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“Combining Common Meds May Cause Stroke,” By Michael Smith, MD “Breath Savers: A report on two articles about breathing problems of some polio survivors,” Reported by Elinor Young “Polio & Post-Polio Syndrome,” By Sheila Tohn, RN NORTHWEST FUTURES UNLIMITED “When the Pain is Invisible,” By Lisa Copen WEB FINDS “Living With Disability: Being Politically Correct,” By Dave Graham P.O.S. Library Our Offer (for a mailed subscription) Copyright information |
Sharman’s News Spring greetings to all of you! I am sure you are as eager as I am to see a hint of Spring in the air. It has been a long winter with a lot of slick sidewalks and driveways. Walking my little poodles has been a challenge and I am looking forward to some firm and dry ground underfoot. We have some great meetings planned for the upcoming Spring months. On February 26, Lance Morehouse will be our speaker. Lance is Dave Graham’s Co-Director of ACCESS Spokane, and he is also the Coordinator of Spokane County Parent Coalition. He will speak on a variety of topics including the various social programs that are available in this state for people with disabilities. Lance has a personal interest in these issues as he has a teenage son who is disabled. On March 26, Lynn Pimley, RN, from Horizon Hospice is scheduled to describe the services they offer to families dealing with end-of-life issues. Lynn is qualified to present very interesting information on facets of pain management. This will be a light-hearted and friendly discussion and hopefully will answer questions we all have concerning this topic. April 23, Elinor Young will lead a discussion dealing with the coping skills we all need to live and function with post-polio syndrome. Come ready to share ideas that help you deal with the adjustments you have made. On May 28, Jeanann Eckert, Acupuncturist, will be our speaker. Jeanann is a licensed practitioner of Traditional Chinese Medicine and has been in practice since 1985. Jeanann has spoken with us before and has kindly agreed to share her expertise with us again. As you can see, we have great meetings planned. I am looking forward to seeing you at Shriners Hospital, W. 911 5th Avenue, at 6:00 p.m. There is easy access from the free parking garage located under the hospital. If you are able to join us for dinner in the 4th floor cafeteria, please be there by 5:00 p.m. Much love from your friend,, Sharman |
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Combining Common Meds May Cause Stroke
List Includes Antidepressants, Migraine Medicines
By Michael Smith, MD, Senior Medical Editor at WebMD
Jan. 7, 2002 — Doctors already suspected potential problems could arise from combining drugs that affect the brain chemical called serotonin. And now there are reports of severe headache and even stroke from combining some very popular drugs. Researchers at Massachusetts General Hospital in Boston reported on three people who developed a sudden, very severe headache and brain changes after taking two or more drugs that affect serotonin levels. Serotonin is an important chemical messenger found in the brain and throughout the body. Some drugs — such as antidepressants — work by increasing levels of serotonin , while others cause the chemical to rise as a side effect. Increased levels of serotonin in the body are known to cause the blood vessels to narrow. When this narrowing occurs in the brain, it can lead to headaches and even strokes from a lack of oxygen and nutrients. In each of the three people, the researchers were unable to find any cause for their symptoms other than a serotonin overload in the body.
According to the researchers, there is a long list of drugs that can potentially affect serotonin levels in the brain and body. They include:
- Newer antidepressants called “SSRIs” — selective serotonin reuptake inhibitors (examples are Celexa, Paxil, Prozac, and Zoloft)
- Migraine medicines called “triptans” (examples are Amerge, Axert, Imitrex, Maxalt, and Zomig)
- Diet pills
- Amphetamines
- St. John’s Wort — an herbal supplement commonly used to treat depression
- Illicit drugs, including ecstasy (MDMA), cocaine and methamphetamine (speed, crank, ice, crystal)
All three people in this study were taking two or more of the above substances. The researchers also caution about the affect of combining any of these substances with other drugs that can cause narrowing of blood vessels, such as the decongestant pseudoephedrine — found in many over-the-counter cold and allergy remedies. The researchers are not saying that you should absolutely not take two or more of these medications at the same time. But they do suggest discussing with your doctor any potential side effects from taking a combination of the drugs. In addition, if you experience a sudden, unexplained headache, your doctor should consider a combination of these drugs as a potential cause.
