CAP treatment and its Outcome on MS issues we don't normally discuss on this site
At Mac's suggestion, I am starting a dicussion topic on CAPi treatment and its Outcome on MSi issues that we don't normally discuss on this site.
Cognitive and personality symptoms of those with MS.
My question for discussion is what benefits or improvements in the so called MS personality type, if any at all, as well as other documented issues below experienced as a result of CAP?
We mostly talk about walking and balance here relative to MS but these issues are in someways more iportant to overall quality of life for MS'er and MS'er's family.
Quote from an article on David Wheldonii's website about personality changes in MSi patients
"Compared with normal control subjects, cognitively impaired MS patients were more neurotic and were less empathic, agreeable, and conscientious.
In other words, they were judged by friends and relatives as emotionally overreactive, more irritable, and more tense than normal.
They were also considered less outgoing, deliberate, and appreciative of the thoughts and feelings of others. Similar traits were found previously in Alzheimer's disease by using the NEO-PI, suggesting that our data may be demonstrating a more general dementiaii personality profile. "
Also from the DSM - - The Diagnostic and Statistical Manual (DSM), which is used by mental health professionals, describes the effects of MS in its discussion of chronic and organic brain syndrome and organic personality syndrome: abnormal mood shifts, anxiety, affective instability, outbursts, aggression, rage, suspiciousness, and paranoia.
And finally from the National MS society publication - Here is link to full pub
"
LIVING WITH MS
MEMORY, PERSONALITY CHANGES,
MOOD SWINGS, AND DEPRESSION
“We are afraid to leave Mother alone. She is so forgetful.”
To varying degrees, as a result of the disease process, about half of all people with MS have some trouble with memory, problem-solving, or other cognitive functions. Short-term memory problems are the most common. People typically forget recent events, but remember things they have known for many years.
“Our father seems so different from how he used to be. It’s as if his personality has changed.”
Changes in the brain areas that control behavior and emotions may cause personality changes. Some people lose their tempers more easily; some become less interested in what goes on around them; others become less concerned with social norms or are less organized. Some people have trouble initiating activities, planning, or following through.
While many people with MS do not have mental or personality changes, it is important to recognize such problems if they develop and to seek professional advice. A neurologist may suggest a consultation with a neuropsychologist who can test cognitive functioning and recommend strategies for both the patient and the family that will make limitations less troublesome.
“My husband seems to go through a lot of mood swings. One minute he seems happy and content and the next he’s angry and depressed.”
There are several causes for abrupt changes in mood, which is also called “emotional lability”. Some people have MS lesions in the brain which result in mood swings. Others may be taking medications that contribute to mood swings such as high-dose steroids. Emotional lability may also stem from emotional distress in the face of the day-to-day challenges of MS. In some cases, mood swings may indicate an underlying mental illness called bipolar disorder.
Since the right diagnosis is important, mood swings should be discussed with a doctor. Depending on the cause, mood swings may respond to antidepressant medications, mood-stabilizing medications, changes in the dosage of steroid medication (or the use of lithium or Depakote with it), psychotherapy, and family counseling.
“I don’t understand how my wife can seem so cheerful day in and day out when she is so disabled.”
Some people with MS show a surprising lack of concern about their illness and appear cheerful no matter what takes place. This is called euphoria and is caused by damage to parts of the brain that control the expression of emotion. Appearances may be deceptive, however, and the person with MS may actually feel sad and worried. This discrepancy can confuse family members and friends. It may help to discuss how to address this problem with a neurologist, a neuropsychologist, or a psychiatrist.
“My wife starts to cry for no apparent reason and says she can’t stop herself. When I ask what she’s sad about, she says she doesn’t know.”
Like euphoria, MS lesions can cause a condition called pseudobulbar affect, or laughing and/or weeping. People cry, or laugh, for very little or no reason and have difficulty stopping. They know that the crying or laughing is out of proportion to the situation, but cannot help themselves. This symptom occurs in other brain conditions such as stroke, and usually can be treated effectively with medication.
“We couldn’t tell if my husband was depressed or losing his mental sharpness.”
It is often difficult to distinguish cognitive and personality changes from depression, but it is important to do so because the treatments are entirely different. Almost everyone with MS is depressed at some time. For some, depression is mild and passes quickly. The support of family and friends helps the person through. But for others depression is much more serious. The distress lasts for a long time. It may affect sleeping and eating habits as well as family, work, and social relationships.
Depression can make people disinterested, fatigued, withdrawn, and irritable; it can affect concentration and memory. Depressed people may think life is not worth living and may contemplate suicide.
Some people try to hide these feelings out of shame. Clues to watch for include loss of interest in activities, withdrawal from people, and ongoing sadness or irritability. People who had depression before MS began or who have family members who have been depressed are particularly at risk. Depression can be treated effectively with a combination of psychotherapy and antidepressant medication. A psychiatrist can help clarify the extent to which depression or cognitive problems are causing symptoms and prescribe antidepressants if appropriate. Psychiatrists, psychologists, psychiatric social workers, or psychiatric nurses can provide therapy.
“My husband denies his disability by refusing to use a cane even though he falls frequently. This is very frustrating for us.”
While some people with MS (or their family members) clearly know the MS exists, they act as if it doesn’t. Refusing to believe that something is true is different from having hope. Hope involves accepting reality with an optimistic outlook and taking reasonable steps to make the best of an unfortunate situation.
It is important to allow an individual time to make difficult transitions. If denial persists people may need to call on family advisors, spiritual leaders, or mental-health professionals.
“What we find hardest to deal with is the constant unpredictability.”
People with MS don’t know from day to day, or even hour to hour, whether they will feel well or not. Symptoms of MS typically fluctuate. Will the person with MS be able to join in the family’s activities? Will special help be needed? Will some hoped-for event have to be canceled? This unpredictability is frustrating. It can lead to misunderstanding and conflict: Is the person really so unwell? Should he or she be pushed or left alone?
Unpredictability makes it hard to plan for the future. Should the family buy that new house, or does it have too many stairs? Will there still be two incomes to meet the mortgage payments? Should the person with MS change jobs or stop working?
Uncertainty may be easier to live with if it is expected. There may be less disappointment when a plan falls through if an alternate plan has been made—just in case.
“I get very angry at how things have changed, but I feel guilty about my feelings.”
These are two of the most common feelings in families dealing with MS. It is natural to feel angry about the changes and the demands the illness places on a family: a drop in income, new responsibilities, changes in traditional roles. These are practical and emotional burdens that everyone has a right to be angry about.
“My wife is so self-centered and angry these days that it is very hard to live with her.”
Some people with MS become so focused on getting through each day that they pay less attention to other people. Their own feelings and body functions become the objects of their emotional investment. They may become angry and critical of those caring for them. They may believe that their situation would improve with a different doctor, a better therapist, or a more supportive family. Angry criticism or lack of interest in others easily provokes hurt or anger among family members.
Recognizing that these feelings are not uncommon in people with MS and that they usually pass with growing adjustment to the disease may help families to remain tolerant. It may also help if family members let the person with MS know how they feel.
“Most of the time I don’t mind helping at home but sometimes I can’t stand it. One day I lost my temper and told my mom that I really hated having to do so much extra work. Then I felt bad that I had yelled at her.”
Tension builds when family members fear that the expression of strong emotion will make the MS worse. Holding feelings back, however, may lead to angry outbursts or to avoiding the person with MS. Family members may blame the person with MS for everyone’s distress. In the end, tension, anger, and loneliness are far more damaging than the open airing of feelings. Talking frankly, at a calm moment, helps every member of the family understand the strains each person feels.
“Last night when I transferred my wife from her wheelchair to the bed, I was kind of rough. This morning when I saw the bruise on her leg, I wondered whether I intended to hurt her. We had been arguing, and I was mad. I’m exhausted from taking care of her and the kids. I feel frightened.”
When people are very angry and frustrated, they may have the impulse to lash out physically. Most of the time, people can control such impulses. But when caregivers feel overwhelmed, or are worn out, stressed, or sick, even the most thoughtful can lose control. Sometimes a caregiver is unnecessarily rough; sometimes a caregiver is actually assaultive.
People with MS who must depend on others are very vulnerable. Some have been victims of neglect, physical attack, and sexual abuse. People with MS may also be overwhelmed and become verbally or physically abusive to others.
Family members who are troubled by their own behavior should seek professional help. All communities have mechanisms for reporting abuse and obtaining help, and both caregivers and people with MS should not hesitate to report their concerns. Inability to care appropriately for a person with MS does not mean that the caregiver is “bad”. It means that there are serious problems that need to be corrected.
“At some point I stopped being angry all the time and became very sad.”
Anger may mask feelings of sadness. The many losses from MS lead to feelings of grief: waves of painful emotion, tears that seem to come from nowhere and don’t stop. People may have trouble sleeping or lose interest in food or activities. Some people don’t want to be alone; others seek solitude. These feelings may arise when the diagnosis is first made, or may come years later. When grieving is allowed to follow its natural course, there usually comes a time when the losses are accepted and energy is renewed. When grief is stifled, the sufferer remains stuck in anger and bitterness, unable to move forward.
“When I look at my wife I feel so helpless. Sometimes I think I just can’t stand it any longer.”
Helplessness is painful. It makes people feel childlike and weak, frightened and angry. Instead, some people imagine that they can stop the MS or could have, if only ... but that makes them feel guilty. Others try to help too much, but may do so in the wrong ways, at the wrong times. The truth is that there are real limits to how much anyone can do. Facing that fact is the first step in helping the person with MS and the family come to terms with the
illness.
