What do I do now?

    The reaction to a diagnosis of periodic paralysis may be relief, shock, grief, despair, or any combination of emotions. It takes time to adjust to a chronic illness. Long cherished plans and dreams may have to be abandoned, some temporarily, others forever. For a time it may seem that the dominant focus in one's life is periodic paralysis, but as the news sinks in and adjustment comes a new balance can be achieved.

The fact that one has a chronic illness is eventually assimilated and the necessary adaptations are made.   As the patient becomes aware of his own personal pattern, and learns to work within it, life is not so constricted. Physical limitations can usually be worked around or planned around, though most periodic paralysis patients have to live with some amount of physical disability.   

Grief For “Old” Self

Symptoms of periodic paralysis often develop rapidly, and one morning you awaken unable to move. The contrast between before and after is sometimes sharp. The diagnosis may be devastating, like the sudden and unexpected death of a loved one. For a patient who has episodes for years without understanding the reason the diagnosis (at last!) may initially come as a relief, but when that sense of relief fades there is still a sense of loss.

The patient may feel as if they are riding a physical and emotional roller coaster. This is to be expected. The formerly reliable body has assumed a new and unpredictable aspect. There may be a change in roles when a wage-earner or homemaker becomes partially or totally dependent. The side effects of medications may be uncomfortable. All this would be stressful for a healthy person to deal with. It is even more difficult to cope when in the grip of illness.  

Patients often go through a grieving period similar to that  associated with other kinds of loss. And, as with any loss, grief must be worked through before the integration of this new aspect of the self can occur.  Some people will not allow themselves to grieve or will not acknowledge their grief. But grief is a natural process, a kind of journey, during which one comes to terms with life. Grief follows a recognized pattern which has five stages.  

Stage 1: Denial

An emotional numbness descends after any significant trauma. For a time the person may not feel anything at all, may deny that anything is wrong, or deny that what has happened has affected them deeply. This denial may be emotional, verbal or physical, as in the patient who refuses to slow down and rest, but continues to push from one crisis to another.   

Stage 2: Anger

“Why me?” a patient may ask. “I've been a good person, I don't deserve this!” Anger is sometimes directed at the doctor, the hospital, the medical establishment, family, friends, God, the family dog or any other nearby person or object. It's helpful to realize that this anger has its roots in frustration, disappointment, fear and emotional pain. Even when we are angry it's appropriate and necessary to let those around us know that they are not the source of our anger.   

Anger is something we must take personal responsibility for, and work through. It's been taught for years that we shouldn't hold anger in, that it's better to “let it all out”. But new evidence has proven that just the opposite is true. By following patients with implantable cardiac defibrillators (ICDs) cardiac researchers have learned that expressing anger is a potent trigger for heart attacks, unstable heart rhythms and strokes, which are increased risk factors in some forms of PP. But studies now show that angry outbursts put everyone at risk for life-threatening cardiac events. Since cardiac disease is the nation's number one killer most of us are potential cardiac patients.

Living with unresolved anger is like living in a cage with a tiger. Suppressing anger is no more healthy than expressing it. If you have anger issues and can't handle them on your own find an experienced counselor who can guide you.   

Stage 3: Bargaining

Bargaining generally doesn't last long, and may merge into the first and second stages. The futility of trying to bargain one's way out of periodic paralysis is quickly apparent to most people and is soon abandoned.  

Stage 4: Depression

Depression may arrive when we fully realize that this illness may cause long-term changes in our lives. We mourn the loss of our healthy self, and ambitions, dreams and opportunities we may have long held dear.    Depression can range from transient sadness to the total deep freeze of dysfunction. The depressed person may literally cry over spilt milk.

Depression of a minor nature may not interfere with day-to-day function, but it may make life seem dull, worthless and miserable. Serious or major depression may include a number of symptoms which signal that professional help may be needed.   

1. Change in sleeping patterns – sleeping far too little or too much.

2. Mood alterations which go on too long in relation to the cause.

3. Listlessness, lack of interest in things that formerly gave pleasure.

4. Inability to concentrate. 

5. Eating too much or too little. 

6. Inappropriate feelings of guilt. 

7. Suicidal thoughts.

8. Feeling of worthlessness.

9. Loss of interest in sex or inability to have sex.

10. Lack of energy which increases over time.

If a person has more than one or two symptoms of depression for a period of more than two weeks it is time to seek help. Should a person threaten or talk about suicide, or appear to be contemplating suicide, medical help should be sought immediately. The family physician may be able to give appropriate advice and guidance, but studies suggest that family physicians often overlook depression in patients. If the family physician is hesitant seek help from a mental health agency or professional.   

Mild depression forces us to stretch our limits and it can be a useful prod. It may make us look for alternate solutions simply because it is such an uncomfortable and miserable state of mind. Severe depression on the other hand may cause such apathy that the patient cannot marshal the force of will required to shake it. If depression is taking too long to resolve it may take professional help to affect the change from negative to positive, but it can be done, sometimes more quickly than thought possible. If medication proves necessary patients have reported low dose Paxil and Celexa to be effective without increasing weakness. 

Stage 5: Integration

When we have taken stock, evaluated what is left, and have determined to do the best we can with what we have, we have adjusted. Old dreams may be replaced by new ones, but these can be as much of a challenge and ultimately just as satisfying. Options may have narrowed, but while reevaluating our lives we may discover opportunities we never dreamed of before.   