_________________
Copyright (c) 2001, WebMD, Inc. All rights reserved. Used by permission.
Downloaded 01/13/02 from http://my.webmd.com/content/article/1689.51830
Breath Savers:
A report on two articles about breathing problems of some polio survivors
Reported by Elinor Young
Breathing is essential to life in more ways than the obvious. Breathing problems have robbed some polio survivors of an enjoyment of life they could otherwise have. Two excellent articles address this issue. They are: “Breathing Problems of Polio Survivors,” by Linda L. Bieniek , Judith R. Fischer, Joan L. Headley, and Edward Anthony Oppenheimer, MD; and “Assistance for Breathing Problems of Polio Survivors,” with Edward A. Oppenheimer, MD, FCCP, Pulmonary Medicine; reported by Mary Clarke Atwood.
At the end of this report we will tell you where to obtain the full text of these articles and how to contact Dr. Oppenheimer who contributed to both. What information and help do they offer?
“
Assistance for Breathing Problems of Polio Survivors” begins by describing briefly how the respiratory system works. The other article, “Breathing Problems of Polio Survivors,” begins by answering the questions, “How did acute poliomyelitis affect breathing? What is bulbar polio? What is spinal polio?” The answers are instructive:
“The poliovirus affected, in many different patterns, the nerve cells in the lower brain (bulbar) and spinal cord that control the muscles of the body. Poliovirus does not damage the lung tissue or the nerves to the airway muscle.
“When the bulbar nerves were destroyed (bulbar polio), the muscles of the throat were weakened. This resulted in choking during eating and a diminished ability to cough.
“When the spinal nerves were affected (spinal polio), muscles of the arms and legs, and trunk muscles needed for breathing and for taking a deep breath for coughing were weakened. Polio survivors may have had some combination of bulbar and spinal polio, so there may be corresponding throat muscle and limb/respiratory muscle weakness. Involvement of the upper part of the spinal cord weakened the key breathing muscles – the diaphragm and chest musculature.”
This article goes on to explain that the key muscle of breathing, the diaphragm, when weakened by polio makes breathing harder when a person is lying down. This and/or scoliosis can cause a person to breathe faster and more shallowly. Scoliosis can also decrease the lung volume and thereby increase the amount of work needed to breathe. “This can lead to underventilation and respiratory failure,” the article warns.
This is not always readily detected, however. “
Assistance for Breathing Problems of Polio Survivors” says:
“Breathing problems can sneak up on polio survivors because they may not be easily identified. Is your answer “Yes” to any of these questions?
- Are you experiencing increased fatigue?
- Do you frequently awaken with a headache?
- Are you having problems sleeping?
- Do you need to use additional pillows when sleeping?
- Do you sleep better in a recliner or chair than in your bed?
- Do you have a poor cough or difficulty clearing secretions?
- Did you ever use assistive breathing devices (such as an iron lung) during or following the acute stage of polio?”
The other article adds to this list the following:
- Claustrophobia and/or feeling that the air in the room is somehow bad
- Anxiety
- Difficulty in speaking for more than a short time
- Quiet speech with fewer words per breath
- Weak cough with increased susceptibility to respiratory infections and pneumonias.”
If you routinely experience any of these, both articles suggest that you obtain a breathing evaluation from a pulmonologist. However, a caution is in order. In answer to the question, “Are all polio survivors at risk for breathing problems?” the article “
Breathing Problems of Polio Survivors” says,
“No. Individuals who used an iron lung, or barely escaped one, during the acute phase should be aware of potential problems. Those survivors who did not need ventilatory assistance during the acute phase, but who had high spinal polio resulting in upper body weakness and/or diaphragm weakness, and those with scoliosis (sometimes referred to as chest wall deformity) may also be at risk.
“Other factors contributing to breathing problems are asthma, COPD, smoking, obesity, and sleep apnea: either central, obstructive, or mixed.”
Both articles explain the kinds of tests currently used for evaluation and the types of equipment available to help one breathe effectively. “
Assistance for Breathing Problems of Polio Survivors” also advises:
“If breathing muscles are weak because of PPS, do not use up your energy on exercising to improve their strength. It is unlikely to help. However, the ability of the lungs to expand should be maintained. Using a chest inflation machine, learning how to take a deeper breath, and glossopharyngeal breathing (GPB) – sometimes called “frog breathing”, can help maintain the ability of the lungs to expand. GPB can augment the volume of air you breathe in; it is an important survival skill to learn if your respiratory muscles are weak.
