Comfort of Home Multiple Sclerosis Edition: An Illustrated Step-by-Step Guide for Multiple Sclerosis Caregiversby Maria M. Meyer, Paula Derr, Kimberly Koch, Diane Afes, National Multiple Sclerosis Society Staff
With this book in hand, MS caregivers will understand the day-to-day issues that MS patients confront. This empowering guide offers practical advice on every aspect of home care for the MS patient, from preparing the home for comfort and safety to assisting with activities of daily living. Other topics covered are financial management, purchasing equipment, travel,
With this book in hand, MS caregivers will understand the day-to-day issues that MS patients confront. This empowering guide offers practical advice on every aspect of home care for the MS patient, from preparing the home for comfort and safety to assisting with activities of daily living. Other topics covered are financial management, purchasing equipment, travel, therapies, and strategies for avoiding caregiver burnout.
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The Comfort of Home Multiple Sclerosis EditionAn Illustrated Step-by-Step Guide for Multiple Sclerosis Caregivers
ContentsPart One: Getting Ready 1. Is Home Care For You? 2. Using the Health Care Team Effectively 3. Getting In-Home Help 4. Paying for Care 5. Financial Management and Tax Planning 6. Planning for the Life Continuum 7. Preparing the Home 8. Equipment and Supplies Part Two: Day by Day 9. Setting Up a Plan of Care 10. How to Avoid Caregiver Burnout 11. Activities of Daily Living 12. Therapies 13. Special Challenges 14. Diet, Nutrition, and Exercise 15. Emergencies 16. Body Mechanics-Positioning, Moving, and Transfers Part Three: Additional Resources 17. Common Abbreviations 18. MS Specialists 19. Other Specialists 20. International MS and Caregiver Organizations Glossary Index
Chapter OneSpecial Challenges
Speech Problems * 220
Intimacy and MS * 220 Managing Women's Sexual Problems Managing Men's Sexual Problems
Depression and MS * 221 Common Fears of a Person with a Chronic Illness Seasonal Affective Disorder Dealing with Boredom Continuing Education
Pain Management * 224 Pain Reduction Techniques
Cognitive Issues * 227
SpecialManagement Issues * 228 Swallowing Difficulties Mood Swings Spasticity Pseudobulbar Affect
Abuse * 230
Transportation and Travel * 231 Transportation Travel Travel Emergencies Travel and Living Wills Travel Discount Guidelines Traveling with Medications
Resources * 237
Communication is the ability to speak, understand speech, read, write, and motion with the hands. Nonverbal messages are expressed through silence, body movements, or the look on someone's face. Be aware that words can carry one message, the body another.
Speech problems in people with MS are caused by lesions in certain parts of the brain responsible for muscle control of the lips, tongue, soft palate, vocal cords, and diaphragm.
Dysarthria is a speech disorder in which speech is slurred or not spoken (articulated) clearly. There may also be a loss of volume control, unnatural emphasis, and slower rate of speech.
Dysphonia is a voice disorder. It involves changes in vocal quality, such as harshness, hoarseness, breathiness, or sounding nasal.
Help is available through a speech/language pathologist (SLP). Medications may be suggested by a physician. Severe speech problems may require the use of a device that makes the voice louder, electronic aids, or computer-assisted communications systems.
Intimacy and MS
Intimacy and sexuality are important to a healthy and contented life. Sexuality does not have to disappear from the lives of couples when one partner has MS. Although people report that their relationships suffer as a result of MS, many people, with or without MS, don't talk easily about their sexuality.
Men and women with MS may want to define sexuality for themselves. This may mean relying more on forms of touching that provide warmth, for example, cuddling, caressing, and massage. Oral and manual stimulation can be highly satisfying alternatives to intercourse. Be romantic, even about everyday activities, so that intimacy grows.
Managing Women's Sexual Problems
Women with MS may have a loss of sex drive, or sensory changes in the genitals, such as vaginal dryness and difficulty or inability to reach orgasm. Medications such as phenytoin and carbamazepine may help with these sensory discomforts. Oral or manual stimulation of the clitoris can help a woman achieve orgasm. Vibrators may also provide stimulation. Water-soluble lubricants are available over the counter to increase vaginal lubrication.
Managing Men's Sexual Problems
The most common problems in men with MS are difficulty or inability to get or hold an erection, decreased genital sensation, and difficulty or inability to ejaculate. Oral medications, such as Viagra, Cialis, Levitra, and injectable medications, such as Papazerine and Alprostadil, are currently used to treat erectile problems, and have been effective in 50% of men with MS. Check with a physician about the latest medications and approaches.
Depression and MS
"Depression" is a term applied to a number of emotional states in MS and is believed to be a symptom of the disease as well as a reaction to it. These states may range from feeling down for a few hours to severe clinical depression that may last for several months. At least half of all people with MS will have serious depression at some point in their disease course.
