We are pleased to announce that “The Road Back”, the official newsletter of the Stroke Association of Southern California is now available online. Please click on the edition you wish to read, i.e. Spring 2003 and Fall 2003. All future editions of our newsletter will be available on this website shortly after publication.
If you would like to receive our semi annual newsletter please call Judy Bauman at (310) 575-1699 to be placed on our mailing list. To submit articles for the Road Back newsletter, contact Sue Bradley.
These are PDF Files:
Spring 2003
Fall 2003
Winter 2004
Spring 2004
Autumn 2004
Spring
2005
August 2005
The sample articles included in this section are excerpts from previous newsletters.
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Articles:
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| Strokes In Children | |
| Nutrient and Drug Interactions: .... | |
| Strokes Only Happen to the Elderly.... |
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| Know the Symptoms! |
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Winter 2000 Issue
"We believe Courtney has had a massive stroke," the doctor calmly said. Certainly I had misunderstood her. Only old people had strokes. Granted, Courtney wasn’t your normal 6 year old. At the age of 3 1/2 she was diagnosed with an inoperable brain tumor. Her prognosis was grim and she underwent six weeks of radiation (which we later learned caused the stroke), but had no symptoms up to this point. And then I got the call that every parent fears . . .
Her teacher was on the phone saying that Courtney was being taken to the emergency room, for a possible seizure. I now know she had a lot of the classic symptoms (glassy eyes, no speech, right side of her face looked like it had melted, no swallowing). She was transferred to our HMO hospital, where they immediately took an MRI looking for tumor growth. When they didn’t see any tumor growth, they told us the good news, that it was only a seizure, and she should likely recover in the next 24 hours.
After 48 hours, when Courtney had not regained her ability to talk, swallow, or move her right side, they re-examined the scans and discovered the stroke. The damage was massive. It’s amazing they missed it initially, but I think that they were only focusing on the tumor. We were now given little hope for much recovery.
Almost all of the care and rehabilitation was designed around modifying adult practices. In the ICU, the doctor called for a leg pressure monitor to be placed on Courtney’s legs to reduce the chance of another stroke. It was adult size (of course!) and came up to the top of the thigh. Because it was so large, they couldn’t get the right readings so the alarm would go off every few minutes. After 24 hours of this, I insisted that it be stopped — because it obviously wasn’t working.
Within a week, she was transferred to their long term rehabilitation unit — where they admitted they rarely got children. There were only adult-size wheelchairs, bathrooms, and equipment. It took two days to finally come up with one toy ( a jigsaw puzzle) as an activity. A lot of the physical therapy equipment was either inappropriate for her age, or would not adjust low enough for her size. And I doubt that most of the therapists had pediatric experience. I can remember one of the therapists trying to put her on a treadmill, and another thinking they could leave for five minutes and expect Courtney to keep doing the exercises. Looking back — I should have insisted that she be transferred elsewhere. Instead, I learned all that I could, insisted that she be sent home, and made daily or twice daily trips (55 miles round-trip) for therapy.
Courtney worked really hard, and by the end of the summer, she could swallow, talk (somewhat) and had recovered most of the use of her right hand. She was able to return to school (albeit a new school were she could get on-site therapy). Fortunately for Courtney, her new teacher had just gone through a stroke with her mother, so she understood a lot of what Courtney was going through. Since then I have had to do a lot of educating of her other teachers, because they mistook Courtney’s lingering stroke effects for laziness or being obstinate. They would ask Courtney "What color is this?" and she wouldn’t be able to answer. However, if you asked her to give you the green one, she would. What her teachers saw as laziness, was simply a common "word-finding" problem for stroke survivors. Also, in the cafeteria they would comment on how she would "play" with her food in her mouth — but again it was just swallowing problems — a remnant of her stroke.
