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When someone in your life is first diagnosed with stiff-person syndrome, they will be devastated, and so might you.
Stiff-person is a rare disease. There is so little information available and so few doctors who know how to treat it. There are so many questions and the goal of this website is to answer as many as possible. Being informed is the first step to understanding the situation.
w Learn all you can about the disease, the treatment options, and the tools and resources available to help you cope.
w Your loved one may need extra help understanding how to use medications, how the medications work, and potential side effects.
w You can help them understand the complications of their disease and watch for signs of progression or worsening.
w They will need help relearning to manage day to day activities.
w They may have to make changes to their lifestyle: smoking, alcohol use, diet, exercise, and travel considerations.
w They may need help locating health and social services.
w They need a staunch advocate in dealing with health professionals uneducated in regard to stiff-person syndrome and untrained to deal with the patients suffering from it.
w They’ll need help figuring out how to manage their finances in the face of what can be astronomic medical costs.
w They may need professional help in dealing with emotions such as distrust, anxiety, depression, loneliness, isolation, insecurity, and considering their own mortality. They have a genuine fear of losing their physical independence.
w Appropriate support and monitoring is crucial to their continued well-being. There are many tools and resources offered in this website to help you help them.
w Every patient presents differently and progresses differently. There is no specific timeline. This uncertainty leads to anxiety. That is to be expected. The most important thing for you as a support system is to help the patient remain as functional as possible as long as possible.
That means adjusting your attitude from one of mourning to one of celebrating the patient’s life yet to live. Don’t let them slide away into depression or isolation. Stay involved.
w Allow them to retain autonomy over as much of their daily life as possible. They have not suddenly resorted to being a child in need of tending.
w They may find it hard to ask for help when they need it. Be ready to offer assistance if you see them struggling, but accept it gracefully if your offer of help is rejected.
w The patient will have good days and bad days. What they don’t need is someone constantly probing. If you ask, “how are you?” And they reply, “Fine.” The worst thing you can do is challenge them with the fact that they don’t seem fine. “Fine” means they are coping the best they can on that given day. They will most likely report any major change, good or bad, on their own without prompting.
w Sympathize with them. That does not mean offering pity. It means expressing compassion. Acknowledge that what they are going through is difficult and you understand their frustration. When they articulate their fear and anger, instead of minimizing it, or telling them to suck it up, gently validate what they are feeling. Encourage them, but don’t pretend that all they have to do is try harder and they will be perfectly well again. Don’t offer “miracle” cures for other diseases you heard about on the Internet.
w Find ways to lighten their load, but also look for creative ways to keep them involved in the household responsibilities.
w You may go through the same grief cycle. Grief is an individual process. There is no specific time line or right way to grieve. An individual may go through the cycle several times as his physical condition changes.
Denial and Isolation: The diagnosis cannot be true. This stage can last a long time as the patient goes through the differential diagnosis phase and if the patient is bounced from specialist to specialist. Denial can be useful at first. It can push the patient to make certain they have not been misdiagnosed or encourage them to keep seeking the correct diagnosis or fight for the right treatment. Understanding what stiff-person syndrome is, and isn’t, can help you make an informed opinion. However, refusing to seek care or reluctance take the appropriate medications can cause complications later.
The immediate concern will be how much stiff-person syndrome will interfere with their ability to work, function, perform activities of daily living (walking, eating, dressing), provide for their families, etc. Chances are, the patient has been dealing with a level of disability for months or years before they were given the diagnosis. The first thing to consider is that this status is not likely to change quickly. There should be no immediate worsening and with the right treatment, they could expect the symptoms to level off or even improve. The exception would be the stiff-person with PNS or PERM variants.
Anger: This phase is the most rife with conflict for patients and their loved ones or caregivers. The symptoms fluctuate. The patient’s capacity fluctuates. Their roles are changing and they don’t know how to redefine. Caregivers may have to take on new tasks as the patient’s ability to complete them is reduced. Roles shift. Financial worries kick in. It is important to hold onto to each other tighter and not lose each other in this process. Troubled relationships can become more troubled. Professional assistance may be required to help navigate and renegotiate the family dynamics and deal with the upheaval.