Symptoms of depression may include sadness or unhappiness that does not go away, tiredness, a change in normal sleep patterns, physical unease, trouble thinking or focusing, feelings of being unworthy or guilt, and thoughts of death or suicide that do not go away.
Depression does not mean a person has a weak character. It should not be considered something shameful that needs to be hidden. It is not something that a person can control or prevent by sheer willpower.
Drug therapy is readily available to treat some of the symptoms of depression. Antidepressants can be prescribed by the primary care physician. Psychotherapy, combined with drug therapy, is often the most effective treatment.
Common Fears of a Person with a Chronic Illness
loss of self-image
loss of control over life
loss of independence and fear of being abandoned
fear of living alone and being lonely
fear of death
You can help deal with these powerful emotions by:
pointing out the person's strengths and focusing on small successes
restoring areas of control to the person by giving as many choices as possible
finding new ways for the person to adjust to limitations
helping the person learn new ways to find meaning in life
changing your attitude about the person's disability
being aware that humor is healing and providing large doses of laughter, and providing humorous books, comics, cartoons, television, or movies
allowing the person to cry upon hearing news of a diagnosis
allowing for the power of silence
providing opportunities for peer support and friendship
Seasonal Affective Disorder
Some depression can be brought on by the dark, gloomy days of winter. This type of depression may be treated by sitting in front of full-spectrum lights for 1 hour a day. However, don't trust gadgets that promise miraculous results.
Dealing with Boredom
Boredom can be another problem. It may take all of your and your partner's creativity to fight it. Try the following:
taking car or bus trips
listening to music
taking up hobbies
going to social events
playing board games and card games
attending discussion clubs at the public library and using large print or talking books
joining activist organizations
spending time with others in similar difficulties (religious groups, recreation centers, or the YMCA/YWCA)
being involved in volunteer service organizations
using a computer and accessing sites on the Internet (which provides an interesting activity and allows the person to communicate with family and friends through e-mail)
Attending continuing education classes at local colleges or correspondence schools can provide education opportunities, even for those who can't get out of the house. Most schools offer academic and nonacademic classes (for example, boat building, ceramics, and garden design).
To find the program that fits your needs
Check college programs in your area.
Check organizations such as museums, botanical gardens, and arts groups.
Check Internet listings devoted to distance learning.
Check PBS Adult Service Online, which offers college courses based on their documentaries (see Resources).
Check high-school evening courses.
Pain in MS is not uncommon. In one study, 55% of the people studied had "clinically significant pain," at some time during the course of the MS. Almost half (48%) were troubled by chronic pain. Factors such as age when it started, length of time with MS, or degree of disability do not seem to play a part in whether people have pain or not.
There are several types of pain in MS:
One type of acute pain in MS is trigeminal neuralgia, or a stabbing pain in the face. This can be treated with medications such as Neurontin or Tegretol. For more advanced cases, there is also a surgical treatment called rhizotomy that severs the nerve roots that carry sensations. Another is called Lhermitte's sign; it is a stabbing, shock-like sensation running from the back of the head down the spine, which is brought on by flexing the neck. Medication is of little use because the pain comes on suddenly. A soft collar to limit neck flexion may be helpful.
Dysesthesia is another kind of pain in which there is burning, aching, or "girdling" around the body. These pains can be treated with Neurontin or with antidepressants such as Elavil. Other treatments involve wearing a pressure stocking or glove, which can change the sensation of pain to one of pressure.
Burning, aching, prickling, or "pins and needles" may be chronic rather than acute. The treatments are the same as for the acute dysesthesias described above.
Chronic back and other musculoskeletal pain are the result of pressure on the body caused by immobility, incorrect use of mobility aids, spasticity, and stress on the body from walking problems. Treatments may include heat, massage, ultrasound, physical therapy, and treatment for spasticity.
Pain Reduction Techniques
The most effective ways to relieve pain are pain medications (analgesics), sleep, immobilization, and distraction. (Heat and cold increase or decrease circulation to the affected area, but should not be used without specific instructions from a doctor.)
To reduce pain, consider:
distraction through TV, music, or reading aloud
distraction from a medical procedure by massaging the person's hand
reduction of stress and promotion of healing through relaxation, meditation, and prayer
Some types of pain may also be controlled by the following treatments:
Acupuncture-placing needles into designated points of the body
Acupressure-applying pressure and massage at acupuncture points
Biofeedback-monitoring reactions to thoughts by measuring changes in blood pressure, temperature, and body organs
Deep breathing-slow deep breaths taken through the nose and exhaled slowly through pursed lips (relieves pain by increasing oxygen to brain)
Opioids-narcotics provide very strong relief but can be addicting if taken long term
Hypnosis-an altered state of mind that shifts the focus on pain to another idea
Meditation-picturing relief from pain
Placebo-a "sugar" pill that fools the body into thinking it is taking a painkiller and signals pain relief
Surgery-permanent severing (cutting) of nerves to block pain (a serious step that requires careful thought)
Topical pain relievers-creams, rubs, or sprays applied to muscles or joints
Transcutaneous nerve stimulator (TNS)-an electronic device placed over acupuncture points
About 50%-60% of people with MS will have some degree of cognitive dysfunction. This means the ability to think, reason, concentrate, or remember have become limited in some way. Of those, 40% will experience moderate problems, and 5% to 10% of persons with MS develop problems that are severe enough to affect everyday activities. There is no relationship between the level of physical disability and degree of cognitive dysfunction.