Courtney’s clinical diagnosis is "moya moya syndrome," which is simply a blockage of blood flow into the brain. For most moya moya patients, the cause is unknown, but with Courtney we know that it was caused by the radiation for her brain tumor. We were told that she would likely continue to have strokes until her body gave out. Through the Stroke Association (and their Festival and Health Fair), we were put in contact with doctors at UCLA. We had already seen two doctors at our HMO who said nothing could be done. They refused to give us a referral even for an evaluation, so we decided to spend our own money on one.
We found that there were indeed surgical possibilities. Once I told our HMO what I wanted to have done at UCLA, they said that they could perform the surgeries themselves. With much hesitation (and a lot of research on the HMO doctor), Courtney had two successful surgeries where they essentially transplanted blood vessels from her scalp into her brain. While it is unlikely that she will ever re-gain more of her functioning, she now has better blood flow, and most importantly a good long term prognosis. I shudder to think about what could have happened if we hadn’t contacted the Stroke Association and gone to the Health Fair to discover our options. We look forward to a long life with Courtney.
If you have a child who has suffered a stroke, please contact the Stroke Association office at (310) 575-1699 and we will try to network you with other families in a similar situation. You might also check out the Web site for the Pediatric Stroke Network at http://sites.netscape.net/pedstrokenet/index.html
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Spring 2000 Issue
The Basics:
As a patient, you play an important role in your medication therapy. You can maximize the benefits of your medications by knowing the best way to take your medicine and following the advice of your physician and pharmacist. Never hesitate to ask questions concerning your medications. Always ask the following questions when a new medication has been prescribed:
What are Nutrient-Drug Interactions?
A nutrient-drug interaction exists when a food changes the effectiveness of a drug by altering its absorption, elimination or blood levels in the body. Additionally, a drug may impart a sensitivity to a certain food type or to alcohol which could result in an adverse reaction; such combinations should be avoided. The examples below illustrate only some well known interactions, there are many more. Always remember to ask your pharmacist about potential interactions.
Examples of nutrient-drug interactions: YOU MAY SEE THE FOLLOWING WARNING LABELS ON MEDICATION BOTTLES (IN CAPS).
TAKE WITH FOOD:
Some medications should be taken with food, either for maximal effect or to help protect the stomach from irritating properties of the drug. Example: Non-steroidal anti-inflammatory meds such as Motrin or Advil (ibuprofen) should be taken with food to prevent stomach ulcers.
TAKE 2 HOURS BEFORE OR AFTER MEALS, AVOID CALCIUM CONTAINING PRODUCTS:
Certain nutrients found in food and/or antacids have a propensity to bind up certain medications in the stomach, decreasing the absorption of the drug from the stomach into your bloodstream. Example: Antibiotics such as tetracycline, ciprofloxacin, and others should not be taken within 2 hours of calcium or iron containing foods, drinks, antacids or vitamins.
Minerals and salts (namely potassium and sodium) can affect how diuretics, often prescribed for controlling high blood pressure, work. Diuretics affect potassium and sodium loss from the body. Potassium supplements or high potassium foods may be needed to replenish lost potassium. With "potassium-sparing" diuretics, extra potassium should be avoided. Diets high in salt may cause an increase in blood pressure and work against the diuretic.
Examples of diuretics that may require a high-potassium diet or supplement: Hydrochlorothiazide (Diuril) and Furosemide (Lasix).
When grapefruit juice is digested, a substance is produced that can interfere with the metabolism of certain medications. This may or may not cause a significant reaction depending on the type of medication.
AVOID ALCOHOL:
Alcohol can worsen side-effects or cause the body to have problems metabolizing certain drugs, resulting in an adverse reaction.
Patients taking medications called MAO inhibitors, a class of drugs used to treat depression, need to be extremely careful about their diet. MAO inhibitors prevent the body from breaking down a substance called tyramine, found in certain foods such as aged cheeses, pickled foods and red wine. This reaction can cause extremely high blood pressure and is very dangerous.
Some medications, namely those used to lower blood sugar or to aid in stomach motility (digestion) achieve maximal benefit when taken at a specified time relative to a meal, usually 30 minutes before meal time.
