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NO MEETINGS IN JULY AND AUGUST
September 21st, 2008 – Dr. James Scott, neurologist with the Neurology
Associates of Ormond Beach give a presentation of other neurologic
conditions that mimic post-polio.
November 9th, 2008 – Two therapists from Florida Hospital Pt. Orange Rehab
Services David Manestar, Manager and Kristen Hanak, certified
Lymphedema Therapist.
January 18th, 2009 – Dr. MaryAnn Keenan, head of University of PA
Orthopedic Surgery Department, will talk on both surgery and bracing.
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CONTENTS
From Barbara
If You Need to Fly with Oxygen
Options for Treating Spinal Stenosis
Difference between Disks
A Thermometer
6 Myths that Won’t Die
T’s and Z’s of Osteoporosis
Word Puzzle
Was it All a Power Issue
Three Things
Diabetes Mellitus
We’re Still Here and So is Polio
Alaska by Small Boat
How to Dance in the Rain
Answer to Word Puzzle
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FROM BARBARA
I know that you’re getting this newsletter a little later than usual and I apologize – seems I’m slowing down somewhat with the hot weather. Hope everyone had a great Fourth of July.
Have you had swelling in your legs??? Well, I have – in fact, the bottom of my polio leg was also “sweating” and leaving a trace of liquid on the bottom of my brace. After months of trying to take care of it myself, I finally went to a therapist who is trained to treat Lymphedema problems. Kristen will be one of the speakers at our November meeting, along with David Manestar, Manager of the Pt. Orange facility. Both David and Kristen have worked with post-polio people before and are ready and able to help out any who need them. I found them very caring.
In fact, most therapists working with Lymphedema patients recommend com-pression stockings – Kristen, after examining me and seeing the extent to which my polio problems interfered with the edema problem, realized that I didn’t have the dexterity in my hands to pull up the compression stocking. My right hand has what is called a “flat palm” (I cannot stretch out the fingers or grasp items with them) – my left hand, after the carpal tunnel surgery, just doesn’t have the strength to pull it up. Soooo, a solution had to be found – and one was…. A circulating machine was ordered that I use for one hour every night – this machine “compresses” the leg muscles thereby moving the blood flow up and down. I also “tape” my leg up every day to keep it from swelling during the day.
This procedure is one that will now be part of my life. It is not to be done for a month or two or a year or two – it is ongoing. After using the machine and taping my leg for just about two days, the “sweating” has stopped.
Now, for even more exciting news – Dr. MaryAnn Keenan from the University of PA Hospital has agreed to come down in January to give a talk on surgery and bracing. Dr. Keenan has been my post-polio guru, and surgeon since 1995. She has been here before – at our 1996 Conference and again at our 2000 Conference. This time, however, she will be the only speaker. Our meeting will be limited to the first 100 reservations. Although January is still six months away, arrangements have to be made. I would very much appreciate knowing how many will be coming so we know what type of facility we need to hold this meeting. We can’t wait for the November/December newsletter to find out – so, please either e-mail us at: bgold@iag.net or send back the Conference Reservation form by August 1st. You will not need to send any money with this form – it’s just to give us an idea as to how many are interested.
Any questions, don’t hesitate to contact us either by e-mailing your question or calling me at 386-686-2435.
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Reprinted from Polio Echo Newsletter, July/August 2008
If You Need to Fly With Oxygen, Good News is Here!
June 2008
On May 13, the Department of Transportation amended the 1986 Air Carrier Access Act with regard to “nondis-crimination on the basis of disability in air travel.” The final rule, effective May 13, 2009, adds accommodations for travelers who use oxygen and other respiratory assistive devices.
Devices must be tested and meet FAA requirements, and all airlines will be required to allow travelers using ventilators, respirators, CPAP machines and portable oxygen concentrators to be carried on board, stowed or used during flight. Previously, airlines contended that testing oxygen devices to determine electro-magnetic interference, as well as allowing use of such devices during ascent and descent on short flights, was burdensome to attendants and cost-prohibitive.
