. Moreover, many people describe feeling as though they cannot function as quickly as they could before MS.

Some people experience difficulties when planning and problem solving. People with these types of problems usually know what should be done but find it difficult to know where to begin or to work out the steps involved to achieve their goal.
People with MS may also experience difficulties in word-finding, reporting that a word or name is “on the tip of my tongue”. The person knows the word but is unable to retrieve it.

MS can lead to other types of cognitive problems. One well-known study reported that visuospatial abilities are affected in up to 19% of people with MS. However, deficits in language are less frequent. Furthermore, severe cognitive decline or dementia, such as that commonly seen in Alzheimer’s disease, is rare in MS.

Are cognitive deficits predictable and do they progress? 

It is not possible to predict from other symptoms of MS whether someone is likely to suffer from cognitive impairment or not. Cognitive problems do not seem to be related clearly to such disease variables as duration, severity or disease course. Cognitive deficits may be present during the early stages of the disease, as well as later on, in mildly or severely physically disabled patients. Cognitive impairments have no known link to any single physical symptom of MS. However, sometimes dysarthria (poorly articulated speech), ataxia (problems with co-ordination) or nystagmus (rapid involuntary eye movements) may be falsely interpreted as a sign of cognitive impairment.

It has been found that cognitive deficits are more common in people who have changes in the cerebrum than people who have changes in the cerebellum, brainstem and spinal cord alone.

Unfortunately, little information exists about the progression of cognitive impairment in MS. It has been found that cognitive performance can vary during even short follow-up periods. Recent studies show that if a person experiences some cognitive problems, worsening is possible, although the rate of progression is usually slow.

Are cognitive problems permanent?
Whereas brain lesions can result in more permanent cognitive problems, a number of factors can interfere with or impair cognition temporarily. These factors include fatigue and tiredness, emotional changes, MS relapses, physical difficulties that may require extra effort and concentration (such as unstable walking), medications and lifestyle changes, such as having to leave employment and therefore having less mental stimulation.

Living with a chronic, progressive and unpredictable disease inevitably affects a person’s mood. When people are depressed or feeling low, they may experience memory lapses or problems concentrating. Usually these difficulties are not long-lasting. Many people with MS report cognitive problems during periods of fatigue, and recent studies have shown that cognitive performance may be slowed or be less accurate when the person is experiencing fatigue. Temporary cognitive difficulties may also occur during relapses. Just as with physical symptoms, cognitive problems may be restricted to the active inflammation phases of the disease. Cognitive functioning can be affected by several factors, so it is not usually appropriate to evaluate cognition if the person is experiencing depression, a relapse or excessive stress.

Evaluating cognitive problems
Even mild cognitive impairments can cause feelings of uncertainty and fear. It is important to know that these symptoms, just as with bladder problems, or difficulty walking, are part of the disease and that there are ways to live with them.

Since realistic information can help a person to cope with a new situation, it is important that each person diagnosed with MS receives information about cognitive impairment. Cognitive problems are evaluated with a neuropsychological assessment, which includes testing and a detailed interview. The goal of neuropsychological assessment is to individually evaluate the severity and characteristics of cognitive impairment. Furthermore, an individual’s cognitive strengths can be identified and strategies to alleviate the effects of impairment can be suggested.
Not everyone necessarily requires a neuropsychological assessment. Many people can identify for themselves the individual areas that are causing problems and work out ways to deal with them. Neuropsychological assessment is important when evaluating ability to work, possibilities for re-education or driving ability. An assessment should also be performed if cognitive impairment continuously interferes with a person’s daily activities and/or social interactions.

The role of neuropsychological testing in research
Neuropsychological assessment has been employed for study purposes in evaluating the frequency, the characteristics and natural history of cognitive impairment, as well as its relationship to other disease variables. Studies on cognitive functioning in MS have been able to show the effects of cognitive impairment on employment, driving skills, personal independence, etc. Many recent studies have evaluated the effectiveness of medications and different rehabilitation methods on MS-related cognitive deficits. These kinds of studies have made it possible to develop methods to alleviate the effects of cognitive problems.

Current understanding of MS and cognitive changes

Much of our understanding of cognitive changes related to MS has come from scientific research. Here are some general statements we can make based on current knowledge in this area:
• There is little or no relationship between duration of the disease, or severity of physical symptoms, and cognitive changes.
• People with a progressive form of the disease are at a slightly greater risk of cognitive changes, although those with relapsing-remitting MS can have difficulties.
• Cognitive problems can worsen during an exacerbation and lessen with remission, although the changes in these symptoms appear to be less dramatic than those seen with physical symptoms such as walking and vision.
• Cognitive changes can and do progress like other symptoms, but the worsening appears to be slow in most cases.
Source: Multiple Sclerosis: A Guide for Families, Rosalind Kalb, Ph.D., Demos Vermande, 1998 p.24

Multiple sclerosis: Causes, incidence, and risk factors

Multiple sclerosis

national multiple sclerosis society massachusetts

MS; Demyelinating disease
Multiple sclerosis is an autoimmune disease that affects the brain and spinal cord (central nervous system).

