IPPSO NEWS MAGAZINE
Vol 2 No. 19 July 2009 Editors: Mike and Yvonne Isaacson
It is ability that counts - not disability
The views of those who contribute to this publication are not necessarily in agreement with those held either by IPPSO or by the editors of this publication.
From the Editors Desk
William Shakespeare wrote a Play entitled "Macbeth" in which the main character, whose name is (surprise surprise) Macbeth. He offers Duncan, King of Scotland, a bed for the night in his Castle, and then murders him whilst he is asleep. When he realizes the enormity of what he has done, Macbeth cannot ever get to sleep at all.
Lizzie Borden is another who murdered. Remember the poem about her?
Lizzie Borden took an axe,
Gave her father forty whacks.
When she saw what she had done,
She gave her mother forty-one.
.....after which it is a pretty safe bet that she also didn't sleep a wink either - after two murders.
I also have a lot of trouble getting to sleep at night, but I haven't murdered anyone recently! Or ever! I have it on good authority that my inability to sleep is tied up with having PPS. The only way in which I can get some 'shut-eye' is to take a sedative and even then, all I get is about four hours. Yvonne, who also has PPS, doesn't have to take a sleeping pill, but she also doesn't sleep too well. She is a very light sleeper and is often awake for short periods all through the night, usually for a bathroom call.
We are all supposed to sleep for a third of our lives - that's 33% of our lifetime. (Yes, I know that 33% times 3 equals only 99% but you can have 1% off for good behavior!) There are a lot of sleep disorders, insomnia, sleep apnea, parasomnia, hypersomnia, sleep paralysis, snoring, and there are a lot of ways of overcoming them, like BiPap and CPap machines, sleep studies, pills and etc.
..... and whilst we are about it, what about sleep deprivation in old age? Those who haven't had polio or PPS I mean. When does old age begin? How old does one have to be before one is old?
Come along with me and let's find out more about sleep...........
How Sleep Works - a Rough Guide
Ummm........ under normal circumstances, that is!!!!!
Sleep is one of those funny things about being a human
being -- you just have to do it. Have you ever wondered why? And what about the
crazy dreams, like the one where a bad person is chasing you and you can't
run or yell. Does that make any sense?
If you have ever wondered about why people have to sleep or what causes dreams, then read on and you'll find out all about sleep and what it does for you.
Characteristics of Sleep
We all know how sleep looks - when we see someone sleeping, we recognize the following characteristics:
In addition to these outward signs, the heart slows down and the brain does some pretty funky things.
In other words, a sleeping person is unconscious to most things happening in the environment. The biggest difference between someone who is asleep and someone who has fainted or gone into a coma is the fact that a sleeping person can be aroused if the stimulus is strong enough. If you shake the person, yell loudly or flash a bright light, a sleeping person will wake up.
For any animal living in the wild, it just doesn't seem very smart to design in a mandatory eight-hour period of near-total unconsciousness every day. Yet that is exactly what evolution has done. So there must be a pretty good reason for it!
Reptiles, birds and mammals all sleep. That is, they become unconscious to their surroundings for periods of time. Some fish and amphibians reduce their awareness but do not ever become unconscious like the higher vertebrates do. Insects do not appear to sleep, although they may become inactive in daylight or darkness.
By studying brainwaves, it is known that reptiles do not dream. Birds dream a little. Mammals all dream during sleep.
Different animals sleep in different ways. Some animals, like humans, prefer to sleep in one long session. Other animals (dogs, for example) like to sleep in many short bursts. Some sleep at night, while others sleep during the day.
drink and drive. You might hit a bump and spill your drink.
From Tulaj - Author – unknown
Just up the road from my home is a field, with two horses in it. From a distance, each horse looks like any other horse. But if you stop your car, or are walking by, you will notice something quite amazing....
Looking into the eyes of one horse will disclose that he is blind. His owner has chosen not to have him put down, but has made a good home for him.
This alone is amazing.
If you stand nearby and listen, you will hear the sound of a bell. Looking around for the source of the sound, you will see that it comes from the smaller horse in the field.