The new ruling shifts the burden of electromagnetic interference testing to the device manufacturer. Also, passengers using oxygen devices will not be required to have attendant assistance, and they will be able to use their devices during all phases of a flight. For more details, visit: airconsumer.ost.dot.gov/rules.
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Reprinted from Daytona Beach News-Journal, June 23, 2008, To Your Good Health column.
There are several options for treating spinal stenosis…
By Dr. Paul Donohue
Q. I am 78 and have been diagnosed with spinal stenosis. The doctor says I am not ready for an operation, which makes me glad, since I really don’t want one. I take ibuprofen for pain. What would an operation entail, and what kinds of results could be expected? My husband says that the doctor said if I don’t do anything, I will be in a wheelchair later.
A. We need a mental picture of the back and spine. The spinal cord is an extension of the brain. It contains nerve cells and connections to and from the brain. It’s as wide as your little finger and is extremely delicate, so nature protected it by encasing it in the backbones (vertebrae, the spinal column). Visualize the spinal column as a stack of building blocks with a hole drilled through their centers. The hole is the spinal canal, and through it runs the spinal cord.
Spinal stenosis is a narrowing of the hole. Such narrowing puts pressure on the spinal cord and the nerves that emerge from it. Depending on which nerves or which section of cord is compressed, pain results. Most often, the narrowing takes place in the lower back. Bone spurs from arthritic changes, thickened ligaments from aging and the slipping out of place of backbones are some of the things that narrow the spinal canal.
Surgery isn’t the only treatment. Physical therapy, injections of steroids into the canal to suppress inflammation and reduce swelling, anti-inflammatory drugs like your ibuprofen and the application of hot or cold packs to the painful back are a few of the things that can relieve spinal stenosis pain.
When the pain is intolerable, then thoughts turn to surgery. The surgeon enlarges the spinal canal and sometimes unroofs parts of the spinal column to afford the spinal column to afford the spinal cord and its nerves more room. At times, the doctor has to stabilize the backbones by “fusing” them – welding adjacent bones together. You won’t wind up in a wheelchair by delaying surgery. You might never need it.
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Another question in the same column had to do with the difference between disks – so, we’re putting that question in here too.
Q. What is the difference between ruptured, herniated, slipped and bulging disks in the back? Is surgery always recommended?
A. Back disks are cushions sandwiched between adjacent backbones to shield the backbones from the daily stresses they have to endure. They’re circular affairs, with a tough outer ring and a soft inner core. When the outer ring develops a crack or split, as it often does, the inner core protrudes through it. That’s a ruptured, herniated, slipped or bulging disk, whichever term you want to use.
If the bulge presses on a nerve, pain results. Surgery is recommended for pain that doesn’t yield to conservative treatment like physical therapy. It’s also recom-mended when the bulge presses on nerves that control bladder and bowel function.
FECPPSG Editor’s Note:- I know that several of our members have spinal stenosis and I also know that many have disk problems – or may start having disk problems as their arthritic conditions keep pressing on their backbones. Myself, the arthritis I have in the neck area is starting to do a job on my spinal cord.
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This was recently e-mailed to me by one of our members (and a contributor to this issue), Michael Kossove. I thought it worthy of being inserted in our newsletter.
A THERMOMETER
On your way home from work, stop at your pharmacy and go to the ther-mometer section and purchase a rectal thermometer made by Johnson & Johnson.
Be very sure you get this brand. When you get home, lock your doors, draw the curtains and disconnect the phone so you will not be disturbed.
Change into very comfortable clothing and sit in your favorite chair. Open the package and remove the thermometer. Now, carefully place it on a table or a surface so that it will not become chipped or broken.
Now the fun part begins.
Take out the literature from the box and read it carefully. You will notice that in small print there is a statement: 'Every Rectal Thermometer made by Johnson & Johnson is personally tested and then sanitized.'
Now, close your eyes and repeat out loud five times, 'I am so glad I do not work in the thermometer quality control depart-ment at Johnson & Johnson.'