“Use of a Continuous Positive Airway Pressure (CPAP) machine may also require increased work for the expiratory breathing muscles. The CPAP was developed during the 1980s to keep airways open for people with sleep apnea. During the 1990s cyclical inspiratory pressure was added to this equipment and the Bilevel Positive Airway Pressure (BiPAP) came into use. The BiPAP assists inspiration. … When respiratory muscles are weak due to PPS, a bilevel device would usually be better and safer than CPAP even if a sleep study shows sleep apneas.”
Both articles discuss other ventilation choices and therapies. One important question answered by “Breathing Problems of Polio Survivors” is “How can a polio survivor improve cough?” The answer:
“Retained secretions in people who have impaired coughing ability can turn a common cold into pneumonia. To improve cough, there are two forms of assisted coughing.
“Manually assisted coughing involves another person administering a thrust to the chest and abdomen of the individual with neuromuscular disease immediately after that individual takes a big breath.
“Mechanically assisted coughing can be performed with the CoughAssist by J.H. Emerson Company. The CoughAssist applies positive pressure to provide a deep breath in, then shifts rapidly to negative pressure to create a high flow out, as with a normal cough.”
As to the use of oxygen, both articles quote Tony Oppenheimer, MD, retired physician in pulmonary and critical care medicine:
“Administering oxygen does not provide assistance to the weakening respiratory muscles, but gives both the patient and the doctor the false impression that appropriate treatment is being provided. Underventilation is mistaken for an oxygen transfer problem. Indeed, administering oxygen can mask the problem.
“Also there is a danger of causing respiratory depression by giving oxygen. It will improve the oxygen saturation, but not the underventilation. It may increase the danger of dying of sudden respiratory failure.
“Some situations may require administering oxygen, such as cor pulmonale or pneumonia due to infection or aspiration. If this occurs in people with respiratory muscle weakness and hypoventilation, then it is important to provide both assisted ventilation and supplemental oxygen, and use ABGs to monitor them.”
“
Assistance for Breathing Problems of Polio Survivors” suggests four choices for the polio survivor who is having breathing difficulties:
“1. He can decline assisted ventilation and use only palliative care.
“2. He can use only non-invasive Nasal Positive Pressure Ventilation (NPPV), such as BiPAP.
“3. He can use assisted ventilation only for acute episodes such as pneumonia.
“4. He can use whatever ventilation support is needed for long-term survival, including trach positive pressure ventilation if needed.”
—–—–—–—–—–—–—–—–—–—–—–—–—–—–—–—–—–—–—–—–
These articles may be electronically obtained as follows:
“Assistance for Breathing Problems of Polio Survivors”
is on the World Wide Web at www.skally.net/ppsc/breathe/l.
“
Breathing Problems of Polio Survivors” is at www.gbppa.org/breath/.
Dr. Oppenheimer is now retired from office practice, but he will try to respond to comments and questions emailed to him at Eaopp@UCLA.edu.
Polio & Post-Polio Syndrome
By Sheila Tohn
POLIO
Polio is caused by a filterable virus which attacks the anterior horn cells. Usually only certain random muscles are affected so that one lower leg or one arm might be weak or completely paralyzed.
The muscles which control breathing might also be affected, and there is a form of polio called bulbar which affects breathing, perhaps speech, swallowing difficulties. Bulbar and paralytic polio which affect breathing usually require the use of an iron lung–either the big old giant sized ones or small portable ones.
The actual communicable disease only lasts about three weeks, but the weakness and paralysis can last months, years or the rest of one’s life. Some patients remain on ventilators all their lives. Rehabilitation is usually in the form of physical therapy and reeducation of the muscles and can take years. Many patients end up with no residual paralysis after rehab.
The polio survivor is in many cases a super-achiever, having to prove to others and themselves that they are CURED. They work harder, longer, and many times in high stress jobs. The statistics show that their levels of education are higher than the norm. We do well in our jobs, for the most part, for many years.