Do not hesitate to ask your loved one’s doctor to explain to you the details of their illness. Arrange a special appointment or ask that s/he telephone you at the end of the day. Understand the options available. Knowledge is power.
Bargaining: This is the “if only” phase. If I do this, then it won’t be true. If I get a third opinion. If only I pray hard enough, make amends, atone, this burden shall be lifted. This is similar to denial. It may be a time when the patient is willing to try almost anything and this can be dangerous.
Despair: This is the part of the patient narrative when all seems lost. They must come to terms with the new limitations and with the realization that the disease is incurable. Worries set in: financial, emotional, a fear of abandonment. Worry that their spouse will not care the same for an ill partner. Worry that our other loved ones and friends will leave them behind. Reassurance is needed most during this phase of grief. They need to know that they are still the same person they were before. They just have new physical limitations and that those can be handled. They need to be allowed to cry and let it out, but keep watch for a patient who gets stuck in this phase. The medications they take may add to depression. Some carry suicidal ideation as a side effect. It is important that the patient have the full support of those around them during this phase. It may very well require professional intervention. This is a time when loved ones and caregivers feel the most lost as to how to help. It is important to try and keep them engaged in their life, their friends, their interests, and/or their work.
Acceptance: They will hopefully move onto acceptance: the serenity to accept the limitations they cannot change and the courage to do the things they still can. They can reach out to others with the same condition either through individual therapy or spirituality, local support groups, even virtual support groups. They can seek to optimize what they can do within the new limitations. Life will go on. You can still find joy in the small things and the people you love. By learning all you can, you can become an empowered advocate and work with their healthcare providers to make sure they are getting the best care possible.
Spouses, children, relatives, and friends are recruited to help a person who has become physically housebound or bedridden. The stress can escalate as the person's condition worsens.
Signs of burnout include:
w Withdrawal from friends, family, and other loved ones.
w Loss of interest in activities previously enjoyed.
w Feeling blue, irritable, hopeless, and helpless.
w Changes in appetite, weight, or both.
w Changes in sleep patterns.
w Getting sick more often.
w Feelings of wanting to hurt yourself or the person you are caring for.
w Emotional and physical exhaustion.
A caregiver's inability to cope with the stress can lead to depression. Lack of support from other potential caregivers can make them angry. They can find the care of the person an unrewarding burden. They might suffer from substance abuse or psychological issues. None of this excuses abuse, but can contribute to it.
Read the Risk of Abuse section.
Abuse by a caregiver is often unintentional. They are pushed beyond their capacity to cope. They may respond with anger, hitting, yelling, or ignoring the person in their care.
Their interactions can be influenced by the level of the person's disability and the level of isolation and support. If the person being cared for has been abusive in the past, has a tendency toward verbal or physical aggression, or has a history of domestic dysfunction or violence in the home prior to the onset, the situation is at higher risk for caregiver abuse.
Educating everyone on how to recognize abusive behavior and asking for the right assistance is crucial.
Victims don't report the abuse they face for fear of retaliation from the abuser or fearing they will have no one to care for them if they turn them in. If the caregiver is their child, they may be too ashamed or blame themselves for their abuser’s behavior. They may reject help or be incapable of realizing they need it.
If, as a concerned bystander, you suspect abuse, report it. Don't assume someone else will take care of it. You don't need hard evidence.
Call and visit as often as you can. Offer to stay with them so the caregiver can have a break, on a regular basis, if possible. If you know the name of their doctor, you can share your concerns. HIPAA laws prevent them from discussing the patient's details with you (unless they have given them written permission to speak with you), but you can call them or write a letter expressing concerns.
Caregivers need care too.
w Don't neglect your own health: get enough rest, nutrition, exercise, and leisure time.
w Seek medical care for yourself when you need it.
w Seek counseling for depression and frustration.
w Find a support group.
w Find an adult daycare program.
w Consider residential care for your loved one if you cannot cope any longer.
If the person's ability to take care of him/herself safely is compromised, you may need to consider legal guardianship or legal conservatorship. If there are no appropriate family members, a guardian can be appointed by the court.
COPING WITH CAREGIVING