HAVE A NICE DAY AND REMEMBER, THERE IS ALWAYS SOMEONE ELSE WITH A JOB THAT IS MORE OF A PAIN IN THE BUTT THAN YOURS!
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The following is reprinted from USA Weekend, May 2008, EatSmart column
6 Myths that Won’t Die
By Jean Carper
Science now says the following examples of familiar food lore are more myth than fact.
#1. All tea is the same. Bottled and instant teas are very low in antioxidants, reports the U.S. Department of Agriculture. In order to get the disease-fighting amounts of tea’s potent antioxidant, EGCG, you must drink brewed green tea or take an EGCG supplement.
#2. Bagels are health food. Just the opposite. Most bagels are made from processed white flour, are low in fiber and have a high glycemic index, causing them to spike blood sugar and tying them to weight gain and problems such as type 2 diabetes and heart disease. Better bread: whole grain or sourdough.
#3. Raw is more nutritious. In fact, cooking vegetables often releases nutrients, such as beta carotene. And flash-freezing fruits and vegetables quickly after harvest retains nutrients, while shipping and storing fresh produce drains nutrients. Surprisingly, canned tomato sauce and paste have more lycopene, a powerful antioxidant, than fresh tomatoes.
#4. Coffee and caffeine are harmful. Moderate amounts are safe and often beneficial, Harvard research says. Coffee may cut the risk of type 2 diabetes, gallstones, colon cancer, liver damage and Parkinson’s disease; it also may boost cognitive function. But, in some, coffee can increase headaches, anxiety and heart problems, so follow your doctor’s advice.
#5. Use no-fat salad dressing. Without fat, your body can’t absorb needed nutrients in toppings such as tomatoes and carrots. Douse salad with a little extra-virgin olive oil or add cheese, nuts or avocado.
#6. Eggs are dangerous. Studies show that egg yolks do not significantly raise blood cholesterol, and they’re packed with choline, which is vital for brain development.
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Reprinted from Daytona Beach News-Journal’s To Your Good Health column, June 27, 2008.
T’s and Z’s of Osteoporosis
By Dr. Paul Donohue
Q. What is the difference between the T-score and the Z-score on osteoporosis tests?
A. The standard test to screen for osteoporosis is the DEXA (dual-energy X-ray absorptiometry) test. It discloses the strength of bones and how great is their calcium content.
The results of the test are given as T-scores or Z-scores. A T-score compares a patient’s bone strength and calcium content with the bone strength of a healthy young adult. A T-score of .5 or less indicates osteoporosis. A score of -1 to -2.5 is osteopenia – not osteoporosis, but on the way to becoming osteoporosis. Most decisions about treatment are made on the basis of a T-score.
A Z-score is a comparison between a patient’s bone strength and calcium content and the bone strength and calcium content of a person of the same sex and age. A Z-score of less than -2 indicates that a person is not absorbing enough calcium to keep bones healthy. The problem might be overactive parathyroid glands or one of the many malabsorption syndromes that block calcium’s passage across the digestive tract and into the blood. Z-scores provide additional information but do not define osteoporosis. Often, they are not reported.
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Another e-mail goodie.
Word Puzzle
I am only sending this to my smartest members.
I couldn’t figure it out and had to look at the answer.
See if you can
figure out what these words have in common.
1 - Banana
2 - Dresser
3 - Grammar
4 - Potato
5 - Revive
6 - Uneven
7 - Assess
If you haven’t figured it out, look for the answer on last page of this
newsletter.
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The following was sent to us by one of our members in Tennessee, Phyllis Dolisager. Phyllis has done quite a bit of writing and you’ll be seeing more of her works in our newsletter. Thanks, Phyllis for this one – it brought back memories of my first experience with a “Rascal” way back in 1991, also at an Abilities Expo show… that one in New Jersey.
Was It All a Power Issue?