Attached to the horse's halter is a small bell. It lets the blind friend know where the other horse is, so he can follow.
As you stand and watch these two friends, you'll see that the horse with the bell is always checking on the blind horse, and that the blind horse will listen for the bell and then slowly walk to where the other horse is, trusting that he will not be led astray.
When the horse with the bell returns to the shelter of the barn each evening, it stops occasionally and looks back, making sure that the blind friend isn't too far behind to hear the bell.
Like the owners of these two
horses, God does not throw us away just because we are not perfect or because
we have problems or challenges. He watches over us and even brings others into
our lives to help us when we are in need.
Sometimes we are the blind horse being guided by the little ringing bell of those who God places in our lives. Other times we are the guide horse, helping others to find their way....
Good friends are like that ... you may not always see them, but you know they are always there.
Please listen for my bell and I'll listen for yours. And remember...
be kinder than necessary - everyone you meet is fighting some kind of battle.
Live simply, Love generously, care deeply, Speak kindly....
Leave the rest to God
How Sleep Patterns Change Over Lifetime
Along with genetics and circadian rhythms, one important factor that helps determine the amount of sleep a person needs nightly is stage of life.
Newborns sleep an average of 16 to 18 hours a day. By the age of one, children usually sleep 13 to 14 hours with that number decreasing until they reach adolescence.
Teenagers generally require at least eight and a half hours of sleep a day. Some researchers go so far as to say that teens need more than nine and a half hours each day. With the pressures of academics, athletics, dating, etc., few teens are getting enough sleep these days. Also, teens’ internal biological clocks tend to keep them awake later in the evening and let them sleep later in the morning than adults. Some high schools have found that ringing the first bell an hour or so later has helped the performance of students.
Most adults need around eight hours of sleep to function well. Although many people claim they require less, only 10% require significantly more or less sleep.
For adult women, pregnancy and menopause can cause significant changes in sleep patterns. In the first three months of pregnancy, mothers-to-be often require significantly more sleep than usual. Scientists are just beginning to research how menopause effects sleep. They have found that menopause tends to cause a decline in the quality of sleep and can lead to insomnia, snoring and sleep apnea. These changes may be due to changes in hormonal function and the psychological factors associated with menopause or may be caused by the aging process and weight gain associated with menopause.
Contrary to the popular belief, the need for sleep does not decline with old age. While the elderly do find that their slumber becomes more fitful, they continue to need about the same amount of sleep that they needed in early adulthood. For this reason, older people tend to nap often during the day. Experts say that the number of nocturnal awakenings can start to increase as early as the age of 40.
Taking a Sleep Study
Here is a personal tour for you to de-mystify a sleep study. It isn't an exhaustive treatise on sleep study, but it might give you an idea of what a sleep study is all about.
A Sleep Study or Polysomnogram (PSG) is a multiple-component test, which electronically transmits and records specific physical activities while you sleep. The recordings become data, which will be "read" or analyzed by a qualified physician to determine whether or not you have a sleep disorder.
It's the night of your sleep study. Hopefully, you have followed the
directions given to you by the sleep center regarding meals, medication and
other issues, so that they don't interfere with the sleep study results. For
example, alcohol or caffeine can interfere with your sleep and should be
Pack a small bag with your pajamas, toothbrush and any other items you will need the next morning. Many patients like to bring their own pillow for better sleep. You may need medication for your PPS before going to the sleep clinic. Talk to them about this so that they know beforehand what drugs you have inside of you.
You will be escorted to your private bedroom. Along the way, you are likely to see the central monitoring area, where the technicians monitor as many as six sleeping patients. It is done by means of computers, video, and print-outs of your recorded activity. The technicians will be able to react quickly if you need help or have a question while in your room.
