STROKESURVIVORS INTERNATIONAL

SPECIAL INFORMATION FOR STROKERS AND CAREGIVERS

We have discovered some information through our group list discussions and exchanges that your doctor may omit to tell you. We would like to share this with you here. We hope that having this knowledge will better prepare you for your new role as a Stroke Survivor or Caregiver.

DO NOT try to revive the patient or put anything in his mouth. If you have a
phone at hand call the doctor for further instructions but do not leave the
patient unattended during the seizure.
Note how long the seizure lasts -- most end on their own in 15 to 20 minutes. Call for emergency medical assistance if a seizure lasts longer than 20 minutes. Be aware that loss of bowel or bladder control is common.

Remain calm and speak reassuringly.

Pull the patient in toward your body and ease him down your leg onto the floor.

Remove eyeglasses, if worn, and loosen any tight clothing.

Clear objects from the area to prevent injury.

If you can do so without risking injury to yourself turn the patient onto his side and cushion his head.
Otherwise, tilt the head back by placing one hand on the back of the neck and gently turn the head to one side.
This will keep the airway open and allow secretions to drain from the mouth, rather than be sucked into the lungs.

Clear objects from the area to prevent injury.
If you can do so without risking injury to yourself turn the patient onto his side and cushion his head. Otherwise, tilt the head back by placing one hand on the back of the neck and gently turn the head to one side. This will keep the airway open and allow secretions to drain from the mouth, rather than be sucked into the lungs.

Unresponsiveness to the environment may indicate "petite mal" or "absence" seizure disorder.
Periods of dull blank staring should be reported to the doctor. Keep a record of the duration, frequency, and time of these events to aid in re-evaluation. The Epilepsy Foundation also addresses this condition.

Stroke survivors may experience very intense, often inappropriate, emotions: this can include bouts of laughing or crying for no reason.
Try to divert attention to something else if this occurs. If this seems to cause distress,  leave him or her alone for a while. Often this is appreciated, and it does eventually resolve on its own.
Usually these bouts lessen with time and often eventually cease.

If distraction does not help end lability, or even if no lability is experienced, a Stroker may be suffering from depression, mild to severe. Common symptoms of depression are feelings of worthlessness, hopelessness, inadequacy, despair, frustration, and self-blame. Often, stroke causes a chemical imbalance in the brain which may lead to depression.
Severe depression is an illness, not an attitude. "Snapping out of it" is not a reasonable expectation. Medication may be required to control these symptoms.
Be aware that many Caregivers, with the increased demand on them, experience this as well. Talk to your doctor about your concerns.

Someone who is otherwise unable to speak may be able to
swear if angered or frustrated. This is involuntary and can occur even in a person who previously never used foul language. Again, be patient and this will, in most cases, resolve itself in time.

This is sometimes called thalamic pain, since it is believed to originate as a result of stroke damage to the thalamus, a gland which is situated above the brainstem. The thalamus also affects our feelings of hot and cold. Regardless of the name, the pain is neurological in origin and affects a number of stroke survivors. The pain varies from mild to really severe. It usually does not appear until quite some time (e.g. a year) after the stroke. CP syndrome is not exclusive to stroke survivors.

DOES NECK CRACKING LEAD TO STROKES? Some stroke survivors, apparently fit and healthy - had strokes at relatively young ages, for which no cause could be found. But they could make their necks "crack" when moving their head. As far as we know - no studies have been undertaken into this phenomenom.
Just as a precaution, if you have family members or friends, (especially children), who do this, warn them that this habit should not be continued. 

You are the stroke survivor's  "lifeline to the world." You are also the nearest "target" when he/she is feeling angry and frustrated at what has happened, and the stroke survivor  will lash out at you -- there's just no one else handy.
You MUST make arrangements to have "time out" for yourself. Educate your family and friends about your needs also. Try to be specific. Also, be candid about your financial situation and request assistance, if needed, from those who wish to help but cannot be present.
You are the one facing the obstacles when your "loved one" has a stroke. Sometimes, friends and family members just "disappear."
Your Stroker is the same person "inside". But life is never quite the same. The most "loved" name in our vocabulary is spelled c-a-r-e-g-i-v-e-r. We can never thank you enough.

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We hope you will find this information useful. This is not intended to replace your doctor's advice. It was compiled by Whitegoose from discussions within our group. With special thanks to Kate L. (strokesurvivor), Cheryl (strokesurvivor),  Gwenda (caregiver), Mary Claire (caregiver).

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