My first experience in a wheelchair almost ended in divorce court. Knowing that I’d never make it on my polio feet for three days at the National Booksellers Convention, I gave in and got a manual wheelchair. My husband Ron, bless his heart, willingly agreed to be my pusher.
Immediately we found an obstacle just getting from our hotel to the Convention Center next door. Fortunately I could get out of the chair as he carried it up and then down five or six steps. We figured out where the elevators were, despaired that there was so much carpeting in the Center, but how were we to know that the thesis of the popular book Men Are from Mars and Women Are from Venus was going to be our main problem?
I had taken seven copies of my latest book proposal with me. Selling one’s self and one’s book idea in three to five sentences is a precise skill. Timing is key. Imagine having made a great presentation, followed by a positive response, handing over the proposal, saying good-bye, but… not moving. And having this happen more than once....
I knew right then and there that I needed my own power. This Type A person had to regain some control over her life. Three days in a manual chair—even with the world’s best husband standing behind me and pushing me—was all it took. Decision time was here. But what was the solution?
Then we attended the Abilities Expos in Ft. Lauderdale, and Doug of T.D. Medical introduced us to the EZ Power Chair.
I circled the entire showroom of J.D. Medical without spotting the EZ Power Chair that I had ordered. All of the personnel were busy at their desks, and my entrance hadn’t caught the attention of even one of them. Ron was still parking the car, and I felt alone as I stood in that field of dark shadows. Everything seemed to be black and contributed to my feeling of being a part of a dream . . . or was it a nightmare?
All of a sudden the enthusiasm I’d had about getting a power chair was gone. In fact, it now seemed like a hideous, bad idea. There was no way I wanted to associate myself with this blackness . . . this gloom . . . this . . . .
About the same time Ron came, the owner Doug also appeared, and enthusiastically he asked if I’d seen my chair. Forcing some anticipation into my voice and onto my face, I honestly replied, “No.” I didn’t dare tell him that 60 seconds earlier I had changed my mind about owning and using a power chair.
At home I practiced by taking the chair down two blocks of sidewalk to the mailbox. My driving skills, i.e. prowess with the joy stick, were horrid. I kept running off the sidewalk onto the grass. Even our dog, who accompanied Ron and me, worked to stay out of my way. My right arm was also hurting—badly. Ron switched the joystick to the left hand, and the trial-by-error down the sidewalk began anew that next evening. It wasn’t much better, as for 62 years my left hand had never had to perform such precise movements.
Fortunately I am still ambulatory for short distances and do not need to use the power chair that much in the house. But of course, I did give it a trial run. I learned a few things: carpeting and wheelchairs are not 100% compatible. And if I wanted to go into the kitchen, I needed to go around and through the living room and dining room, as the doorway from the hallway into the kitchen was a tight fit and not good for novice, left-handed, joystick users. When and if I need to use the chair fulltime, we’ll definitely need to change some flooring choices and maybe widen a few doorways.
My first trip to the mall with my power chair will forever be burned into my memory. With my sore right arm, (I now know that it was a torn rotator cuff.) there was no way I could lift the chair into and out of the car’s trunk by myself. Even though the power chair breaks down into three pieces, the heaviest piece is 29 pounds. My dear friend Evie was visiting and offered to accompany me on my trip to the mall—my first in three years!!! This was going to be a BIG day.
First we practiced taking the chair apart, putting it into the trunk, and then taking it out and assembling it again. With Ron and Evie’s husband, Al, looking on and offering all kinds of verbal instruction, we hoped that we had it firmly in mind, and off to the mall we went.
We parked at the Sears end of the mall, opened the trunk, and together took the base with the wheels out. Then we lifted the seat part out and attached the back part, unfolded the chair, and attached the front to the base. Once again together, we lifted the 29-lb. battery out, set it in its designated place and plugged it in. I plugged in the joystick, took my seat in the chair, and we were off.
But alas, getting through the door into Sears wasn’t all that easy. It felt like I had to literally go left, go right, go left, go right until I wiggled my way into the store. It was with a sigh of relief that we began my long-awaited, shopping trip.