People who take the blood thinner, Coumadin, should avoid drastic alterations in their intake of foods high in vitamin K.
People who take lithium should avoid drastic increases or decreases in the amount of salt in their diet. Sodium and lithium achieve a balance in the blood stream. Changes in salt intake will lead to increases or decreases in blood lithium levels, which could cause toxicity or loss of therapeutic benefit.
The above are only a few illustrations of the most common or severe in a long list of potential nutrient-drug interactions. Don’t hesitate to contact your physician or pharmacist if you have any questions concerning potential interactions with your medications.
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Fall 1999 Issue
I couldn’t believe that a beer could be so strong. My lips felt numb, as if someone had stuck me with Novocain. A strange feeling, but nothing to be concerned about; after all I had just turned 39 a month before and was out for a drink with some friends at a local pub. I woke the next morning with a blinding headache, but I tried to muddle through my typical Saturday chores. As the day progressed, my headache got worse. Something inside me set off an alarm. I began to worry that I felt so horrible, especially when I noticed that my speech was strangely slurred. I had no idea that any of these symptoms indicated a stroke; neither did most of the doctors I would encounter in my search for answers that night.
Finally, I described my symptoms to the doctor on call at my hospital. He asked if I had been having any stress or had been talking about anything emotional the night before at the pub. He concluded that I might be having a panic attack and suggested that I rest for a few hours. I tried to rest but knew something was terribly wrong, so I called several friends and got a multitude of suggestions ranging from "take some aspirin" to "call 911 right away." Luckily, one friend insisted on coming over right away, which may have saved my life. When she arrived and I couldn’t open the door to let her into my house, I realized that my left side was paralyzed. When I collapsed on the front steps, my friend called 911.
Granted, it’s difficult to properly diagnose anyone over the phone, let alone a 39 year old in good health with no family history of stroke. Teams of doctors were baffled by my symptoms. Still, I can’t help but wonder . . . if I were a man, would I have been told to just relax and try to "avoid emotional thoughts"? All tests showed that I had indeed had a stroke, but no one seemed to know why. One ER doctor even went as far as to tell my mother he thought I must be faking not being able to move my left toes.
Finally, my best friend from high school, Dr. Corinne Laurance, suggested testing me for "antiphospholipid syndrome" (a somewhat rare blood disorder which causes blood clots that she remembered studying about in med school). Sure enough, that was the culprit, not "emotional stress."
If there’s anything I could pass on to others from my experience, it would be that strokes do happen to "younger" patients, and their symptoms should be taken seriously and not just passed off as "stress or anxiety." Fortunately, I was blessed, thanks to the love and support of my family, friends, co-workers, and ex-husband, and the prayers of my international students (hey, prayers in all those languages and religions had to help!). These blessings and the excellent care of the doctors and rehab staff helped me to miraculously emerge from the hospital five weeks later with complete recovery. Four years later, I feel virtually no effects from the stroke except an occasional memory lapse and trouble with organization. I’m back at the gym three times a week and grateful to be teaching the same number of classes as before. My life might be back to what it was before, but I will never again take my youth or my health for granted!
Andrea Spector teaches English as a Second Language and Citizenship classes to international students at Santa Monica College and Santa Monica/Malibu Adult Education Center.
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Fall 1999 Issue
Festival 99’ marked the third year of my involvement with the
Stroke Association of Southern California. But this year was different.
I had a personal experience which affected my life. Previously,
I was one of the 90% of people who couldn’t identify even one
symptom of a stroke.
This year, I arranged for Susan Blatt, the Stroke Association Executive Director, to lecture at various networking and community events. My goal was to increase awareness of stroke prevention and the presence of the Stroke Association and also to generate interest for participation with Festival ’99. After hearing Susan lecture a number of times, I picked out my favorite tidbits of information.
One example Susan used was numbness in the arm and on one side of your body. She explained that numbness could be a symptom of a TIA (transient ischemic attack) or a stroke. Most people, she said, do not take this seriously and may attribute the numbness to possibly sleeping on their arm. Honestly, I thought this was ridiculous because how many people would go to the ER to inquire about arm numbness?