“I can give up a great deal for my husband, but after a while I get annoyed.”
When people help so much that they have no time for themselves, they are not really helping as much as they think they are. Even the strongest people sometimes feel burdened and angry. They may take out their frustration on those they want to help or feel so guilty and depressed that they have nothing left to give. While it may be difficult, family members need to find time for their own activities. Some communities offer respite services to give families—and people with MS—much needed breaks.
Sharing information and strategies for coping in a support group can also help. The understanding and advice of people “in the same boat” can make a big difference. Some people also find that learning stress management techniques helps them cope more effectively.
“We never go out or have friends over anymore.”
When families are overwhelmed with the care of a chronically ill person, and with adjusting to new roles and responsibilities, they may feel they have no time or energy left to socialize. Some think that their friends don’t understand what they are going through or won’t want to be burdened by their problems. Others worry that friends won’t enjoy their company because they are so depressed or preoccupied. But avoiding friends or rejecting their offers to help may push them away. While socializing may be more difficult than before, it is an important source of emotional well-being. Being around others can help restore a feeling of normality.
Families often come to realize that their friends have not pulled away, as they may have thought, but that they themselves have been withdrawing from their friends. Indeed, friends generally welcome learning how the person with MS and the family are really feeling. They appreciate clear and specific instructions about how and when they can help.
“We seem to have more trouble coping now than when my husband was first diagnosed five years ago.”
It is not uncommon for stresses and painful feelings to emerge a number of years after MS begins. Many people with MS have few symptoms at first. They can get around, work, and participate fully in family and social activities. Only later, if the disease progresses and places limitations on daily functioning, do people recognize how MS has changed their lives.
“I find it difficult to deal with my husband’s loss of sexual function.”
MS can affect sexual functioning in both men and women. As in any other chronic illness, sexual desire may lessen. In addition, MS plaques in the spinal cord can interrupt the pathways for sensation and arousal in both sexes and for erection in men. Sexual dysfunction, like other MS symptoms, may come and go, and this unpredictability makes people anxious about intimacy. Anxiety itself can interfere with sexual functioning.
These problems should not be ignored. Sexual problems can make it difficult for a couple to be loving and intimate with each other. Talking openly about sex and working together to find other ways to give and receive pleasure allows many couples to have satisfying sexual relationships.
“Are there ways to treat the sexual problems caused by MS?”
There are several options. Non-medical sexual aids are widely available and may be useful in enhancing pleasure for both men and women.
For men who cannot get or maintain an erection, there are oral medications such as Viagra (sildenafil) and Levitra (vardenafil). Injectable medications include Papaverine and Alprostadil. Surgical implantation of a mechanical device (called a penile prosthesis) may help some men. A urologist can discuss these medical options with you and help you determine the best approach.
For women, vaginal lubrication may be enhanced by using over-the-counter, water-soluble lubricants.
Other MS problems such as spasticity, bowel and bladder incontinence, fatigue and weakness, as well as depression and anxiety, often interfere with sexual activity. Many of these problems can be treated successfully with medications, rehabilitation, counseling, and life-style changes.
Although many people are uncomfortable at first, speaking to a doctor about such concerns is vital. Counseling with a mental health professional or certified sex therapist may also help couples identify barriers to a satisfying sexual relationship and develop strategies to overcome them.
“We both want to have a child, but I’m afraid pregnancy will make my wife’s MS worse.”
Research suggests that pregnancy has no negative effect on the overall course of MS although there may be a greater chance of a relapse or exacerbation in the period immediately following pregnancy. MS does not appear to affect the developing fetus or to complicate delivery, and most neurologists do not discourage a couple from having a child. However, a woman who is taking a disease-modifying medication will be advised to stop before getting pregnant. This should be fully discussed with her health-care providers.
The parents-to-be also need to consider how they will care for the child should the parent with MS become disabled. These difficulties should not be exaggerated or minimized, but approached realistically. Talking to people with MS who are raising children can be very helpful.
“I’m not the one with MS, but I’ve been quite depressed. All we talk about are doctors and medicines. There is no fun anymore, just arguments and misunderstandings.”
It is important to remember that MS affects everyone in the family, and that all family members are entitled to their feelings. Family members have also lost a great deal. They may feel discouraged and depressed, unappreciated and resentful. Sometimes they feel guilty about seeking help for themselves, believing they should be tougher, or that they don’t deserve the special attention of a counselor or a support group.
“We no longer share the interests and life-style that brought us together. Sometimes I think we’d both be better off if we divorced.”
The strains MS places on a relationship cannot be underestimated. Much of what a couple had planned and worked for may now be impossible. Both partners feel cheated. Some couples adopt goals that are more feasible, and although disappointment remains, work together to achieve these alternative aspirations.
Some partners find themselves unable to give up their wishes or change their expectations, and they may ultimately pursue a separation or divorce. Of course, this is difficult for everyone, but it need not be devastating. With the help of family, friends, and professionals, couples can work out separation agreements that take into account the emotional and physical needs of both people.
“As parents, we feel torn between wanting to do everything we can for our daughter and knowing she has to learn to take care of herself.”
It is hard for parents of young adults with MS not to be overprotective. It is terribly painful to see one’s child become disabled and to face the fact that his or her life will not be what the parents had hoped. Parents inevitably worry about who will care for their son or daughter when they are gone. But if parents, out of love and concern, do more than is absolutely required, they will prevent their child from developing the abilities and confidence needed for independent living. Sometimes it is more helpful to be less helpful!
“Our son was so angry about his MS that we asked him to see a psychotherapist for help.”
Seeking professional help does not mean that the family has failed. In fact, it is best to seek counseling before a crisis develops or distress becomes overwhelming. Many people find it easier to talk to someone outside the family. Professional psychotherapists (psychiatrists, psychologists, or psychiatric social workers), teachers, and clergy who have had experience with chronic illness and disability are all valuable resources.
CHILDREN AND MS
“Our biggest problem has always been ‘What do we tell our children?’”
Even very young children notice slight physical changes in a parent. They readily pick up on their parents’ emotional distress. If parents avoid talking about MS, a child may think it is too terrible to talk about. Children may not express their worries openly, so they should be encouraged to share what they are thinking. This gives parents an opportunity to clear up their misconceptions and offer reassurance.
“I know I will start to cry if I tell my daughter what’s wrong with my wife.”
It is not harmful for a child to see a parent’s genuine feelings. While it is inappropriate to burden children with adult problems, honest expression of sadness, frustration, or anger makes it clear that such emotions are normal and acceptable. This may also help a child be more willing to talk about his or her own feelings.
“Our son began to do poorly in school shortly after my wife returned home from the hospital after an exacerbation.”
Children’s fears often appear as changes in behavior, withdrawal from family and friends, poor schoolwork, or aggression. If the home atmosphere is one in which thoughts and feelings are shared and questions are answered honestly, children are more likely to turn to their parents with their worries. This is an ongoing process; children’s concerns will change as they grow and as the MS itself changes.
“I know my daughter is having a hard time, but it upsets me to see how embarrassed she is about her father.”
Many older children and teenagers seem embarrassed by their parents whether they have MS or not. Children may worry that their friends think less of them because of their parent’s disability. Embarrassment may also be an indirect way of expressing fear, sadness, and anger. Parents can help by encouraging their children to express their underlying feelings. Eventually most children will see qualities in their parents that make them proud.
“Our son says he cannot go away to college because he needs to be around home to help.”
Children in MS families grow up with firsthand knowledge of illness and disability. Many become unusually aware of the feelings and needs of others. But, paradoxically, this valuable quality makes some children feel selfish if they seek their own goals. They may need to be encouraged to balance their desire to be helpful with their equally important need to have lives of their own. Some children who try too hard to help or are too “good” may harbor the fear that they did something to cause the MS or that they could do something to stop it. They may need help to overcome this.
WHAT DOES THE FUTURE HOLD?
“My wife can no longer work and we need her income. I have taken a second job now, but who will make dinner and watch the kids? We don’t have family nearby and cannot afford to hire help.”
MS can put enormous financial burdens on a family. Not only may an important source of income be lost, but the costs of medical care, transportation, home health care, and child care can be overwhelming. Such problems require major decisions. Should the family move to less expensive housing? Should the healthy partner take a second job? Should the family deplete its resources to qualify for government assistance?
There are no easy solutions, but health and social service agencies, lawyers and financial planners, and chapters of the National MS Society are excellent sources of information. The Americans with Disabilities Act, passed in 1990, has had an encouraging impact in the areas of employment, public accommodation, and transportation. Find out how this federal legislation protects you or offers additional options.
“My husband now needs a lot more help, but since we depend on my income, I can’t stay home to care for him. Perhaps he would get better care and more attention in a nursing home.”
Decisions regarding appropriate care for a severely disabled person may be very painful. No one wants a loved one to live in an institution, but sometimes this is the only reasonable alternative. While most nursing homes are not designed for younger residents, some do make efforts to provide special programming for them.
Visiting and talking to the staff and residents of several facilities is essential. Finding a home near the family will make it easier to visit. Peer groups and professional counseling may help family members resolve the feelings of guilt, anger, and sadness that inevitably accompany the transition to a new living arrangement.
“Every so often I wonder where all this will end.”