POST-POLIO SYNDROME
And then, for many, many of us we get a very very insidious weakening, pain, fatigue, etc. which gets progressively worse. We find that the muscles that were the strong ones we relied on to do most of the work are becoming weaker. Sometimes our “good” limbs become weaker than our “bad” ones ever were. Many of us have to give up our jobs and go back to the braces and wheelchairs that we thought we had given up for good so many years ago. We sometimes develop bulbar problems that we never had with the original disease.
Don’t be surprised if you are angry that this has happened to you. We all thought that we had overcome many years ago, and now we must overcome again.
What I have put down here is just a very rudimentary explanation of polio and post-polio syndrome. Hope this helps you understand.
________________________
Posted to the SJU Polio and Post Polio Syndrome List, (an email list) May, 1995. Printed by permission. © Sheila Tohn.
NORTHWEST FUTURES UNLIMITED
You may be familiar with the therapy that Ed Snapp, P.T., from Futures Unlimited, Inc., Columbus, Mississippi, has developed to treat many central nervous system disorders including post-polio syndrome. Approximately twenty-five members of Polio Outreach of Spokane have been treated by Ed over the last five years and all have made from moderate to profound improvement. Northwest Futures Unlimited is the new branch and facility in Spokane at 1315 N. Division that will open in February. Ed Snapp, P.T., will direct the treatment and Dr. Karen Stanek, M.D., PhD, a well-known physiatrist in Spokane, will be the consultant and coordinator of the rehabilitation services. The new clinic will incorporate the latest changes and advancements made with treatment protocol currently available. Northwest Futures Unlimited will offer unique natural therapeutic methods that help the nervous system heal itself. This rehabilitation and natural healing method has been found most beneficial for post-polio syndrome, cerebral palsy, chronic pain, chronic fatigue, traumatic brain injury, spinal cord injury, fibromyalgia, ADD, ADHD, dyslexia, reading and comprehension failure, Parkinson’s disease, alcoholism, and many other diseases. The human body is programmed by genetic memory. There are patterns and certain environments that allow the body to recover lost functional ability. Northwest Futures Unlimited will provide the patterns and environment to facilitate healing.
If you are interested in speaking with someone who has been treated by Ed Snapp’s methods, contact us at polionet@polionet.org. You may call Ed Snapp to arrange for treatment at 1-662-327-7333 or Dr. Karen Stanek at 1-509-624-0908.
Appreciates grandmother even more:
“I am doing a project on polio for my English class. One of the sites recommended from my teacher was yours. I looked it up, and saw why. Your page was one of the best I’ve ever seen. You see, my Grandmother had polio, and spent her childhood in an iron lung. She survived, contrary to her doctor’s beliefs. After that, she recovered completely, but was scarred spiritually. She would often tell me stories of what it was like back then, during the epidemic, so I always felt like I knew what it was like. My Grandmother recently passed away, but I still remember her and her struggles. Your page helped me to truly understand poliomyelitis. Thank you for helping me to truly appreciate my Grandmother. I will always remember her.”
Dealing with PPS “interesting life”
“I am a polio survivor and now having an interesting life dealing with post polio. I had polio when I was 8 in 1961 and don’t remember much about it. Good thing. Some of the stories are pretty awful and if it is anything like the way I feel now, I’m glad I couldn’t remember. Just want to say thanks for all the information.” B.B., Calgary, Alberta, Canada
Some of us with post-polio syndrome appear to be physically normal. There is no limp or other sign that customarily signals disability, pain or weakness. We sometimes feel not at all understood. This article was not written specifically about PPS, but certainly applies to us.
When the Pain is Invisible
By Lisa Copen
“But you look so good!”
“I can tell you must be feeling better. You look great!”
“I’m so glad you were able to come. Thank goodness you finally are getting some relief.”
To a healthy person, none of these comments seem unusual or insincere. Our friends are simply trying to find the right thing to say. Of course, they really do believe that you must be feeling better or you wouldn’t be out of bed. Those of us who are ill, however, understand that if we stayed in bed until we felt better, we would never leave the bedroom and we would miss out on life. So we get out of bed. We put our energy into finding something to wear that doesn’t clash too badly; something that looks acceptable, despite the wrinkles. We search for the lipstick that we used last week. We dig through the closet looking for something that resembles a shoe. And we go on. We go out.