Right.... you have arrived at your private bedroom. It may resemble a hospital room, a hotel room, or your bedroom at home. You will be asked to slip into your pajamas before the process of hooking up the surface electrodes (leads) begins. The hook-up process may take place in your bedroom or an outer work area. Once you are hooked up and the preparation is over, you may have some time to relax before dropping off to sleep. Most clinics allow the patient to choose their bedtime, within reason. Televisions may be provided, but if you prefer to bring a book or magazine, that's okay. Also, the technician can adjust your bedroom's temperature to suit your personal preference.
Setup can take 30-45 minutes or more in order to get everything connected properly. There are a large number of supplies that are used in the process. Two belts are placed around your chest and abdomen to measure your respiratory efforts, and the band-aid like oximeter probe on your finger measures the amount of oxygen in your blood. The electrodes are temporarily "glued" to your skin and scalp. Don't worry, the glue comes off easily the next morning! The setting up may also include additional items including: paper tissues, electrode wires, marking pencils, tape measure, gauze pads, hair clips, cotton swabs, alcohol pads, safety razor, glue bottles and a needle-less syringe containing the liquid adhesive that will help secure the electrodes
A key part of a sleep study is understanding what is happening while you sleep. By attaching the electrodes to your body, the recorded electrical signals generated by your brain and muscle activity are sent back through the wires and recorded digitally and on continuous strips of paper. The pattern of this activity can be recognized by a sleep specialist who "reads" or interprets the study. These valuable clues reveal whether or not you have a sleep disorder, and if present, how severe it is.
a man a fish and he will eat for a day. Teach him how to fish, and he will sit
in a boat and drink beer all day.
Abnormal Movements in Sleep as a PPS'er
According to Dr. Bruno, nearly two-thirds of polio survivors report abnormal movements in sleep, with 52% reporting that their sleep is disturbed by these movements. Sleep studies were performed in seven polio survivors to document objectively abnormal movements in sleep. Two patients demonstrated generalized random myoclonus, (involuntary twitching of a muscle... Ed) with brief contractions and even ballistic movements of the arms and legs, slow repeated grasping movements of the hands, slow flexion of the arms, and contraction of the shoulder and pectoral muscles. Two other patients demonstrated periodic movements in sleep with muscle contractions and ballistic movements of the legs, two had periodic movements in sleep plus restless legs syndrome, and one had sleep starts involving only contraction of the arm muscles. Abnormal movements in sleep occurred in Stage II sleep in all patients, in Stage I in some patients, and could significantly disturb sleep architecture even though patients were totally unaware of muscle contractions. Poliovirus-induced damage to the spinal cord and brain is presented as a possible cause of abnormal movements in sleep. The diagnosis of post-polio fatigue, evaluation of abnormal movements in sleep, and management of abnormal movements in sleep using benzodiazepines or dopamimetic agents are described.
It's always darkest before dawn. So if you're going to steal
the neighbor's newspaper, that's the time to do it.
Some Sleep Disorders
Post-polio individuals have a high incidence of sleep disturbances with poor sleep quality and frequent awakenings which may be due to several factors. These factors include primary sleep disorders and muscle twitching.
Primary Sleep Disorders
1 . Obstructive Sleep Apnea (OSA)
OSA results when the upper airway collapses and causes repeated interruptions in airflow (apnea).
Apneas are terminated by arousal from sleep, which may occur many times per night, resulting in
sleep disruption. This may result in either hypersomnia or insomnia. OSA is also a risk factor for
hypertension, myocardial infarction, congestive heart failure and stroke. OSA is suggested by a
history of loud snoring, observed interruptions in breathing and daytime sleepiness. OSA is related
to pharyngeal weakness plus an increase in musculoskeletal deformities such as kyphoscoliosis or a
2. Central Sleep Apnea (CSA)
CSA occurs when the brains reflexes for triggering breathing during sleep are defective. This can
occur due to brain diseases (such as some examples of PPS) or cardiovascular diseases, and may coexist with other breathing problems. Many individuals with CSA have difficulty initially falling
asleep because of frequent central apneas with arousal at the transition from wakefulness to sleep.