It is normal to have some pessimistic thoughts. But when bleak fantasies are persistent or out of line with reality, they produce needless unhappiness. It is important to remember that most people do not have the most severe type of MS. While no one can predict the future, talking with a neurologist may help one form a realistic picture and maintain a balanced perspective. Sharing fears and worries also makes them easier to bear.
“When I talk to other people, it seems there are some problems we have in common and others that are unique to me.”
Families coping with MS are alike in many ways. They go through the same reactions of anger, sadness, and guilt. Families at the same developmental stage share similar problems. Young couples just starting out wonder about having children or staying together at all. Couples with children face helping them adjust to a parent who does not always feel well and may become disabled. Older couples have to find new ways to enjoy their leisure years.
Each family has its own unique stresses and ways of coping. Some couples split up because they cannot resolve their problems. Some families stay in a state of chronic unhappiness, frustration, and loneliness.
But many others, on their own or with professional help, find a way to make up for what MS takes away. They are able to talk about painful feelings—anger, hurt, sadness—and to bring their grievances out into the open. They learn to identify their problems and tackle them with a sense of competency and hope. In these families, the well members are able to find ways to help without doing too much for the person with MS. They take time for themselves without feeling guilty.
Perhaps the most important feature of these families is that the members talk openly with one another and respect each other’s feelings and wishes. They also recognize that many of life’s problems have nothing at all to do with MS.
"
LIVING WITH MS
“My husband denies his disability by refusing to use a cane even though he falls frequently. This is very frustrating for us.”
While some people with MS (or their family members) clearly know the MS exists, they act as if it doesn’t. Refusing to believe that something is true is different from having hope. Hope involves accepting reality with an optimistic outlook and taking reasonable steps to make the best of an unfortunate situation.
It is important to allow an individual time to make difficult transitions. If denial persists people may need to call on family advisors, spiritual leaders, or mental-health professionals.
“What we find hardest to deal with is the constant unpredictability.”
People with MS don’t know from day to day, or even hour to hour, whether they will feel well or not. Symptoms of MS typically fluctuate. Will the person with MS be able to join in the family’s activities? Will special help be needed? Will some hoped-for event have to be canceled? This unpredictability is frustrating. It can lead to misunderstanding and conflict: Is the person really so unwell? Should he or she be pushed or left alone?
Unpredictability makes it hard to plan for the future. Should the family buy that new house, or does it have too many stairs? Will there still be two incomes to meet the mortgage payments? Should the person with MS change jobs or stop working?
Uncertainty may be easier to live with if it is expected. There may be less disappointment when a plan falls through if an alternate plan has been made—just in case.
“I get very angry at how things have changed, but I feel guilty about my feelings.”
These are two of the most common feelings in families dealing with MS. It is natural to feel angry about the changes and the demands the illness places on a family: a drop in income, new responsibilities, changes in traditional roles. These are practical and emotional burdens that everyone has a right to be angry about.
“My wife is so self-centered and angry these days that it is very hard to live with her.”
Some people with MS become so focused on getting through each day that they pay less attention to other people. Their own feelings and body functions become the objects of their emotional investment. They may become angry and critical of those caring for them. They may believe that their situation would improve with a different doctor, a better therapist, or a more supportive family. Angry criticism or lack of interest in others easily provokes hurt or anger among family members.
Recognizing that these feelings are not uncommon in people with MS and that they usually pass with growing adjustment to the disease may help families to remain tolerant. It may also help if family members let the person with MS know how they feel.
“Most of the time I don’t mind helping at home but sometimes I can’t stand it. One day I lost my temper and told my mom that I really hated having to do so much extra work. Then I felt bad that I had yelled at her.”
Tension builds when family members fear that the expression of strong emotion will make the MS worse. Holding feelings back, however, may lead to angry outbursts or to avoiding the person with MS. Family members may blame the person with MS for everyone’s distress. In the end, tension, anger, and loneliness are far more damaging than the open airing of feelings. Talking frankly, at a calm moment, helps every member of the family understand the strains each person feels.
“Last night when I transferred my wife from her wheelchair to the bed, I was kind of rough. This morning when I saw the bruise on her leg, I wondered whether I intended to hurt her. We had been arguing, and I was mad. I’m exhausted from taking care of her and the kids. I feel frightened.”
When people are very angry and frustrated, they may have the impulse to lash out physically. Most of the time, people can control such impulses. But when caregivers feel overwhelmed, or are worn out, stressed, or sick, even the most thoughtful can lose control. Sometimes a caregiver is unnecessarily rough; sometimes a caregiver is actually assaultive.
People with MS who must depend on others are very vulnerable. Some have been victims of neglect, physical attack, and sexual abuse. People with MS may also be overwhelmed and become verbally or physically abusive to others.
Family members who are troubled by their own behavior should seek professional help. All communities have mechanisms for reporting abuse and obtaining help, and both caregivers and people with MS should not hesitate to report their concerns. Inability to care appropriately for a person with MS does not mean that the caregiver is “bad”. It means that there are serious problems that need to be corrected.
“At some point I stopped being angry all the time and became very sad.”
Anger may mask feelings of sadness. The many losses from MS lead to feelings of grief: waves of painful emotion, tears that seem to come from nowhere and don’t stop. People may have trouble sleeping or lose interest in food or activities. Some people don’t want to be alone; others seek solitude. These feelings may arise when the diagnosis is first made, or may come years later. When grieving is allowed to follow its natural course, there usually comes a time when the losses are accepted and energy is renewed. When grief is stifled, the sufferer remains stuck in anger and bitterness, unable to move forward.
“When I look at my wife I feel so helpless. Sometimes I think I just can’t stand it any longer.”
Helplessness is painful. It makes people feel childlike and weak, frightened and angry. Instead, some people imagine that they can stop the MS or could have, if only ... but that makes them feel guilty. Others try to help too much, but may do so in the wrong ways, at the wrong times. The truth is that there are real limits to how much anyone can do. Facing that fact is the first step in helping the person with MS and the family come to terms with the
illness.
“I can give up a great deal for my husband, but after a while I get annoyed.”
When people help so much that they have no time for themselves, they are not really helping as much as they think they are. Even the strongest people sometimes feel burdened and angry. They may take out their frustration on those they want to help or feel so guilty and depressed that they have nothing left to give. While it may be difficult, family members need to find time for their own activities. Some communities offer respite services to give families—and people with MS—much needed breaks.
Sharing information and strategies for coping in a support group can also help. The understanding and advice of people “in the same boat” can make a big difference. Some people also find that learning stress management techniques helps them cope more effectively.
“We never go out or have friends over anymore.”
When families are overwhelmed with the care of a chronically ill person, and with adjusting to new roles and responsibilities, they may feel they have no time or energy left to socialize. Some think that their friends don’t understand what they are going through or won’t want to be burdened by their problems. Others worry that friends won’t enjoy their company because they are so depressed or preoccupied. But avoiding friends or rejecting their offers to help may push them away. While socializing may be more difficult than before, it is an important source of emotional well-being. Being around others can help restore a feeling of normality.
Families often come to realize that their friends have not pulled away, as they may have thought, but that they themselves have been withdrawing from their friends. Indeed, friends generally welcome learning how the person with MS and the family are really feeling. They appreciate clear and specific instructions about how and when they can help.
“We seem to have more trouble coping now than when my husband was first diagnosed five years ago.”
It is not uncommon for stresses and painful feelings to emerge a number of years after MS begins. Many people with MS have few symptoms at first. They can get around, work, and participate fully in family and social activities. Only later, if the disease progresses and places limitations on daily functioning, do people recognize how MS has changed their lives.
“I find it difficult to deal with my husband’s loss of sexual function.”
MS can affect sexual functioning in both men and women. As in any other chronic illness, sexual desire may lessen. In addition, MS plaques in the spinal cord can interrupt the pathways for sensation and arousal in both sexes and for erection in men. Sexual dysfunction, like other MS symptoms, may come and go, and this unpredictability makes people anxious about intimacy. Anxiety itself can interfere with sexual functioning.
These problems should not be ignored. Sexual problems can make it difficult for a couple to be loving and intimate with each other. Talking openly about sex and working together to find other ways to give and receive pleasure allows many couples to have satisfying sexual relationships.
“Are there ways to treat the sexual problems caused by MS?”
There are several options. Non-medical sexual aids are widely available and may be useful in enhancing pleasure for both men and women.
For men who cannot get or maintain an erection, there are oral medications such as Viagra (sildenafil) and Levitra (vardenafil). Injectable medications include Papaverine and Alprostadil. Surgical implantation of a mechanical device (called a penile prosthesis) may help some men. A urologist can discuss these medical options with you and help you determine the best approach.
For women, vaginal lubrication may be enhanced by using over-the-counter, water-soluble lubricants.
Other MS problems such as spasticity, bowel and bladder incontinence, fatigue and weakness, as well as depression and anxiety, often interfere with sexual activity. Many of these problems can be treated successfully with medications, rehabilitation, counseling, and life-style changes.
Although many people are uncomfortable at first, speaking to a doctor about such concerns is vital. Counseling with a mental health professional or certified sex therapist may also help couples identify barriers to a satisfying sexual relationship and develop strategies to overcome them.
“We both want to have a child, but I’m afraid pregnancy will make my wife’s MS worse.”
Research suggests that pregnancy has no negative effect on the overall course of MS although there may be a greater chance of a relapse or exacerbation in the period immediately following pregnancy. MS does not appear to affect the developing fetus or to complicate delivery, and most neurologists do not discourage a couple from having a child. However, a woman who is taking a disease-modifying medication will be advised to stop before getting pregnant. This should be fully discussed with her health-care providers.