What looked like “forward march” immediately became a “mine field.” As I passed by a round table with a long, blue skirt, it started shedding small boxes of jewelry. They tumbled off—falling randomly about me. I stopped, but I couldn’t see that I owned any responsibility for their action. I started to move—more boxes tumbled. I stopped—the boxes stopped. I’d start again—they’d throw themselves to the ground.
Needing some assurance that I wasn’t at fault, I looked around for Evie. There she was, immediately behind me, bent over in laughter. I mean, she was holding her sides she was laughing so hard. Catching my eye, she said, “Stop. Turn it off.” As I realized that I hadn’t been able to even start shopping without creating havoc. I was ready to cry. But there was my usually dignified friend laughing her head off. And that calmed me down, and I was able to see the humor.
As she untangled the hem of the table skirt from my chair’s axle, she continued to laugh. So instead of retreating to the car, I continued our “forward march” past numerous brightly colored tables with skirts, holding more boxes of jewelry.
Three hours later, with our purchases stuffed into the storage area under my seat, we headed back through Sears to the car. This time we by-passed the skirted, “mine field,” and I even made it through the doorway without bouncing back and forth, hitting its sides.
As we disassembled the wheelchair and placed its parts, plus our packages, into the car’s trunk, it was with a true sense of accomplishment and a smile on my face that I, the proud owner of a power chair, headed home.
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I hate to admit it, but when you receive the same e-mail from several people you tend to forget who sent it first – sooooo, please accept my thanks to all who sent this to me.
Three Things.....
Three things in life that, once gone, never come back.
1. Time
2. Words
3. Opportunity
*****
Three things in life that can destroy a person.
1. Anger
2. Pride
3. Unforgiveness
*****
Three things in life that you should never lose
1. Hope
2. Peace
3. Honesty
*****
Three things in life that are most valuable.
1. Love
2. Family & Friends
3. Kindness
*****
Three things in life that are never certain.
1. Fortune
2. Success
3. Dreams
*****
Three things that make a person.
1. Commitment
2. Sincerity
3. Hard work
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Reprinted from Daytona Beach News-Journal, OnCall column, June 16, 2008
Diabetes Mellitus:
a modern epidemic
by Dr. Gerald R. Miceli, MD
More than 20 million people in the U.S. have diabetes, according to the American Diabetes Association. Sadly, nearly 6 million of them are unaware that they have the disease. Annually the direct and indirect costs in this country surpass $134 billion.
Diabetes Mellitus is a chronic disease that occurs when the pancreas cannot produce adequate insulin to maintain normal blood sugars. As a result, there is a rise in blood glucose levels in response to food intake, and also to stress, infections and certain medications such as steroids.
Symptoms include excessive thirst, hunger, urination, poor wound healing and, in women, repeated vaginal yeast infections.
Within the last 10 years the incidence of diabetes has reached epidemic propor-tions, especially in our children. Weight gain, poor food choices and physical inactivity have put our population at increased risk for the disease. Patients with diabetes and pre-diabetes are at risk for cardiovascular events including strokes and heart attacks.
The diagnosis of diabetes can usually be made by your primary care provider. Diabetes is diagnosed if two blood samples drawn after a night’s fasting shows a glucose blood level that exceeds 126 mg/dl. The diagnosis also can be established if a random blood glucose level is 200 mg/dl or higher, or reaches 200 mg/dl on a two-hour oral glucose tolerance test.
Once the diagnosis is made, your primary care provider will begin a treatment plan which usually includes self monitoring of blood sugars as well as diabetes education and medical nutritional therapy. Physical activity can be an important part of a treatment plan, but the ability to perform physical activity must be approved by your physician.
Medications are often needed to improve glucose control. Today physicians have a choice of oral medications, injectable incretins or insulin to help control glucose levels. Your physician may request assist-ance from an endocrinologist who specializes in diabetes to assist in control of the disease.