“But You Look So Good!”
Once we are out and about, people assume that we woke up feeling wonderful, that we jumped out of bed and are without pain. Says Donoghue and Siegel, authors of Sick and Tired of Feeling Sick and Tired, “An added difficulty in adjusting to being handicapped with invisible chronic illness (ICI) is the phenomenon of appearing well.” Connie, a woman who lives with multiple sclerosis, and her friends are already planning their costumes for Halloween next year. They are going to dress up in “a costume” that portrays how they feel, so finally when people see them they might understand how they feel.
Sometimes We Want to Appear Normal
Many chronic illnesses are invisible, causing feelings and frustrations that are different than what a person with a visible condition may experience. “It seems that we all want to appear normal. We all want to give the impression of strength, health and vigor,” shares Camille Lewis, a graduate student at Indiana University who lives with Cushing’s syndrome. “I’ve debated and debated about getting some walking help–a cane or whatever-and the one thing holding me back is my ego. I don’t want to appear to be in pain. I want to be normal, even though I’m not.”
Sometimes We Want People to
Acknowledge the Pain
One would believe that pain would be socially understood and somewhat sympathized with. Although people do sympathize with pain, it is under circumstances that we believe are severely painful, such as childbirth, trauma, late stages of cancer, etc. People cannot relate with the chronically ill since the individual is not screaming, crying or grimacing. We, who live with chronic pain, often walk, talk, and function normally (as far as can be seen) so it is assumed that the pain is overstated.
Migraines, for example, are often misunderstood as being just a bad headache. For those who experience them, their whole world comes to a halt until the pain subsides.
There is a constant struggle to try to have people know what we are going through, without seeming to search for sympathy and pity.
Men who live with illnesses, such as fibromyalgia, may feel self-conscious. Their illness is primarily seen as a women’s disease. They appear to be sluggish and unmotivated when they can’t do physical tasks. Women are being diagnosed with chronic fatigue syndrome in huge numbers and yet the illness is still called “yuppie flu” and treated with anti-depressants. The immense fatigue that one suffers from is rarely recognized or understood by their friends and family around them. A recent Dear Abby column featured a letter written by a woman who’s sister had recently committed suicide following her family’s denial of her chronic fatigue syndrome diagnosis. When the young lady had told her sister about her diagnosis, the sister had responded with “When you have a husband and a family then you’ll know what chronic fatigue syndrome is!”
We want People to Assume it’s Just as
Bad as it is, but No Worse than it Is
Living with an invisible chronic illness can mean constantly trying to redefine your condition. We can’t keep up with the rest of the world, and yet the world sees no excuse for our lack of participation. Some would argue that having an invisible chronic illness could be a blessing, as one has a choice to tell others or remain an assumed normal person. The disadvantage of this is trying to convince others that the disease is legitimate and painful. Many people think “Aren’t you overdoing it… or playing it up a little bit?” People’s observations do not conform to their expectations as to what a sick person should look and act like. Therefore, they are quick to become intolerant and suspect that the symptoms are overstated. It is often not only the disease itself that is painful, but also the emotional effects of having the illness discounted, having one’s respectability and judgment questioned, and dealing with the criticisms of others. It is extremely necessary for the person with chronic illness to feel that his disease is validated, even by people that he doesn’t know. One example of this is “the handicapped parking space confrontation.”
Need to Feel Validated
There are over 40 million people who live with chronic illness in the United States, most of the illnesses invisible. Oftentimes, illnesses make it difficult for the person to walk far and so handicapped placards are issued to them. The placard holders are soon often confronted by accusatory looks, stares, notes left on their windshield and even approached and questioned about their obvious lack of wheelchair. For those who have experienced any one of these situations, it can be a humiliating and frustrating situation. None of us feel as though we should have to justify our illness to anyone, and yet we are so angered by their obvious ignorance and their belief that we are abusing the “privilege” (that we wish we weren’t applicable to receive). Although they are complete strangers, we still have a desire for their understanding and validation.
What to do?