The parents-to-be also need to consider how they will care for the child should the parent with MS become disabled. These difficulties should not be exaggerated or minimized, but approached realistically. Talking to people with MS who are raising children can be very helpful.
“I’m not the one with MS, but I’ve been quite depressed. All we talk about are doctors and medicines. There is no fun anymore, just arguments and misunderstandings.”
It is important to remember that MS affects everyone in the family, and that all family members are entitled to their feelings. Family members have also lost a great deal. They may feel discouraged and depressed, unappreciated and resentful. Sometimes they feel guilty about seeking help for themselves, believing they should be tougher, or that they don’t deserve the special attention of a counselor or a support group.
“We no longer share the interests and life-style that brought us together. Sometimes I think we’d both be better off if we divorced.”
The strains MS places on a relationship cannot be underestimated. Much of what a couple had planned and worked for may now be impossible. Both partners feel cheated. Some couples adopt goals that are more feasible, and although disappointment remains, work together to achieve these alternative aspirations.
Some partners find themselves unable to give up their wishes or change their expectations, and they may ultimately pursue a separation or divorce. Of course, this is difficult for everyone, but it need not be devastating. With the help of family, friends, and professionals, couples can work out separation agreements that take into account the emotional and physical needs of both people.
“As parents, we feel torn between wanting to do everything we can for our daughter and knowing she has to learn to take care of herself.”
It is hard for parents of young adults with MS not to be overprotective. It is terribly painful to see one’s child become disabled and to face the fact that his or her life will not be what the parents had hoped. Parents inevitably worry about who will care for their son or daughter when they are gone. But if parents, out of love and concern, do more than is absolutely required, they will prevent their child from developing the abilities and confidence needed for independent living. Sometimes it is more helpful to be less helpful!
“Our son was so angry about his MS that we asked him to see a psychotherapist for help.”
Seeking professional help does not mean that the family has failed. In fact, it is best to seek counseling before a crisis develops or distress becomes overwhelming. Many people find it easier to talk to someone outside the family. Professional psychotherapists (psychiatrists, psychologists, or psychiatric social workers), teachers, and clergy who have had experience with chronic illness and disability are all valuable resources.
CHILDREN AND MS
“Our biggest problem has always been ‘What do we tell our children?’”
Even very young children notice slight physical changes in a parent. They readily pick up on their parents’ emotional distress. If parents avoid talking about MS, a child may think it is too terrible to talk about. Children may not express their worries openly, so they should be encouraged to share what they are thinking. This gives parents an opportunity to clear up their misconceptions and offer reassurance.
“I know I will start to cry if I tell my daughter what’s wrong with my wife.”
It is not harmful for a child to see a parent’s genuine feelings. While it is inappropriate to burden children with adult problems, honest expression of sadness, frustration, or anger makes it clear that such emotions are normal and acceptable. This may also help a child be more willing to talk about his or her own feelings.
“Our son began to do poorly in school shortly after my wife returned home from the hospital after an exacerbation.”
Children’s fears often appear as changes in behavior, withdrawal from family and friends, poor schoolwork, or aggression. If the home atmosphere is one in which thoughts and feelings are shared and questions are answered honestly, children are more likely to turn to their parents with their worries. This is an ongoing process; children’s concerns will change as they grow and as the MS itself changes.
“I know my daughter is having a hard time, but it upsets me to see how embarrassed she is about her father.”
Many older children and teenagers seem embarrassed by their parents whether they have MS or not. Children may worry that their friends think less of them because of their parent’s disability. Embarrassment may also be an indirect way of expressing fear, sadness, and anger. Parents can help by encouraging their children to express their underlying feelings. Eventually most children will see qualities in their parents that make them proud.
“Our son says he cannot go away to college because he needs to be around home to help.”
Children in MS families grow up with firsthand knowledge of illness and disability. Many become unusually aware of the feelings and needs of others. But, paradoxically, this valuable quality makes some children feel selfish if they seek their own goals. They may need to be encouraged to balance their desire to be helpful with their equally important need to have lives of their own. Some children who try too hard to help or are too “good” may harbor the fear that they did something to cause the MS or that they could do something to stop it. They may need help to overcome this.
WHAT DOES THE FUTURE HOLD?
“My wife can no longer work and we need her income. I have taken a second job now, but who will make dinner and watch the kids? We don’t have family nearby and cannot afford to hire help.”
MS can put enormous financial burdens on a family. Not only may an important source of income be lost, but the costs of medical care, transportation, home health care, and child care can be overwhelming. Such problems require major decisions. Should the family move to less expensive housing? Should the healthy partner take a second job? Should the family deplete its resources to qualify for government assistance?
There are no easy solutions, but health and social service agencies, lawyers and financial planners, and chapters of the National MS Society are excellent sources of information. The Americans with Disabilities Act, passed in 1990, has had an encouraging impact in the areas of employment, public accommodation, and transportation. Find out how this federal legislation protects you or offers additional options.
“My husband now needs a lot more help, but since we depend on my income, I can’t stay home to care for him. Perhaps he would get better care and more attention in a nursing home.”
Decisions regarding appropriate care for a severely disabled person may be very painful. No one wants a loved one to live in an institution, but sometimes this is the only reasonable alternative. While most nursing homes are not designed for younger residents, some do make efforts to provide special programming for them.
Visiting and talking to the staff and residents of several facilities is essential. Finding a home near the family will make it easier to visit. Peer groups and professional counseling may help family members resolve the feelings of guilt, anger, and sadness that inevitably accompany the transition to a new living arrangement.
“Every so often I wonder where all this will end.”
It is normal to have some pessimistic thoughts. But when bleak fantasies are persistent or out of line with reality, they produce needless unhappiness. It is important to remember that most people do not have the most severe type of MS. While no one can predict the future, talking with a neurologist may help one form a realistic picture and maintain a balanced perspective. Sharing fears and worries also makes them easier to bear.
“When I talk to other people, it seems there are some problems we have in common and others that are unique to me.”
Families coping with MS are alike in many ways. They go through the same reactions of anger, sadness, and guilt. Families at the same developmental stage share similar problems. Young couples just starting out wonder about having children or staying together at all. Couples with children face helping them adjust to a parent who does not always feel well and may become disabled. Older couples have to find new ways to enjoy their leisure years.
Each family has its own unique stresses and ways of coping. Some couples split up because they cannot resolve their problems. Some families stay in a state of chronic unhappiness, frustration, and loneliness.
But many others, on their own or with professional help, find a way to make up for what MS takes away. They are able to talk about painful feelings—anger, hurt, sadness—and to bring their grievances out into the open. They learn to identify their problems and tackle them with a sense of competency and hope. In these families, the well members are able to find ways to help without doing too much for the person with MS. They take time for themselves without feeling guilty.
Perhaps the most important feature of these families is that the members talk openly with one another and respect each other’s feelings and wishes. They also recognize that many of life’s problems have nothing at all to do with MS.
- Login or register to post comments
- Email this page
- Printer-friendly version
Daisy- brave woman. A complex and emotion-laden subject, and one I hope we can speak seriously and honestly about. Here, if no place else. You of all people are an observer of the cognitive and personality deficits in a loved one who certainly has gone to the extreme part of this spectrum before beginning to crawl back.
I'm a psychologist, and my dissertation was in the area or psychometric. So I know a bit too much of the constructs of "personality" and how they are measured to believe in any findings that try to talk about an "MSi personality" or a "Cardiac personality" or "Fibromyalgia personality" etc. It's much more helpful to stay with the actual observations than artificially group them prematurely, especially with such poor measures as my profession has produced.
I have a personal interest in this are as well, not because I have MS as I don't, but Alzheimer's (another Cpni related disease) runs in my family and I have witnessed many of the changes described above in MS in my father and now reflect on this through a Cpn lens.
That said, brain infectionsi are... brain infections. It seems to me that brain functions that are affected can be variously from:
Damage to areas of emotion (limbic) and personality (prefrontal and frontal cortex) directly.
Personality changes are widely reported in brain inflammationi conditions such as fever, meningitis, and so on, i.e. from the impact of cytokinesi on brain centers.
We certainly know that porphyriai produces symptoms ranging from anxiety and depression, poor cognitive functioning (brain fog), all the way to paranoia and psychosis.
Frontal lobe capacity, the ability to have self-observation and insight as to one's own behavior, is particularly susceptible to both endogenous and exogenous factors. Systemic infection with Cpn, the liver involvement for example, will have unexpected effects on brain functioning as the increase of exogenous chemicals not well processed by an infected liver has a huge effect on brain-sensitization, a la chemical sensitivities. Dysbiosis via gut membrane impairment from Cpn as well as co-infections likewise overloads the body with all sorts of allergenic and other toxic components. I literally have just watched a client with these latter two factors go from cognitively impaired and chronically irritable and angry to restored thinking capacity and change in mood when we did work that cleared his liver (a rather dramatic piece of energy work, but that's another story).
These are just a few things off of the top your post has stimulated. I'll look forward to the discussion here, and applaud you for breaching the topic. Brave on!