In post-polio individuals it may be due to residual dysfunction of the surviving bulbar reticular
neurons. A BiPAP or CPAP machine can be very helpful in treating sleep apnea. To properly treat sleep apnea, the correct CPAP air pressure setting must be determined by titration. Titration is done for each patient - there is no "one size fits all" solution. During a titration study, the patient will sleep all wired up, just like a normal sleep study, but they will also wear a nasal mask which is connected to a CPAP machine. Since the pressurized air can be irritating to a nose that hasn't been used much at night, many sleep labs also connect the CPAP device to a heated humidifier during the titration procedure. This adds moisture to the air after it leaves the CPAP and before it enters the patient's nose, easing the drying effect of the pressurized air.
Hypoventilation results from restriction ascribed to scoliosis or respiratory muscle weakness, or both.
4. Muscle Twitching
Sleep disturbances may also result from random muscle twitching that occurs at night. One third of PPS'ers said that their muscles twitched or jumped at night. Further studies, involving monitoring PPS subjects, documented a number of abnormal movements during sleep. These included restless leg syndrome, periodic movement in sleep and generalized random myoclonus (involving contraction of muscles throughout the body), which disturbed the individual's sleep patterns.
5. Sleep Paralysis
Have you ever woken up and been completely unable to move any part of your body? Been completely and utterly unable even to blink your eyelids? That is Sleep Paralysis. Frightening, isn't it? Individuals who experience sleep paralysis often report concurrent hypnagogic hallucinations. A commonly reported hallucination is the feeling of a presence or entity in the room in which the individual sleeps. At times this presence may seem threatening and evil giving rise to the folklore belief of the "night-mare," the "old hag," and the "incubi" ".
Whether SleepParalysis is an occasional or frequent sleep experience, overcoming the tremendous and overwhelming fear associated with it is difficult to come to terms with. Some of this fear can be appeased by the knowledge, the conviction, that one always wakes up! Breathing in a calm, relaxed fashion and willing movement of small body parts such as the lips and/or toes and fingers usually helps the dreamer to awake. Sometimes a sleep paralysis experiencer can arrange with his/her sleeping partner that in the event the partner hears muffled cries or senses body movements, he/she can awaken the dreamer, thus jolting him/her from the paralytic state. Since repeated occurrences are the norm within a relatively short, nighttime period, changing sleeping positions (for example, from lying on one's back to a belly down or sideways posture) often allows the sleep paralysis experiencer to return to normal REM sleep, to less conscious REM sleep.
Events which may be likely to trigger sleep paralysis are fatigue, anxiety, intensive meditational practices, radical changes in daily routine (vacations, moving, job changes, etc. and abrupt changes in the ambient geomagnetic field.
There are four major types of Insomnia. Difficulty in falling asleep; difficulty in staying asleep; waking up too early, and sleep state misperception. Insomnia is not a sleep disorder though - it is a complaint. Medications, caffeine and herbs can cause insomnia. So can anxiety about falling asleep, but if the anxiety is due to a long history of insomnia, it probably isn't the cause. Physical problems such as pain can be the underlying cause, or it could be mental problems. There are a lot of different techniques that can be employed to alleviate insomnia. Talk to your Doctor.
Narcoleptics, no matter how much they sleep, continue to experience an irresistible need to sleep. People with narcolepsy can fall asleep while at work, talking, and driving a car for example. These "sleep attacks" can last from 30 seconds to more than 30 minutes. They may also experience periods of cataplexy (loss of muscle tone) ranging from a slight buckling at the knees to a complete, "rag doll" limpness throughout the body. Narcolepsy is a chronic disorder affecting the brain where regulation of sleep and wakefulness take place. Narcolepsy can be thought of as an intrusion of dreaming sleep (REM) into the waking state. The prevalence of narcolepsy has been calculated at about 0.03% of the general population. Its onset can occur at any time throughout life, but its peak onset is during the teen years. Narcolepsy has been found to be hereditary along with some environmental factors.
Editor's Note: This is by no means an exhaustive report on sleep disorders. If you experience any trouble in sleeping that is not covered here (and many problems are not even mentioned in this article) speak to your Doctor.
Support bacteria, they're the only culture some people have.