Since diabetes affects many organ systems, close observation is necessary. Diabetes can damage eyes, nerves and kidneys, therefore comprehensive evalua-tions of these systems are necessary. All patients with Type 2 diabetes should have an eye exam upon diagnosis, and then yearly, or as directed by their eye care provider. Patients with Type 1 diabetes require an eye exam after five years of diagnosis and then yearly or as directed by their eye care provider.
Daily self foot exam is important and any problems should be reported promptly. Routine podiatry is recommended for nail clipping and preventive care.
Lipids are assessed on a regular basis to ensure that cholesterol and triglycerides are at optimal levels. The LDL or the “bad cholesterol” should be below 100 at the minimum. Medications, along with a low fat diet, are available to help achieve these goals. In addition to glucose testing, a blood test called a HgbA2C level is drawn periodically to assess control over the previous months. The American Diabetes Association recommends this level to be 7 percent or less.
Blood pressure also is important to control and ideally kept below 130/80.
The treatment plan involves many disciplines – the patient as well as multiple physicians and diabetes educators (including registered nurses and dietician).
Dr. Gerald R. Miceli is medical director for the Division of Endocrinology, Diabetes and Metabolism at Preferred Medical Center, Holly Hill, FL
FECPPSG Editor’s Note:- A few members of my family and some of my friends have diabetes so I thought it important to do the article in order to give those not in the Volusia/Flagler area a chance to read and learn for it.
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This article will appear in the Sullivan County edition of their "The Senior Gazette." July 4th issue, and in a new paper coming out in September, "The Disabilities Advocate" where it will appear in the first edition. Thank you Professor Kossove for allowing us to put it into our newsletter.
WE’RE STILL HERE AND SO IS POLIO
By Michael Kossove
In 1953 and continued polio hysteria, there were 35,000 diagnosed cases of polio in the United States. In 1955, after trials with the new Salk vaccine, the March of Dimes began a massive campaign to immunize everyone against polio. But that wouldn’t help those already stricken with the disease and had paralysis, which was amazingly a very small percentage.
Polio is a virus, and viruses are not alive. They can remain in nature indefinitely. There were three types of poliovirus, Type I - Brunhilde, Type 2 - Lansing, and Type 3 - Leon. Those stricken could have gotten any type, or combinations, or all three viruses. Polio is an enterovirus, meaning in the gut. It was most likely contracted through fecally contaminated water in lakes, pools, other swimming areas, or from the person him/herself.
Over the years research has proven that when the virus entered the gut, it may have replicated in lymphatic tissue and got into the blood stream. From the blood stream it went all over the body, but the only place that would allow the virus to attach to cells and replicate were the cells of the nervous system, i.e. the spinal cord and brain, and those cells had to have special receptor sites for the virus to attach. These sites were most likely genetic, and a small percentage of the population had them. Those nerve cells controlled muscle movement, thus paralysis. That’s why many children and adults may have been in contact with the viruses, and only a few got sick. Many who got sick were not paralyzed “non-paralytic polio,” and were never diagnosed, only to have polio come back and haunt them later in life.
Many, after some paralysis were able, over the years, to discard braces and crutches, and live a normal life. Research has shown that adjacent nerves, not destroyed by the virus, were able to grow sprouts (like extension cords) to the muscles that no longer received electricity from the damaged nerves. This, to our knowledge, is the only neurological disease where this happens.
But, 30 - 60 years later, these sprouts are destroyed by the body itself, returning many to braces, crutches, and wheelchairs. And in some cases, survivors become more paralyzed than they were with the initial infection. We call this “Post-Polio Syndrome…. If you got movement back, the theory of “use it or lose it” came into play. But the more active you were, the faster you lost it.
Many who were not paralyzed initially, or who went undiagnosed with non-paralytic polio, are now experiencing new pain, fatigue, muscle atrophy, and other symptoms, such as weak leg or ankle muscles, falling down, etc. After a comprehensive examination to rule out Amyotrophic Lateral Sclerosis (ALS), late onset Multiple Sclerosis, etc. with negative diagnoses, the patient is asked if he/she ever had polio. If it was undiagnosed because of no paralysis, or the children were infants and got movement back and parents never told them. Polio was the most feared and dreaded disease of the twentieth century. Neighbors, friends, even relatives shunned and avoided the survivors and their families even after the chance of contamination had passed.