CAP for Cpn 11/04. Dxi: 25yrs CFSi & FMSi. Protocol: 200mg Doxyi, 500mg MWF Azith, Tinii 1000mg/day pulses; Vit D1000 units, INHi 150mg, Magnascent Iodine 20 drps/day, T4 & T3
CAPi for Cpni 11/04. Dxi: 25+yrs CFSi & FMSi. Currently: 250 aithromycin mwf, doxycycline 100mg BIDi, restarted Tinii pulses; Vit D2000 units, T4 & T3, 6mg Iodoral
Jim - I knew it would be touchy to use the words "disease and personality type" together. That's why I started with DW's words first. Safety not bravery
I once gave a scientific talk to a group of gastroenterologists which was also attended by a smattering of non MD Crohn's patients. As I brought up the subject of Crohn's personality - almost to a one - the MD heads in the audience nodded while the patients in the group looked irritated.
I had one patient come up and very irrately tell me off on the subject of the Crohn's personality. Funny - but in her tirade she exhibited almost every characteristic outlined in the med lit relative to Crohn's personality. Shortly there after her MD/Gastro came up to me and said she was his patient and he was trying to fire her as a patient for her extremely difficult Crohn's personality.
I have seen the same with Rheumatologists relative to Fibro patients. I see both sides of the coin here - Rheum's are frustrated because they have so little that is FDA approved to treat Fibro and Fibro's tend to be rather vocal about a large bevy of bizarre symptoms that make the average Rheum want to scream. Many Rheum's limit their practice on Fibro patients to no more than 5 or 10% of their total patient load and others refuse to accept them all together. Fibro's are a seriously underserved pt community.
No matter what the disease - when its a difficult disease - it's often a difficult doctor / patient relationship - doctor's don't always have clear FDA approved cures/treatments and patients frequently have chemical/disease changes which add fuel to the fire of a difficult/doctor patient relationship. It's hard to help people who are acting like a pain in the keister - even if it is the disease contributing to the problem. Doctors are human too. And of course patients are miserable and just want to be helped.
All that being said - I stayed up all night last night reading about organic brain changes in MS patients. My husband clearly has many of them. What I am really wondering is ---- has anyone had any experience with resolution or dramatic improvement in what for me are probably some deal breaker disease issues?
Daisy - Husband on CAPi 5/07. Minoi, Roxyi, Diflucan round two 1-31, Rifampin, Bactrim DS, Prednisone, Novantrone, Doxyi, Azithromycin, Flagyli
Daisy - Husband on CAPi 5/07. Husband died from Acute Myelogenous Leukemia Secondary to the Infusion of Novantrone. Ie - the treatment with the conventional MSi drugs killed him.
Daisy on her own CAP 11/2012.
Daisy,
I must second Jim's comment on your bravery.
Your post on Crohn's is fascinating. It seems that Crohn's is associated with extensive MS-like MRI white-matter changes. [Geissler A, Andus T, Roth M, et al Focal white-matter lesions in brain of patients with inflammatory bowel diseasei. Lancet. 1995 Apr 8;345(8954):897-8.
Inflammatory bowel diseasesi are often associated with extra-intestinal manifestations, such as arthritis and iritis/uveitis. Using magnetic-resonance imaging we found hyperintense focal white-matter lesions in the brain in 20 of 48 (42%) patients with Crohn's disease, in 11 of 24 (46%) patients with ulcerative colitis, but in only 8 of 50 (16%) healthy age-matched controls (relative risk [95% CI] vs controls 2.6 [1.3-5.3] and 2.9 [1.3-6.2], respectively). These findings may represent another extra-intestinal manifestation of inflammatory bowel disease.]
Five years ago I saw a patient with Crohn's, new onset asthmai and various neurological symptoms and a really high immunofluorescence titre (1:2048) who had the strangest mind-set I have ever seen. Well-educated, with a commanding presence, she could reduce you to a nervous wreck with an assured dexterity; her reasoning was slightly off-key; it was impossible to get her out of the office. I used to get one of the technicians to summon me away on spurious urgent business.
Sojourner - thanks for your interesting post.
D W - [Myalgia and hypertensioni (typically 155/95.) Began (2003) taking doxycycline and macrolide and later adding metronidazole. No medication now; just supplementsi and IR sauna. Morning BP typically 110/75]> has anyone had any experience with resolution or dramatic improvement in what for me are probably some deal breaker disease issues?
abnormal mood shifts, anxiety, affective instability, outbursts, aggression, rage, suspiciousness, and paranoia.
None of those characteristics are unique to MS is any way. Indeed they all pretty much fit the profile of mercury poisoning, and possibly many other chronic conditions. I guess the bottom line is that when your basic chemistry is screwed-up so is your mind, which isn't a huge leap of faith (unless you are a psychiatrist) and indeed is embodied in the ancient saying "Healthy body, healthy mind".
I had 2 very severe porphyric attacks during my CAPi. Probably something to do with the fact that I never took any anti-pophyric measures! Anyway big problem easily solved with welchol. The symptoms were almost entirely psychiatric and quite severe. I had all the above symptoms and more to boot.
Anger and irritability are also something I have had to deal with as they are 2 of the prime symptoms of mercury poisoning. Sauna has been a huge help in that regard. Taking a sauna would make me very very angry when I started a couple of months back. Not any more.
Finally let me talk about cognitive function & depression. I've had these in abundance over the last 6 months or so as my CAP regime became ever weaker. Both were solved almost instantly when I followed your advice (and others here) to go more agressive in my treatment. I had even written down that I should do this somewhere but didn't have the wherewithall to actually carry it out.
I firmly believe that the brain is the most sensitive organ of all, and it manifests the effects of chronic disease most severely. I also believe that it is the most resiliant organ of all, and the quickest to recover.
So to answer your question, yes I've seen dramatic improvement and resolution in the symptoms you mention.
CFSi. Started CAP 03-07.
Currently: Roxi 600mg + Doxyi 200mg . 10 Pulses done. Sauna every other day. D 7200IU
Thanks for the post Daisy,
I have the symptoms Garcia outlined in post. I have done 2 pulses in 6 weeks & getting the anti porphyriai under better control (I am finding the Chitosan very helpful so far)
The thing with me is I was diagnosed with depression 9 years ago & that is a roller coaster of a ride. Now I think it is CPni related or at least the toxins affect my brain. My husband has been commenting on my temper but I think it is more about the aggressiveness I experience due to toxins. I am just not taking any crap from anyone, lol
The physical & psychological are connected. I say this in the comfort of our little community because I know we don't think, for the most part, our illness is "made up" in our minds & then becomes physical. There are MANY out there who still believe this very thing. Some of those would have us medicated up the wazoo as the solution to our psychological woes, afterall, we are nutS!
One from my flock has just been admitted to a psych ward for suicidal thoughts. She has the generally falling aparti syndrome, she is ill! I am working at getting her here, making the horse drink is a whole other issue.
Be well everyone
CFIDSi/ME 25yrs, FMSi, IBSi, EBVi, Cpn, (insomnia - melatonini, GABA, tarazadone, triazolam, novocycloprine, allergy formula, 3 gm tryptophan), Natural HRT peri-M, NACi 2.5 gm, 6-07 Doxy 200 mg day pm, Azith 375 mg M/W/Fday, 2-6-08 7th pulse 2 X 375 mg 2day+
CFIDSi/ME, FMSi, MCS, IBSi, EBVi, CMV, Cpni, H1, chronic insomnia, Chronic Lyme, HME, Babesia, Natural HRT-menopause, NAC 2.4 gm,Full CAP 6-2-07, all supplementsi+Iodorol, Inositol-depression, ultra Chitosan, L lysine Pulse#27 04-19-10 1gm Flagyli/day-5 days<
"At Mac's suggestion, I am starting a discussion topic on CAPii treatment and its Outcome on MSii issues that we don't normally discuss on this site.
Cognitive and personality symptoms of those with MS.
My question for discussion is what benefits or improvements in the so called MS personality type, if any at all, as well as other documented issues below experienced as a result of CAP?
We mostly talk about walking and balance here relative to MS but these issues are in someways more important to overall quality of life for MS'er and MS'er's family."
It always irritates me that people are so bothered with walking and balance when talking about multiple sclerosis improvements during CAP, as though nothing else really matters. I'll tell you this: if I now was stuck in a wheelchair because of some awful lesion in the Spinal column that couldn't be fixed but was as clear in my mind as I am today, I would still be thankful. I have no idea when I first contracted CPn, probably in my teens, but my first recorded MS symptom was when I was 24. I am now just 50 (a young one, though!) Cognitive impairment often starts young, often imperceptible at first. With me, for about 15 years, between relapses, which were quite far apart and not then overly severe, my walking was fine, my balance also except I was a bit clumsy when walking on uneven ground.
Mentally I was changing, though, even before my first symptom. I was always top of the year at school and much was expected of me. Instead I chose to go to art college and turned down all five offers of university places. I could easily have been an architect and painted in my spare time. At 24 I had just abandoned my post graduate teaching course because I just suddenly decided that I didn't want even to be a high school teacher, then a few months later came my numb leg. Between then and meeting David when I was 35, I had a few minor, quickly resolving relapses, but I was growing increasingly reckless, going on cycling holidays abroad, completely by myself, walking over a high Roman aqueduct without anything to stop me being blown off, that sort of thing.
My disease started to become progressive just a few years after we got married, but became really bad in 2001, with a really big relapse when for a few weeks I found I could hardly walk at all, not even from the kitchen to the dining table. By this time, I couldn't make decisions, I laughed very inappropriately and would walk through doors that someone was holding open for me and just let it slam in the face of the person following me. My reaction time was also drastically slowed and I nearly let an upright piano fall on me in an auction showroom, saved by a stout farmer's wife in from the country.