BiPAP and CPAP Machines
Let's talk about sleep apnea to begin with. From the previous article, we have already seen that sleep apnea occurs when the brains reflexes for triggering breathing during sleep are defective. It seems to be rather a "popular" complaint amongst us PPS'ers - that is, if the word "popular" is correct. Roughly speaking, what happens is that we "forget" to breathe whilst we are asleep because our brain has gone peculiar and forgotten what to do to allow us to keep the throat open during the night. Can anything be done to help the brain? The good news is that yes.... a lot can be done.
Treatment for sleep apnea depends on the severity of the problem. Given data on the long-term complications of sleep apnea, it is important for patients to treat the problem as they would any chronic disease. Simply trying to treat snoring will not treat sleep apnea. Because of its association with heart problems and stroke, sleep apnea does not respond to lifestyle measures and should be treated by a doctor, ideally a sleep disorders specialist.
We need to hook ourselves up to a machine that will deliver good quality oxygen whilst we are asleep, and that will help us to keep breathing. We need either a CPAP or a BiPAP machine.
A CPAP Machine (Continuous Positive Airflow Pressure) sometimes referred to as nasal continuous positive airflow pressure (nCPAP).
You will have to get used to wearing a mask whilst you are sleeping and you might resemble the man or woman from Mars, judging by the complexity of the mask - some cover the whole head, others look like the one in the picture on the righ, but that really is a small price to pay for the benefit of a good night's sleep. This is presently the most effective treatments for sleep apnea.
After using CPAP regularly, most patients report:-
Also..... If patients do not experience less sleepiness after a period of time and are still complying with the regimen, then the airflow pressure may not be high enough. Patients may require re-testing, which might well mean a second (or even a third) visit to the sleep laboratory. Many patients report feeling more alert after CPAP treatments even if objective laboratory tests fail to show significant differences in the number of apneas and wake-up periods.
There are other benefits too, such as a reduction in serious heart conditions, lower blood pressure and better heart function, but these are outside the scope of this discussion. But... there are some side-effects in using a CPAP machine and it does take time to get used to the machine. Unfortunately, CPAP devices are often cumbersome, which can lead to patients becoming discouraged and stopping treatment. All patients should be warned that the first few nights of CPAP therapy are unnerving. The device often produces anxiety, primarily because of the mask. Starting out with low pressure to get used to the mask may help. Patients may actually experience less sleep or sleep of a different quality in the beginning of treatment.
Nearly everyone complains about at least one side effect. Almost half of complaints are related to the mask. There are several models of masks and you should try them all to find the best one for you. As long as the mask is comfortable and reduces leakage as much as possible, you'll be more comfortable.
Other common complaints include:
In other words.... if at first you don't succeed - DO NOT GIVE UP!!!
Maybe your sleep therapist will recommend a BiPAP machine. Bilevel Positive Airway Pressure systems may be particularly helpful for patients with coexisting lung disease and those with excessive levels of carbon dioxide. These devices have a sensing feature that helps determine and vary the appropriate pressure depending on whether a person is breathing in or out. Greater pressure is needed on inhalation and less on exhalation. These machines are more expensive than the CPAP though.
Also available are Automatic Titrating (Auto)-CPAP Pressure Devices. These are even more sophisticated systems which automatically customize air pressure for the individual patient. They usually use one of three methods:
So.... somewhere along the line, there is an answer tailor-made for you.
A woman walked up to a little old man rocking in a
chair on his porch. "I couldn't help noticing how happy you look,"
she said. "What's your secret for a long happy life?"
"I smoke three packs of cigarettes a day," he said. "I also drink a case of whiskey a week, eat fatty foods, and never exercise."
"That's amazing," the woman said. "How old are you?'
"Twenty-six," he said.