Causes, incidence, and risk factors

Multiple sclerosis (MS) affects women more than men. The disorder is most commonly diagnosed between ages 20 and 40, but can be seen at any age.
MS is caused by damage to the myelin sheath, the protective covering that surrounds nerve cells. When this nerve covering is damaged, nerve signals slow down or stop.
The nerve damage is caused by inflammation. Inflammation occurs when the body’s own immune cells attack the nervous system. This can occur along any area of the brain, optic nerve, and spinal cord.
It is unknown what exactly causes this to happen. The most common thought is that a virus or gene defect, or both, are to blame. Environmental factors may play a role.
You are slightly more likely to get this condition if you have a family history of MS or live in an part of the world where MS is more common.

Symptoms

Symptoms vary, because the location and severity of each attack can be different. Episodes can last for days, weeks, or months. These episodes alternate with periods of reduced or no symptoms (remissions).
Fever, hot baths, sun exposure, and stress can trigger or worsen attacks.
It is common for the disease to return (relapse). However, the disease may continue to get worse without periods of remission.
Because nerves in any part of the brain or spinal cord may be damaged, patients with multiple sclerosis can have symptoms in many parts of the body.
Muscle symptoms:
  • Loss of balance
  • Muscle spasms
  • Numbness or abnormal sensation in any area
  • Problems moving arms or legs
  • Problems walking
  • Problems with coordination and making small movements
  • Tremor in one or more arms or legs
  • Weakness in one or more arms or legs
Bowel and bladder symptoms:
Eye symptoms:
Numbness, tingling, or pain
Other brain and nerve symptoms:
  • Decreased attention span, poor judgment, and memory loss
  • Difficulty reasoning and solving problems
  • Depression or feelings of sadness
  • Dizziness and balance problems
  • Hearing loss
Sexual symptoms:
Speech and swallowing symptoms:
  • Slurred or difficult-to-understand speech
  • Trouble chewing and swallowing
Fatigue is a common and bothersome symptoms as MS progresses. It is often worse in the late afternoon.

Signs and tests

Symptoms of MS may mimic those of many other nervous system disorders. The disease is diagnosed by ruling out other conditions.
People who have a form of MS called relapsing-remitting may have a history of at least two attacks, separated by a period of reduced or no symptoms.
The health care provider may suspect MS if there are decreases in the function of two different parts of the central nervous system (such as abnormal reflexes) at two different times.
A neurological exam may show reduced nerve function in one area of the body, or spread over many parts of the body. This may include:
  • Abnormal nerve reflexes
  • Decreased ability to move a part of the body
  • Decreased or abnormal sensation
  • Other loss of nervous system functions
An eye examination may show:
  • Abnormal pupil responses
  • Changes in the visual fields or eye movements
  • Decreased visual acuity
  • Problems with the inside parts of the eye
  • Rapid eye movements triggered when the eye moves
Tests to diagnose multiple sclerosis include:

Treatment

There is no known cure for multiple sclerosis at this time. However, there are therapies that may slow the disease. The goal of treatment is to control symptoms and help you maintain a normal quality of life.
Medications used to slow the progression of multiple sclerosis are taken on a long-term basis, they include:
Steroids may be used to decrease the severity of attacks.
Medications to control symptoms may include:
  • Medicines to reduce muscle spasms such as Lioresal (Baclofen), tizanidine (Zanaflex), or a benzodiazepine
  • Cholinergic medications to reduce urinary problems
  • Antidepressants for mood or behavior symptoms
  • Amantadine for fatigue
For more information see:
The following may also be helpful for people with MS:
  • Physical therapy, speech therapy, occupational therapy, and support groups
  • Assistive devices, such as wheelchairs, bed lifts, shower chairs, walkers, and wall bars
  • A planned exercise program early in the course of the disorder
  • A healthy lifestyle, with good nutrition and enough rest and relaxation
  • Avoiding fatigue, stress, temperature extremes, and illness
  • Changes in what you eat or drink if there are swallowing problems
  • Making changes around the home to prevent falls
  • Social workers or other counseling services to help you cope with the disorder and get assistance (such as Meals-on-Wheels)
For more information about living with MS, see: Multiple sclerosis – at home
Household changes to ensure safety and ease in moving around the home are often needed.

Support Groups

For additional information, see multiple sclerosis resources.

Expectations (prognosis)

The outcome varies, and is hard to predict. Although the disorder is chronic and incurable, life expectancy can be normal or almost normal. Most people with MS continue to walk and function at work with minimal disability for 20 or more years.
The following typically have the best outlook:
  • Females
  • People who were young (less than 30 years) when the disease started
  • People with infrequent attacks
  • People with a relapsing-remitting pattern
  • People who have limited disease on imaging studies
The amount of disability and discomfort depends on:
  • How often you have attacks
  • How severe they are
  • The part of the central nervous system that is affected by each attack
Most people return to normal or near-normal function between attacks. Slowly, there is greater loss of function with less improvement between attacks. Over time, many require a wheelchair to get around and have a more difficult time transferring out of the wheelchair.
Those with a support system are often able to remain in their home.

Complications

Calling your health care provider

Call your health care provider if:
  • You develop any symptoms of MS
  • Symptoms get worse, even with treatment
  • The condition deteriorates to the point where home care is no longer possible

References

  1. Calabresi P. Multiple sclerosis and demyelinating conditions of the central nervous system. In: Goldman L, Ausiello D, eds. Cecil Medicine. 23rd ed. Philadelphia, Pa: Saunders Elsevier;2007:chap 436.
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