After starting antibioticsi, most things apart from reaction times sorted themselves pretty quickly and left me feeling rather embarrassed when I realised how I had been. Reaction times have now improved a lot: David can now unexpectedly throw a cork at me, saying "catch" and I do. Actually, the making decisions thing had been going on for longer, thinking about it: people here in Bedford who didn't know me thought I was shy and obedient because I was constantly looking at DW and asking him what he thought. Now I make my own decisions again.
Longest away things have taken longer to change, but they have done: now I feel that I was wrong in going to art college and I have advised several people to think twice, study whatever is your best subject apart from art because you will find time to do it as well. I do realized, though, that the best thing I can now do is to work as hard as I can with my art and not get depressed about making the wrong decision. So what would I be like without CAP? Useless if not dead. I feel brighter and clearer in the head than I have done for years, not just these last few years, so I guess I am going against the normal MS rule book and Daisy, I think your husband will as well..........Sarah
An Itinerary in Light and Shadow...........Completed Stratton/Wheldon regime for aggressive secondary progressive MS in June 2007, after four years, three of which intermittent. Still slowly improving and no exacerbation since starting. EDSSi was 7, now 2, less on a good day.
I was diagnosed with MS 18 months ago and before then I had no problems, I was very fit and healthy playing lots of tennis, skiing and surfing. So it really came with no forewarning.
My first problem appeared when going for a walk when on holiday in Ireland, after about 20 minutes my right side started to seize up and I struggled to walk properly. This has become a familiar fact of life for me now. When I had my MRI and was diagnosed, very clearly by the radiologist, I had no inking that this illness could affect my mental faculties.
After some research I quickly went on a low saturated fat diet and re-committed to a regular exercise program and by Xmas I was in good shape, I had lost weight and felt good. I decided to go skiing with my family in January (2007). I joined a snow boarding group and was put in the advanced group (I had wanted to start in a lower group, but they wanted me in the adv group and I guess my ego was engaged). Anyhow, the group (that had been going for a few days already) immediately set off for some adventurous off-piece snowboarding. It was physically very demanding and I kept it up for 2 hours, but then my leg 'went' and suddenly I could hardly move it. I had no control of the board and had to drag myself back to the hotel.
This exhaustion seemed to have a very bad affect on me as I started to experience dizziness and at times I could not stand up, or look to either side. I though that maybe this was altitude sickness, but it continued for weeks after I got home. When I went to see an 'expert' MS neurologist in February, he thought it was probably a second attack. What was shocking to me was the fact that this was affecting my ability to think and perform mentally.
During the summer, although my new symptoms subsided to a degree, they didn't go away completely and during this time I was struggling to work and think straight. My wife felt that I was removed and noticed a glazed expression and I think for the first time she was very worried.
In July I came across David Wheldoni's site and this one. I started NACi in late July and my first Flagyli pill in early October. So I am about 6 months in.
My leg is no better, I have felt that it was at times, but now it seems to be pretty consistent in it's disfunction. Mentally though I am much better. I don't suffer from dizziness or an inability to focus. I am generally very sharp and on the ball.
Looking back, I think that I was in a quite rapid decline, had I not started the CAPi when I did I don't know what state I would be in now, but it wouldn't be pretty. I believe that the CAP has stopped the illness developing further and has restored my mental functioning.
I really hope I get my leg back, because my tennis level has been reduced to that of a hacker, but I agree with Sarah, without my mental ability I wouldn't have a life.
Malcolm
Doxyi 200mg since 13 Sep 07 (100mg since 26 July 07), Nac 1200mg since 27 July 07 (600mg NAC since 9 July 07), Azi 250mg 3xweek since 31 Aug 07, Flagy pulses started 3 Oct 07, diagnosed MS Aug 06.
Malcolm
Wheldon Protocol since July 07. Doxyi 200mg July 07, Naci 1200mg July 07, Azi 250mg 3xweek Aug 07, Flagyli pulses Oct 07, diagnosed MSi Aug 06. Intermittent Aug 08.
Part two: DW (the family.)
David married me with the thought at the back of his mind that I had MSi but at the time I was not very much affected. A few years later, though, things began to change. He could see the cognitive changes and began to despair. Whereas the previous time we had been walking in France I could do 25 miles of tough terrain without even feeling tired at the end, this time I could barely do four miles without dragging my feet. I nearly got him run over in Carcassone and wondered why he got upset. I couldn't understand why he was getting so angry and thought he must have gone off me or found someone else. So I would spend a lot of time being depressed and crying, but not for the right reasons.
When my mind cleared and I saw how I had been I realised what I had been putting him through and I felt so bad about this. He had already been through this with his father, whose genetic disease had eventually made him bed bound and unable to do anything himself and I was just repeating things, though not as yet so bad. For several years I had been impossible and I didn't realise it: he was often at his wits end. He is only just recovering from this now, having thr first prolonged break from work for years and writing his first novel since I met him. I am so thankful for everything he has done........Sarah
An Itinerary in Light and Shadow...........Completed Stratton/Wheldon regime for aggressive secondary progressive MS in June 2007, after four years, three of which intermittent. Still slowly improving and no exacerbation since starting. EDSSi was 7, now 2, less on a good day.
Malcolm, My husband Steve has probably had MSi since childhood, but it progressed very slowly until his early 40s. The pace increased little by little after that, and it really accelerated about 3-1/2 years ago after he turned 50. He was diagnosed in January 2005. Today he has a very low-level job at an electronics manufacturing facility of the same type and size of which he was once the general manager. His salary is about 1/3 what it once was. His industry's presence in the US has withered away as business has gone overseas, but the gradual decline of his cognitive function has so much more to do with why he does not have a better-paying position.
I'm very glad for you that you started the CAPi so soon after the onset of your symptoms. If you had spent any time on one of the CRAB drugs, your infection(s) would have been allowed to run more rampant than before. Like you and Sarah, I value the cognitive function much more than the physical abilities, and I'm sure Steve would agree as well. We were both in denial when he got the results of his first neuroi-psych evaluation, but after awhile, we both knew it was true. Steve and I have only been married for 10 years. When we have travelled, I have always been the navigator. All this time I thought it was simply for the reason that I'm good at it (which I am). A few weeks ago I learned that he can't read a map. It was shocking to me even though I know his cognitive dysfunction has worsened over these last several years. Now, teaching Steve to read a map again is a particular goal I have in mind for his recovery. I refuse to believe that it will never happen.
Joyce~caregiver-advocate in Dallas for Steve J (SPMSi). CAP since August 06, Cpni, Mpn, B. burgdorferi, systemic candidiasis, EBVi, CMV & other herpes family viral infectionsi, elevated heavy metals, gluten+casein sensitivity.
Joyce~caregiver-advocate in Dallas for Steve J (SPMSi). CAPi since August 06, Cpni, Mpn, B. burgdorferi, systemic candidiasis, EBVi, CMV & other herpes family viral infectionsi, elevated heavy metals, gluten+casein sensitivity.
An Itinerary in Light and Shadow...........Completed Stratton/Wheldon regime for aggressive secondary progressive MSi in June 2007, after four years, three of which intermittent. Still slowly improving and no exacerbation since starting. EDSSi was 7, now 2, less on a good day.
Thanks Joyce, I have probably had MSi for longer than I realise. I am now 42, so similarly to Steve it became apparent when turning 40. I have been umming and arhing about getting a new guitar, but reading your and Sarah's post I think it would be a great tool to exercise my mind and coordination.
BTW to all the carers out there, I really don't think I would be able to look after someone for long, it must be a tough, tough role. So hats off to you all.
Malcolm
Doxyi 200mg since 13 Sep 07 (100mg since 26 July 07), Naci 1200mg since 27 July 07 (600mg NAC since 9 July 07), Azi 250mg 3xweek since 31 Aug 07, Flagy pulses started 3 Oct 07, diagnosed MS Aug 06.
Malcolm
Wheldon Protocol since July 07. Doxyi 200mg July 07, Naci 1200mg July 07, Azi 250mg 3xweek Aug 07, Flagyli pulses Oct 07, diagnosed MSi Aug 06. Intermittent Aug 08.
MSi personality, Crohn's Personality, Fibromyalgiai personality, Lyme rages are all features of the common denomonator of chronic inflammationi.
A more proper description would be the inflammation personality.
I have Crohn's disease and had depression on and off since I was a teenager. I am forty six now. Large amounts of natural antiinflammatory supplementsi brought both my Crohn's and my depression under control. Since then I have addressed the cause using various methods.
No real rage for me, but dysfunctional for sure due to the depression. When my wife's Lyme disease was at its worst, I saw a person that did not exist before that moment.
I have had a person with MS as a coworker and once you ticked him off, the only thing that saved you was the fact that he could not move fast. I always chalked it up to being of Serbian descent. Now I know better.
Chronic inflammation from any disease, innoculation, toxin, pathogen has the capability of doing this to anyone. Unfortunatly, I am included in that group.
D Bergy
I read with interest about your comment on map reading though I don't have MSi. It is hell for me to navigate & follow a map. When I am fatigued it is even worse. I have been going to some garage sales, by myself here in AZ. I have to map them out in writing the night before I go, double check them & even so, I mess them up!. I get confused easily & turned around which adds to my frustration, but I muttle through it. I still have the fog though it is getting better overall!