Polio Survivor Registry
From Gladys Swensrud
The John P. Murtha Neuroscience and Pain Institute, a member of the Conemaugh Health System in Johnstown, Pennsylvania has recently noticed your involvement with Polio survivors. We are a non-profit organization that focuses our attention on the therapy, education, support, and research of chronically ill patients. Our goal is to retrieve information about each Polio survivor to compile a database including demographics, age, symptoms, and other traits common to Polio survivors. The survey only takes 5-10 minutes and all personal information is regarded as confidential. There will only be further contact if the responder deems it acceptable. Each response broadens our Polio survivor registry, which leads to a better understanding of the disease. Please complete and submit the survey and forward to all possible participants and other support groups. Thank you for your time.
Register at... http://www.postpolio.conemaugh.org
Lest We Forget
This little girl got polio years ago, before the vaccine was available. She is lucky, because only her right leg is affected. But look at her left leg and compare it to her right leg. See how polio has deformed her leg and ask yourself if she really is lucky.
Despite all efforts, Polio has not yet been eradicated. One can still contract the disease.
Show this picture to everyone you know and tell them that this could have been their own kid. Then tell them to get their own kids immunized! Maybe they will see why.
Photograph courtesy of World Health Organization.
Salk Institute Reaches Out to the PPS Community
By Gladys Swensrud
On May 4, 2009, local post-polio support
group leaders were invited to the Salk Institute for a unique roundtable
and info sharing session.
The invitation was graciously extended by Salk's Rebecca Newman/Vice President of Development and Communications, Cheryl Dean/Senior Director of Planned Giving, and Susan Trebach/Senior Director of Communications.
Our Salk hosts, already familiar with polio virus basics, were particularly interested in gleaning all they could learn about specific problems we face as survivors living with Post-Polio Syndrome.
The Salk Institute, established by Dr. Jonas Salk nearly 50 years ago, is a research center dedicated to biological studies. Molecular Biology and Genetics, Neurosciences and Plant Biology are their major areas of emphasis.
While aging polio survivors face the sobering reality that there is only miniscule attention being paid by researchers worldwide to PPS health related struggles, there remains hope that ongoing study within a wide spectrum of other motor neuron diseases could, theoretically, spill over to help us find answers.
Ms. Newman mentioned two specific projects (one on Amyotrophic Lateral Sclerosis and the other on Spinal Muscular Atrophy being spearheaded at this time by Dr. Sam Pfaff, which highlighted his continued dedication to finding answers on behalf of those stricken with motor neuron disease. The following quote, taken directly from the Salk Institute website " www.salk.edu " explains Dr. Pfaff's focus. The main objective of Samuel Pfaff, a professor in the Gene Expression Laboratory, is to discover how nerve cells are formed and wire up correctly, focusing on the fetal development of the spinal cord.
Of special interest to him is how motor neurons develop and make connections between the spinal cord and muscles in the body, since these connections are necessary for all body movements. Spinal cord injuries lead to paralysis because motor neuron function is disrupted. Degenerative diseases such as ALS (Lou Gehrig's disease), spinal muscle atrophy and post-polio syndrome result from the loss of motor neurons.
Speaking for polio survivors everywhere, we expressed our appreciation to Dr. Pfaff and his peers for their persistent investigation geared toward finding solutions for all people living with motor neuron disease.
The Salk Institute's representatives were intensely interested in
understanding the present dilemma of polio survivors both locally and nationally.
We offered a plethora of topics ripe for discussion, which initiated more and more in depth conversation about ways in which Salk might interface more closely with the post-polio community. It was clear dialogue going forward presents great opportunity to build a close relationship.
Very funny Scotty, now beam down my clothes.
Police recommend Wasp Spray
I have a friend who is a receptionist in a church in a high risk area who was concerned about someone coming into the office on Monday to rob them when they were counting the collection. She asked the local police department about using pepper spray and they recommended to her that she get a can of "wasp spray" instead. The wasp spray, they told her, can shoot up to twenty feet away and is a lot more accurate, while with the pepper spray they have to get too close to you and could overpower you. The wasp spray temporarily blinds an attacker until they get to the hospital for an antidote. She keeps a can on her desk in the office and it doesn't attract attention from people like a can of pepper spray would. She also keeps one nearby at home for home protection. Thought this was interesting and might be of use.