Every patient goes through a period of adjustment. The time it takes to adjust will vary according to the individual. Some people are resilient and bounce back quickly from the stresses of life. For others it is more of a struggle. Joining a support group composed of other patients may help the newly diagnosed patient understand and come to grips with the disease. Even if you aren't a joiner by nature it's comforting to see others coping successfully with PP. A group also gives one the opportunity to compare attitudes and coping methods, because while every individual must develop their own, it helps to see what works best for someone else.   

Basically there are two ways to cope; positively or negatively. Positive methods of coping reduce anxiety, bring peace of mind and restore the patient's inner equilibrium. Negative methods cause or reinforce anxiety, isolate the patient emotionally and induce stress.  

Coping Strategies

Some Positive Methods of Coping Include:  

1.Seeking Information It's human nature to fear the unknown. Most patients want to know as much as possible about the disease. It's also helpful and of great emotional support to know how other patients manage. Information and peer support can be found through PP support groups on-line.     

2. Spiritual Consolation Gaining strength from one's spiritual values, prayer, faith communities, meditation and a belief in a benevolent Higher Power or greater purpose.   

3. Positive Thinking Remaining optimistic, and refusing to give in to the blues. Changing one's thoughts when they become sad or fearful.  

4. Talking it Out Verbalizing concerns, fears, anger with family, friends and other patients, seeking professional help when needed.  

5. Recognizing Limits Seeking to maintain a realistic level of independence while accepting the fact that some dependence on others may be necessary.  

6. Maintaining a Strong Social Network Close ties with family, friends and a strong support network are vital to both emotional and physical health. Helping others who may have just been diagnosed or are having problems adjusting is also a healthy coping mechanism.  

7. Physical Adaptation Maximize physical capabilities by analyzing the daily routine, and adapting it to conserve energy. Learning to rest when needed, rather than push beyond your capacity.  

Among Negative Methods of Coping Are:

1. Denial; Denial can take several forms, denying the diagnosis, non-compliance with treatment, or pushing the body too hard. There is a difference between saying, “I'm not going to let this get me down!”, and “I'm not going to give in to this disease an inch!” It's healthy to do as much (or sometimes a little more) as one can. It's not healthy to consistently demand more of the body than it has to give.   

2. Blaming: Bitterness or anger towards oneself or someone else is not healthy. Sometimes people feel they have become ill because they were bad, or that their worth as human beings is diminished by their illness. If we look around we see that illness is part of the human condition and we are not the only one dealing with it. Moreover, anger, bitterness or guilt interfere with the process of adjustment and may weaken our ability to heal.  

3. Focusing on Illness:  Allowing the illness to take over and control the entire life, letting it become the main focus of the thoughts, feelings and conversation or the only factor considered in decisions.   

4. Withdrawal: Isolating oneself socially, giving up friends, interests and activities unnecessarily.   

5. Depression: Sinking into apathy, sleeping too much or too little, engaging in obsessive behaviors, giving up on life.   

No one copes well all the time

It's unrealistic to expect a person with a chronic illness to always be upbeat and optimistic, but when a person is having difficulty coping a lot of the time it is useful to look at the attitudes that characterize those who cope well and poorly.   

Generally Speaking People Who Cope Well: 

1. Are realistically optimistic about being able to cope with or solve their problems and generally maintain a high level of morale. 

2. Are practical, ready to tackle immediate problems, rather than postponing action or wishing and waiting for some magical future solution to appear from thin air. 

3. Formulate a backup plan in case the current approach fails.

4. Project the consequences of their actions, reasoning from cause to  effect.

5. Listen to suggestions, but retain the right to make their own decisions.

6. Tend to be emotionally stable, avoiding emotional extremes that might impair their judgment. 

7. Are able to ask for help when they need it.   

People Who Cope Poorly:

1. Tend to have unrealistically high expectations for themselves and find it difficult to compromise or ask for help.

2. Tend to be intolerant; see only in black and white.

3. Tend to deny and rationalize to an excessive degree, rather than face the problem at hand. 

4. Find it hard to see and weigh alternatives, and postpone making  decisions until a crisis, which may worsen the situation.   These people are not necessarily ineffective in dealing with everyday life, but their inflexibility and lack of confidence hampers their ability to cope in difficult times.   

What's Going Right?

When we are under extreme stress there's a tendency to feel that everything is wrong when there are areas of life that are stable, Recognizing and drawing strength from these sources is an excellent coping mechanism.     

Coping from the Inside out:

One way to cope with stress is to turn down our reaction to it. One way to do that is through meditation. Meditation has been practiced in cultures all over the world for thousands of years. It's now being used with increasing frequency by western physicians and health care organizations to treat a diverse range of medical conditions.    The purpose of meditation is to calm the mind and restore a sense of quiet. When the mind is quiet the body can restore the delicate chemical, hormonal and electrical balance that promotes health. read more    

Adapted from, “You, Me and Myasthenia Gravis”; Third Edition; Deborah Cavel-Greant; Ed: MW Nicolle MD, FRCPC, D.Phil.; Ku:Reh Press, 2006, Used with permission, © Deborah Cavel-Greant 

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