Keep up the super work Joyce, you are an awesome caregiver & I bet, one hell of a navigator!
CFIDSi/ME 25yrs, FMSi, IBSi, EBVi, Cpni, (insomnia - melatonini, GABA, tarazadone, triazolam, novocycloprine, allergy formula, 3 gm tryptophan), Natural HRT peri-M, NACi 2.5 gm, 6-07 Doxy 200 mg day pm, Azith 375 mg M/W/Fday, 2-6-08 7th pulse 2 X 375 mg 2day+
CFIDSi/ME, FMSi, MCS, IBSi, EBVi, CMV, Cpni, H1, chronic insomnia, Chronic Lyme, HME, Babesia, Natural HRT-menopause, NAC 2.4 gm,Full CAP 6-2-07, all supplementsi+Iodorol, Inositol-depression, ultra Chitosan, L lysine Pulse#27 04-19-10 1gm Flagyli/day-5 days<
Thanks guys. Call me Brenda.
Joyce~caregiver-advocate in Dallas for Steve J (SPMSi). CAPi since August 06, Cpni, Mpn, B. burgdorferi, systemic candidiasis, EBVi, CMV & other herpes family viral infectionsi, elevated heavy metals, gluten+casein sensitivity.
Joyce~caregiver-advocate in Dallas for Steve J (SPMSi). CAPi since August 06, Cpni, Mpn, B. burgdorferi, systemic candidiasis, EBVi, CMV & other herpes family viral infectionsi, elevated heavy metals, gluten+casein sensitivity.
Lexy - Thanks for the link to Virginia Sherr - I poured through it last night.
Funny but for the past couple of months when people ask me what's wrong with my husband - I no longer say he has Balo's Concentric Sclerosis. I say he has an infection in his brain that we are treating - rings closer to the truth for me plus I was tired of explaining Balo's.
Thanks for your insightful view.
Daisy - Husband on CAPi 5/07. Minoi, Roxyi, Diflucan round two 1-31, Rifampin, Bactrim DS, Prednisone, Novantrone, Doxyi, Azithromycin, Flagyli
Daisy - Husband on CAPi 5/07. Husband died from Acute Myelogenous Leukemia Secondary to the Infusion of Novantrone. Ie - the treatment with the conventional MSi drugs killed him.
Daisy on her own CAP 11/2012.
DW - Two years ago I had an employee with very severe Crohn's disease. She mimicked your patient as described above to a tee. When she resigned and moved on to another company - I was relieved- everyone seemed to be. Even when you know it's the disease contributing to the personality difficulties - everyone is still human and difficult people illness or no - are well - difficult to be around.
Daisy - Husband on CAPi 5/07. Minoi, Roxyi, Diflucan round two 1-31, Rifampin, Bactrim DS, Prednisone, Novantrone, Doxyi, Azithromycin, Flagyli
Daisy - Husband on CAPi 5/07. Husband died from Acute Myelogenous Leukemia Secondary to the Infusion of Novantrone. Ie - the treatment with the conventional MSi drugs killed him.
Daisy on her own CAP 11/2012.
Garcia and Ruth - Thanks for sharing your experiences. I am glad things are looking up for both of you and it does hold out some hope of resolution of these very difficult issues (for me at least).
I really appreciate you sharing this information.
Daisy - Husband on CAPi 5/07. Minoi, Roxyi, Diflucan round two 1-31, Rifampin, Bactrim DS, Prednisone, Novantrone, Doxyi, Azithromycin, Flagyli
Daisy - Husband on CAPi 5/07. Husband died from Acute Myelogenous Leukemia Secondary to the Infusion of Novantrone. Ie - the treatment with the conventional MSi drugs killed him.
Daisy on her own CAP 11/2012.
Malcolm - Thanks for posting your story and experience.
I am actually very optimistic for you to make an amazing recovery as like Mackintosh you caught it early and are treating it as an infection quickly. You may well be one of the more successful treatment stories here someday!
I hope in addition to your mental function returning - your physical abilities catch up quickly and you are back on the court soon. It was my husband's passion - tennis - and I know he misses it quiet a bit.
Daisy - Husband on CAPi 5/07. Minoi, Roxyi, Diflucan round two 1-31, Rifampin, Bactrim DS, Prednisone, Novantrone, Doxyi, Azithromycin, Flagyli
Daisy - Husband on CAPi 5/07. Husband died from Acute Myelogenous Leukemia Secondary to the Infusion of Novantrone. Ie - the treatment with the conventional MSi drugs killed him.
Daisy on her own CAP 11/2012.
D Bergy - Hi - I haven't met you yet here - but glad to see your response in this topic. Welcome to the board!
I think your post here is very well written and thoughtful to boot. Thanks for taking the time to post it !
Daisy - Husband on CAPi 5/07. Minoi, Roxyi, Diflucan round two 1-31, Rifampin, Bactrim DS, Prednisone, Novantrone, Doxyi, Azithromycin, Flagyli
Daisy - Husband on CAPi 5/07. Husband died from Acute Myelogenous Leukemia Secondary to the Infusion of Novantrone. Ie - the treatment with the conventional MSi drugs killed him.
Daisy on her own CAP 11/2012.
I am new here.
I find this treatment fascinating because I also suspect that pathognic bacteria and or viruses influence or directly cause some of these autoimmune diseasesi.
I mostly read here to try to add to my amatuers knowlege of how these diseases work. I have Crohn's, my daughter has Celiac and my son has Hidradenitis Suppurativa. I am quite sure they are all related diseases, possibly with a genetic factor and likely a trigger bacteria.
I hope by understanding MSi and other autoimmune diseases I can gain some insight into these other diseases. As with MS, there are no a lot of good treatments available for any of these diseases in the standard medical model.
I am still not sure how most people are responding to CAPi treatment. Is this improving the disease in most people?
Thank you.
D Bergy
Sarah you posted "For several years I had been impossible and I didn't realise it: he (DW) was often at his wits end. He is only just recovering from this now". So many comments in your posts in this thread really struck me head on. This comment in particular.
How did David survive those years and keep his wits? I am so open to strategies on this one. For me that's not a facetious question - its a quiet serious one.
I really appreciate your taking the time to really lay out your story from the cognitive function/ personality view. It's hopeful to me that you not only recovered some energy, stamina, arm use, walking, cognitive function but also you became more of your normal self personality wise.
Thanks again for posting so openly on this subject.
Daisy - Husband on CAPi 5/07. Minoi, Roxyi, Diflucan round two 1-31, Rifampin, Bactrim DS, Prednisone, Novantrone, Doxyi, Azithromycin, Flagyli
Daisy - Husband on CAPi 5/07. Husband died from Acute Myelogenous Leukemia Secondary to the Infusion of Novantrone. Ie - the treatment with the conventional MSi drugs killed him.
Daisy on her own CAP 11/2012.
Rica PPMSi EDSSi 6.7 at beginning - now 2. Began CAPi Sept, 2004 with Rifampin 150 mg 2xd, Doxyi 100 mg 2xd, added regular pulses Jan 2005. Jan 2006 switched to Doxy, Azith, cont. flagyli total 49 pulses NC USA
3/9 Symptoms returning. Began 5 abxi protocol 5/9 Rifampin 600, Amox 1000, Doxyi 200, MWF Azith 250, flagyli 1000 daily. Began Sept 04 PPMSi EDSSi 6.7 Now good days EDSS 1 Mind, like parachute, work only when open. Charlie Chan In for the duration.
Daisy, you said this: "How did David survive those years and keep his wits? I am so open to strategies on this one. For me that's not a facetious question - its a quiet serious one."
My serious answer is that a) he tried to put out of his mind the fact that I not only had MSi but was getting very much worse and fast. And b) he would snap at me in frustration, which had the effect of making me think that he really thought he had made a mistake in marrying me. I didn't think there was anything wrong with me, you see. He did write poetry all this time, but much of it was very dark. How different now: happy poems and the first new novel since he met me.
This is why I don't think you need feel bad about the way you respond to your husband sometimes. When his mind properly clears he will just be thankful that you got him through all this..........Sarah
An Itinerary in Light and Shadow...........Completed Stratton/Wheldon regime for aggressive secondary progressive MS in June 2007, after four years, three of which intermittent. Still slowly improving and no exacerbation since starting. EDSSi was 7, now 2, less on a good day.
Daisy you ask if anyone has seen significant improvement of serious psychiatric symptoms on CAPi; I have, but I'm not sure how it relates to your husbands experience, it might not be what you want to hear either.
In the three years before starting CAP I had several psychotic episodes with paranoia, delusions and hallucinations: because they were caused by the brain infectionsi they got worse during the early months of treatment. This psychosis wasn't continuous, it came in episodes lasting sometimes 2 or 3 days sometimes a week or two. In between I would go back to 'normal', not my real pre-lyme self but a state of being able to give the impression of functioning well enough to be allowed home..........yes allowed home as at times the episodes were so bad that my husband couldn't cope and had to call in doctors who took me into the hospital psych ward. That is the worst possible place for someone suffering from psychiatric symptoms...... believe me the stories you have heard about those places are true. They diagnosed bipolar disorder and when I was lucid again the consultant psychiatrist considered all the evidence we showed him and agreed that my problems could be caused by lyme and Cpni yet 'couldn't' prescribe antibioticsi, they left that to my private LLMD. Astonishingly he admitted to my husband that they don't have the time to treat mental illnesses properly in the NHS, they mainly just act as a resource to hold people when they are very ill.