The cognitive function frequently affected appears to be memory or recall problems, especially short-term memory. For example, a person may not be able to remember an important phone number learned that morning. That same person will have no trouble remembering things from the distant past.
Other cognitive changes frequently affected by MS include:
how quickly a person can process information
the ability to recognize and draw or assemble things (visual-spatial abilities, which are involved in driving a car and finding one's way around)
verbal fluency (how easily a person finds and uses words)
executive functions, including organizing, planning, prioritizing, and problem solving
Help may be available through the services of these specialists:
neuropsychologist-who studies behavior, the brain, and the nervous system
speech pathologist-who studies the nature of speech problems
occupational therapist-who helps regain and build skills needed for independence
Together, these treatments are referred to as cognitive rehabilitation. More and more people with MS are taking weekly sessions in which they learn a number of ways to help with memory issues, organizational skills, and time management.
Special Management Issues
Dysphagia, or difficulty in swallowing, can occur among people with MS. The person may cough after drinking liquids, or choke while eating certain foods, especially those with crumbly textures.
A speech/language pathologist is the professional who diagnoses and treats dysphagia. Treatment usually includes changes in diet, and exercises or stimulation to improve swallowing. In very severe cases that do not respond to these measures, feeding tubes may be inserted directly into the stomach to provide the necessary fluids and nutrition.
Mood swings or "moodiness" may affect persons with MS and is seen as rapid and generally unpredictable changes in emotions. Family members may complain about frequent bouts of anger or irritability. Mood swings are believed to be a symptom of the disease as well as a reaction to it. Whatever the cause, mood swings can be one of the most challenging aspects of MS from the standpoint of family life. Family counseling may be very important in dealing with this since mood swings are likely to affect everyone in the family. Consult with your health care professional on medications to help with severe mood swings.
Spasticity refers to feelings of stiffness and a wide range of involuntary muscle spasms (sustained muscle contractions or sudden movements). It is one of the more common symptoms of MS. Spasticity may be as mild as the feeling of tightness of muscles or may be so severe as to produce painful, uncontrollable spasms of extremities, usually of the legs. Spasticity may also produce feelings of pain or tightness in and around joints, and can cause low-back pain. Although spasticity can occur in any limb, it is much more common in the legs.
Spasticity may be aggravated by sudden movements or position changes, muscle tightness ("adaptive shortening"), extremes of temperature, humidity, or infections, and can even be triggered by tight clothing.
Treatment Helps Prevent Complications
Left untreated, spasticity can lead to serious complications, including contractures (frozen or immobilized joints) and pressure sores. Because these complications also act as spasticity triggers, they can set off a dangerous increase of symptoms. Treatment of spasticity and muscle tightness by medication and physical and occupational therapy is needed to prevent painful and disabling contractures in the hips, knees, ankles, shoulders, and elbows.
Surgical measures are considered for those rare cases of spasticity that defy all other treatments.
Spasticity Can Provide Some Benefit for People with Significant Weakness
Some degree of spasticity can also provide benefit, particularly for people who experience significant leg weakness. The spasticity gives their legs some rigidity, making it easier for them to stand, transfer, or walk. The goal of treatment for these individuals is to relieve the spasticity sufficiently to ensure comfort and prevent complications, without taking away the rigidity they need to function.
A small percentage of persons with MS experience a more severe form of emotional lability (mood swings) called "pseudobulbar affect" in which there are uncontrollable episodes of laughing and/or crying that are unpredictable and seem to have little or no relationship to actual events or the individual's actual feelings. These changes are thought to result from lesions-damaged areas-in emotional pathways in the brain. It is important for family members and caregivers to know this, and realize that people with MS may not always be able to control their emotions. Several medications have shown benefit in small clinical trials.
Abusive behavior is never acceptable. Though tensions can mount in the most loving of families and result in frustration and anger, an emotionally damaging or physically forceful response is not okay. When this happens, call for a time-out, and call for help.
Physical abuse usually begins in the process of giving or receiving personal help. For instance, the caregiver might be too rough during dressing or grooming, or the person with MS might scratch a caregiver during a transfer. Once anger and frustration reach this level, abuse by either person may become frequent.
The dangers of physical abuse are easy to see, but emotional abuse is also unhealthy and damaging. Continued shaming, harsh criticism, or controlling behaviors can damage the self-esteem of either person.
Excerpted from The Comfort of Home Multiple Sclerosis Edition by Maria M. Meyer Paula Derr Copyright © 2007 by CareTrust Publications. Excerpted by permission.
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