Therefore many children were never told that they had polio if it was non-paralytic. At our age, who can we ask. Most of our parents have passed on. If you fit this category, you may have contracted polio as a child and have never known it.
Because international air travel makes it easier to travel to third world nations where polio is still unchecked, and more paralytic, it is imperative that children still receive their immunizations. There are certain groups that do not believe in immunization of any kind, and are subject to a host of diseases including polio. It wasn’t so long ago that there was an outbreak in one of those communities in Minnesota from a child carrying the virus from another country. Young parents today especially concerned about the problems seen with some vaccines, might tend to forego the polio vaccines for their children, thinking they are not important. The more people in the community without the polio vaccine, allows the viruses to enter their bodies and cause disease. If this becomes a trend, polio will reappear, and probably with a vengeance.
To think, after all of these years, that polio does not exist any more is a misnomer. Like I said before, the viruses are not alive and can exist in nature indefinitely. No one gets sick because we were all immunized, and if the polio virus enters your body, your immune system will destroy it.
The viruses may very well be in the same places where those stricken contracted them. Over the years, polio has been forgotten, only to be made aware of when seeing a survivor wearing leg braces. Children today, and many of you reading this, have no idea of the panic our parents were feeling each summer when the polioviruses began to attack infants, children, and adults.
There are Support Groups for polio survivors in almost every state with monthly meetings and conferences. There is a published list of these groups, and the names of physicians and therapists who know how to diagnose and treat Post-Polio Syndrome. Conventional Physical Therapy can further damage muscles.
I would like to start a Post-Polio Support Group in Sullivan County. If you are reading this article, are a polio survivor, and are interested in joining such a group, please contact me: 583-8436 or mkossove@touro.edu. Please put “polio” in the email description.
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Michael Kossove is a Professor of Microbiology at Touro College in NY He is a polio survivor, and has been researching polio and Post-Polio Syndrome for over 20 years. He speaks to Polio Support Groups and at polio conferences across the country. He has a home in Kauneonga Lake, and is a member of the Bethel Volunteer Ambulance Corps.
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The following article is by one of our Pennsylvania members (who was originally one of the members of the Long Island PPSG that I was active in). Rita loves traveling with her husband, John, and does a wonderful job for us on reporting her experiences. Thank you, Rita.
ALASKA BY SMALL BOAT
By Rita Henning
Two years ago we traveled to Alaska on a Princess cruise/tour and I thought Alaska was so spectacular I wanted to see it again. Last year we cruised the Columbia River in Portland, OR, on the “Empress of the North”, a paddle-wheel steamboat. It carries only 225 passengers and we enjoyed it very much because it was so easy for me to get around. From May-September it cruises round-trip from Juneau, so in May we decided to see Alaska in a small boat, which can travel the Inside Passage to places the big ships can’t go.
I use forearm crutches, but always get a wheelchair in the airports. We prefer that my husband push me, rather than the escort, so we can use the airport bathrooms, eat and leisurely make our way to the next gate. We traveled from Harrisburg, PA to Seattle the first day, so we could break up the flying time into smaller segments. We allow lots of time for connecting flights and had a four hour layover in Dallas. We spent much of the time riding the skytrain between terminals, finding a restaurant, getting lost and getting to our gate. It does seem that the elevators are always in the opposite direction from where you have to go.
Upon arrival in Seattle our escort insisted he had to stay with us and we were glad he did. We landed in an outlying terminal and our escort took us to several elevators, an underground train, more elevators, baggage claim, more elevators and then to the parking garage where we met the hotel shuttle van. I don’t think we could have found our way without him.