Several weeks later, I was shopping with my wife when I felt a sudden numbness in my arm. It was very short lasting. I joked with my wife that my stroke had come. But once the numbness subsided, my life went on just the same. I’m 26 years old, I’m too young for anything to go wrong.
Those words and that attitude would prove me very wrong. One month later, I was interviewing a potential employee when the scariest episode of my life occurred. In mid-sentence, out of nowhere, my ability to speak was severely impaired. My mouth was moving and words were coming out, but it was not what my brain was telling it to say. I knew something was wrong. I panicked and tried to abruptly end the interview. Saying "Thank you for your time and I’ll get back to you" was a laborious task and a battle of will. Also, during this time, the light became so bright that it hurt my eyes.
Within seconds, I was in my car and heading directly to the emergency room. In retrospect, I was right and wrong. It was good that I knew to go to the ER immediately. I was thinking that if it was a stroke, maybe t-PA (a clot-dissolving drug) could prevent possible brain damage. However, where I went wrong was driving myself to the hospital instead of calling 911.
The decision became apparently more stupid as I began to experience numbness. The numbness occurred only on the right side of my body. It spread throughout my hand, arm, face and mouth. My cheeks felt as though I had just received a shot of Novocain. The local ER was less than five minutes away. I was sweating because I was scared stiff; I was having a stroke and was terrified that I would become disabled. While driving, I prayed for the numbness to end.
After several minutes, the numbness stopped and the headache began. Susan’s lecture reminded me of how stroke survivors sometimes describe these headaches as "the worst headache of a lifetime." I was hoping my headache would not progress to this level, especially because I was driving and didn’t want to get in an accident.
I arrived at the ER and was fortunate to be taken to a room right away. I explained that I was having a TIA. The ER was very busy, but I wanted treatment right away! I knew (again from the lectures) that if t-PA was necessary, it needed to be administered within three hours. I thought the ER should be taking my condition more seriously and with greater urgency. After all, they should be giving me tests to see if I had suffered a stroke! However, the doctor did not feel this was as severe as I thought. Eventually, all tests were done and showed normal results.
Finally, my doctors spoke to me and agreed my diagnosis was a migraine headache. Their rationale was that all tests were normal and I was "too young to experience a stroke."
Now I was angry! How could they dismiss this incredible episode as a migraine? I barked back with, "Do you know that 1/3 of all strokes occur in people under 65?" (another Susan tidbit). When you experience this type of life-threatening/life-altering episode, you want answers and solutions to make sense. I was advised to follow-up with my internist, which I certainly was going to do.
From the beginning, my cardiologist, neurologist and internist were uncomfortable with the diagnosis of migraine. They felt this incident was more serious than the ER doctors believed. I went through further testing and discovered a congenital heart defect. The presence of this congenital heart defect contributed to my TIA but was not the cause. My doctors ordered lots of blood work to try and find any clotting problems. Nothing was found, so they attributed the TIA to a random blood clot. As it stands, I am currently receiving medication to thin my blood and prevent clots that cause strokes.
Looking back on this ordeal, I have a lot to comment on. First,
stroke awareness and education of the public is desperately needed.
I was lucky, but how many others would have taken this episode
as seriously as I did? Second, healthcare professionals, especially
ER doctors, should not trivialize a patient’s reported symptoms.
Had I accepted migraine as my diagnosis, I could have been an
unsuspecting victim of problems to come. Third, invest your time
in finding the best internist you can who will coordinate your
care and advocate for your treatment. Without my internist, these
last few months would have been an absolute nightmare. Fourth,
listen to your body. Nobody knows you like you. Little things
could be a warning sign of bigger problems. Address any changes
immediately. Fifth, don’t pretend that problems only occur with
old age and that being young means you are invincible. The minor
problems of today could lead to the major problems of tomorrow
if they are not given proper medical attention.
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