So what do we do with these frustrations and the lack of understanding that we may sometimes feel that other people have? David Biebel, author of If God Is So Good Why Do I Hurt So Bad? writes in his book, “Because God is now here, I am not an only child. I have a friend, closer than a brother, who understands the path I walk because He has walked it too. His heart beats with mine. His heart breaks with mine. His hands reach out, through their own pain, to touch my aching soul and let me know that someday it will all become clear — but for now to keep on walking, like He did and like others have before me” (p.72).
___________________________
Reprinted with permission of Rest Ministries, a Christian organization for people who live with chronic illness or pain at
www.restministries.org or 888-751-7378.
WEB FINDS
Understanding the mechanics of pain may help us manage it. Find an excellent explanation, “How Pain Nerve Cells Act When They Are In Pain”
Understanding is one thing. Living with pain is another. The Mobile, Alabama Area Post-Polio Support Group has posted a very helpful article, “Living With—and Without Pain”
Does Dave’s article on pg.7 “Living With Disability: Being Politically Correct,” interest you? There are some good Disabilities Etiquette links at http://dir.yahoo.com/Society_and_Culture/Disabilities/Etiquette
Would you like to join a PPS social/support/chat or discussion email list? At www.skally.net/ppsc/ppsc-l/ you will find descriptions and subscription info on over 30 PPS lists.
Living With Disability:
Being Politically Correct
By Dave Graham
We are not far removed from an America that once considered a person’s disability to be shameful. I am reminded of the family that kept their disabled sister locked away in the attic when people would come to their home. They felt that her very existence brought embarrassment and disgrace on the whole family. That sort of thing was still happening as late as the 40’s and 50’s, not all that long ago.
That mindset was supported by the fact that homes and whole groups of people were often quarantined when they were found to have a contagious disease.
That attitude began to change as one of our greatest Presidents had to deal with his disability while in office. A few years after Franklin Delano Roosevelt’s 3 ½ terms in office came the polio vaccine. Dr. Jonas Salk, experimenting on his own children, brought an end to that great crippler. The heroism of those and many others changed a society’s mind about the nature of being different, of living with a disability.
Today we respect people of all colors, creeds, and conditions. Our society has created special parking, special shopping carts and even special airline boarding privileges for the disabled. Why then with 17% of our American population needing those advantages do they often go unused? That answer is simple. People do not want to be seen as disabled. They don’t want people to perceive them as malingerers or slackers in a world where it is important to be strong. They want to be treated with respect. So let me make a few suggestions that will help you show them proper respect.
·
If you see a disabled person walking toward a closed door, do you chase ahead to open it for them? Your act of assuming that they need your help may be embarrassing to them. The correct way to handle this situation is to walk up beside them and quietly ask if you can open the door for them. Being correct is
communicating first
.
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When you see a person who looks perfectly normal using a “Disabled Parking” space, does your mind question their motive? Let me suggest that the person may have an invisible disability. If they have the boldness to use such a parking advantage than I believe they need it. Besides, who am I to judge?
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Here is a good rule when considering how politically correct your words are. People are people first, not their disability first. Example: a blind person is incorrect. Properly, they are a person who is blind. Don’t beat yourself up about saying proper words like ‘blind’ or ‘sight impaired.’ Be natural and see the person first, not their disability.
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Little children need to be educated about people with disabilities. If you see your little one staring inappropriately, consider this to be a teachable moment. Take them aside and give them an honest explanation. You may even find that the disabled person is open to helping you. Has your primary school asked a disabled person in to talk to the kids? If not, you might suggest they do.
·
A cane, crutch or other supportive appliance should be treated as if it were a part of the user’s body. If they use it on their right side, then you walk on their left, giving them space. A wheelchair is also a very personal appliance. Do not touch or rest on a person’s chair without asking permission.
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Some disabled people like to impress others about how strong or how seemingly unaffected they are by their disability. This has caused a response from able-bodied people to encourage them, much the way we encourage an athlete. I do not recommend this kind of encouragement because often the disabled person’s desire to succeed ends up doing them physical harm while trying to rise to someone else’s expectation.
Whenever you question yourself about being politically correct in speech or deed, simply remember that disabled people want to be respected for who they are.
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Dave Graham is Co-Director of ACCESS Spokane and does training and speaking on the subjects of disability, the ADA and Post-Polio Syndrome. To contact Dave, e-mail us at polionet@polionet.org.
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