Although I have a clear memory of everything that happened I completely lacked insight at the height of these episodes , as they waned it would return and I would see how bad it had been, understand why he found it impossible to cope and had to resort to such desperate measures yet at the time I felt betrayed by the only person I trusted; it has changed our relationship, that probably sounds very unfair but I'm not making any judgements on either of us, just telling you how it is in this cruel illness.
If you believe that your husbands problems are being caused by the infections and that the CAP will clear them and if you also expect his recovery to continue at the recent rate then I would urge you to seriously consider finding someone to care for him and continue his treatment at your home while you go away to that spa. You mentioned a nursing service.....sell the car, the dog, anything to get this rather than putting him in the 'care' of the psychs. I don't know how it works in your country but here they can forcibly keep you in hospital under the Mental Health act if they think it is for your own good, once someone recovers then the fact that they have been diagnosed with mental health problems works against them in many instances, especially when trying to resume a professional career..........no stigma attached to mental health problems????? ..........pull the other one.
Keeping him out of their clutches would probably be better for you both in the long run but you clearly need a break and for both of your sakes it should be soon and for a decent length of time, if there really is no alternative then you'll have to go that route and deal with the fall out later when he completely recovers.
There are no easy answers to this, we can't know for sure what is going on in someone else's head, I'm just trying to give you a patients point of view and an opinion of what might happen. In my case the psychotic symptoms have improved dramatically, dare I even say disappeared completely, after two years and 28 pulses but such experiences cast a shadow..........
Elinor ..... from England on CAP, doxyi/roxi/tini for ME/CFSi/lyme borreliosis, positive Cpn and borrelia. Started Aug05, stopped Jan06, started again Sept 06.
Daisy,
I think what kept me going during the worst of Sarah's illness was the memory of my mother, who died in 1996. She was one of the most courageous women I have ever met; frequently in Sarah's darkest hours I would feel my mother's presence. I'll tell you a little about her.
She was born in rural Somerset in 1917, the first of a large and rather poor family. The family surname was Sturgeon, a name acquired when an ancestor, William de Radcliffe, took boat to Ireland with his family. He had had a dispute with King Henry VIII and feared for his life. It was wise for him to change his name. He was discussing possible names with his wife when (the boat being becalmed) a seaman, fishing, caught a sturgeon. That's what the family called themselves.
My mother was to have been called Elizabeth Sturgeon, but her father got drunk on the way to the registry office and called her after an old flame, Florence.
She grew up to be a slim, tall, intelligent young woman of commanding beauty - she had slightly red, fair hair down to her waist - at a time when women's intelligence was hardly recognised. Today she would have been an academic. She wanted to study English. She was fortunate to be able to train as a nurse in Bristol. She enjoyed nursing children, and quickly became a Surgical Ward Sister at the Children's Hospital in Bristol. In itself the work was demanding; the hospital was pioneering the surgical treatment of infantile pyloric stenosis. These babies require skilled nursing, as fluid and electrolyte balance is vital, and the equipment of the time was primitive. Their results were good.
Her courage came to the fore when, one night after the phoney war, she heard a low-pitched droning sound. She looked out of the ward windows. A vast nocturnal aeronautic display seemed to be approaching the city. People went out into the streets to admire it. Then, when this aerial armada - in precise formation - was overhead, the bombs rained down. There were six major air raids in five months. In one night in 1940 about 5,000 incendiary and 10,000 high explosive bombs were dropped on the centre of the city. My mother could look down from the windows of the ward and see the city afire. Many of the children were too ill to be moved to the shelter, so my mother remained with them, they and she uniquely vulnerable. One night the operating theatre received a direct hit. The powerful operating lamp pointed upwards at the sky, and a short-circuit caused it to light up. A better beacon to summon enemy bombers could not have been lit. She and a medical student (at some danger of electrocution) managed to bring the light down and turn it out. Once, while walking down a busy Park Street one Saturday morning, she saw that numbers of people were falling down. This was a roof-level attack by an enemy fighter who was machine-gunning civilians. And she was tempted in her duty. When she went home to her village in the country for an infrequent weekend, her father would plead with her to stay in safety and not to go back to the destruction. But she quietly ignored him, and returned by train to Bristol. The railway journey itself was sinister. Blackout was enforced, but the sparks and glow of the firebox opening allowed the enemy to track the steam locomotives. When the train stopped at intermediate stations, she would hear the drone of circling aircraft waiting for the train to lead them to the city. The railway itself was a rich target.
She had sorrows. She lost her first-born (my brother) in early childhood, and her husband developed an adult form of muscular dystrophy, through which she nursed him for over twenty years until his death at 62.
She and I were very close, and had an extra-sensory bond. When she was dying, in hospital, rather unexpectedly, I felt her summoning me and I ran to her bedside and spoke to her, and held her hand while she died.
There are many unsung people, but I thought my mother deserved a small encomium; in the dark days I often prayed to her memory, and she never let me down.
D W - [Myalgia and hypertensioni (typically 155/95.) Began (2003) taking doxycycline and macrolide and later adding metronidazole. No medication now; just supplementsi and IR sauna. Morning BP typically 110/75]I'm following this discussion with vast appreciation of the communal interchange and quality of comments. I'm traveling, so no time to think things through. I can attest to the shift in David's writing tone. He kindly sent me some stories and I quite enjoyed the richness of detail in invoking place, the air of fond nostalgia and remembrance, and the adventurous dream states integrated into the stories. I suspect being freed from hospital work also has opened much inner space for you, David, as well as Sarah's recovery!
Elinor- I'm so glad you commented. Watching the huge degree of your mental change from having addressed both sources of infection (Lyme & Cpni), and especially discovering the very serious impact of porphyriai and the great extent to which it was affecting you, was one of the more satisfying and visible changes I've seen for someone on this site over the years. Although I have to add, for D Bergy, there have been many clearly recorded changes for many people (yes, not all) if you scan the blogs over time.
David- in addition to the works you kindly sent me, your "encomium" (I had to look it up) for your mother is, like your stories, very evocative of time and place as well as person. I can see the dark Bristol skies and grey buildings of the night lit by flashes as the bombs flared, and think of your mothers courageous spirit, waving it all to the side to get that light put out. I know of the psychic bond of which you speak. It's one of those things that makes it clear that we have connections cross time and space in ways we cannot fathom, though we can know it and feel it. At times I read others posts here and have that deeper sense of tracking their struggles not just through their words and tone, but through some connection to their person. Forged, perhaps, by mixing lives, thoughts and hearts.
CAPi for Cpn 11/04. Dxi: 25yrs CFSi & FMSi. Protocol: 200mg Doxyi, 500mg MWF Azith, Tinii 1000mg/day pulses; Vit D1000 units, INHi 150mg, Magnascent Iodine 20 drps/day, T4 & T3
CAPi for Cpni 11/04. Dxi: 25+yrs CFSi & FMSi. Currently: 250 aithromycin mwf, doxycycline 100mg BIDi, restarted Tinii pulses; Vit D2000 units, T4 & T3, 6mg Iodoral
Personality changes brought on by illness.
My experience of the expression of personality in both of my daughter and my husband during their illness was unforseen by me but once it happened I recognised it as a common trait of people with failing health and severe loss of self.
I had occasion for looking after my dying grandmother Yvonne, and also supporting my mother in her care of her, and remember the tone of voice, the petulancy, the irrationality and the constant demands for care and need for reassurance. I attached it to the fact that she was frail, dying and had led the life of a spoilt child, at least in the time I had known her. She had been a courageous and hard working woman in the war, whose family survived reasonably well fed in occupied Belgium through her regular trips to family in the courtry side smuggling food back into Brussels.
What I saw in her in her dying months was not a completely new expression of her character, more an enhancement of what was occasionally apparent when she was angry or resentful in earlier times.
What I have seen in my husband and daughter is a similar enhancement of their negative chracteristics. The potential is in all of us, and when circumstances make our life difficult and painful the negative aspects surface more frequently than usual.
Brain fog, confusion and loss of memory may be more related to infection than anger and negative attitude but it contributes to the general malaise that tests people's patiences and good humour. When my loved ones were very ill, and even now when things go wrong their dark side emerges. We have all got a dark side, when we are well we are able to control it, when we are ill our control is weak and our thin layer of social behaviour becomes permeable.
Michèle (UK) GFAi: Wheldon CAPi 1st May 2006. Daily Doxyi, Azi MWF, metroi pulse. Zoo keeper for Ella, RRMSi, At worse EDSSi 9, 3 months later 7 now 5.5 Wheldon CAP 16th March 2006
Michèle (UK) GFAi: Wheldon CAPi 1st May 2006. Daily Doxyi, Azi MWF, metroi pulse.
Willow - your intelligence (and memory) still shines through in your posts.
My husband graduated from a top engineering school with honors - his last IQ test by the neuropsychologist - he almost didn't have one.
Amen to this is "one nasty head-space to live through".
Daisy - Husband on CAPi 5/07. Minoi, Roxyi, Diflucan round two 1-31, Rifampin, Bactrim DS, Prednisone, Novantrone, Doxyi, Azithromycin, Flagyli
Daisy - Husband on CAPi 5/07. Husband died from Acute Myelogenous Leukemia Secondary to the Infusion of Novantrone. Ie - the treatment with the conventional MSi drugs killed him.
Daisy on her own CAP 11/2012.