The next day we flew to Juneau. It was a beautiful, warm, sunny day and the hotel lent us their wheelchair so John pushed me all over downtown Juneau, which was a treat. We hired a taxi the next morning to take us on a tour, since we had already been to the major tourist sites. A bus took us from the hotel to the boat in the afternoon. Since we had cruised on this boat before, I knew I would need a raised toilet seat and had requested one when we made our reservation. I was also able to use the boat’s wheelchair for our shore stops and the crew wheeled me on and off the boat each time. They were very accommodating.
On our last trip we were blessed with sunshine every day; this time we had lots of rain. Even though many days the mountains were obscured by fog, it was beautiful, especially when the sun would suddenly come out and illuminate a snow topped mountain far in the distance. We stopped in Skagway and used the boat’s wheelchair to walk around the town. In Glacier Bay we spent the day slowly cruising and enjoying the scenery (in the rain). Sitka was a new town for us and we toured the Russian Orthodox Cathedral and the Raptor Center where they rehabilitate injured birds of prey. We saw eagles up close and personal, and also visited the Native American heritage center (it was a sunny day).
Our next stop was Petersburg: “Little Norway”. A group of children dressed in Norwegian costume came on board and performed several dances for us which was a treat. Since it was raining heavily, we did not get off the boat and explore the town. The next day we went to Wrangell, which is a fishing village largely inhabited by Native Americans. We went to an Indian “long house” and visited the museum. Neither of these towns is visited by the big ships.
The last day we went to Tracy Arm Fjord; huge granite cliffs, lots of gushing waterfalls, icebergs floating in the water; truly a beautiful place. We could not get to the glacier because there was still too much ice. The Captain spent five hours cruising in Frederick Sound and we saw dozens and dozens of whales, some of them close enough to the boat we could hear the sound of their spouting. It was an amazing sight! We also saw mountain goats, lots of eagles and hundreds of sea lions on this trip. A Discovery Guide is on board all week giving talks about the area and reports whenever wildlife or anything of interest is sighted. The Captain slows down or comes to a complete stop so everyone can enjoy it, which is a great benefit of small ship cruising.
All too soon we were back in Juneau and brought to the hospitality area of the hotel, where we waited until it was time to be taken to the airport. We flew to Seattle, and knew enough to let the escort lead us to baggage claim. We spent the night with friends and flew back home the following day, via Chicago.
We flew 8,000 miles on six different flights and they were all smooth and uneventful. Wheelchairs were available as soon as I deplaned. Our only problem was departing Seattle, where we had to first check in on a long line; a wheelchair arrived after quite a long wait, which was rather tiring for me.
Cruising is a great way for a disabled person to travel because you unpack once and can stay on the boat the entire time if you choose to. I find the hardest part of traveling is using the bathrooms in public places (not all are handicapped friendly), and getting out of chairs. (At home I have a lift chair and I try to always use a chair with arms.) It is especially hard prying myself out of airline seats. On the boat I requested a chair with arms and one was provided for me. It was open seating for breakfast and lunch but the crew understood that that was “MY” chair at “MY” table, which was very thoughtful. This trip we did meet a lot of people who went out of their way to offer their help. One woman stopped us on the streets of Juneau and wanted to push me (it was uphill and difficult for John). Macho man turned her down! (With his arthritic knees it is easier for him to walk holding on to the chair.)
It is also difficult getting on and off vans and busses, especially in Alaska where some of the shore excursions use equipment that is not up to date. Fortunately, John has perfected the art of pushing me up the steps and hoisting me out of chairs. I would find it all but impossible to travel without him. It is not always easy traveling, but I’m glad that we are giving it a try; for me it is worth the small inconveniences to finally see the beauty of the USA.
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The following was sent via e-mail from Dr. Jerome Axelrod. I’m sure his marriage is like this one. I know that it’s the kind of “love I want in my life”.
How To Dance In The Rain
It was a busy morning, about 8:30, when an elderly gentleman in his 80's arrived to have stitches removed from his thumb. He said he was in a hurry as he had an appointment at 9:00 am.
I took his vital signs and had him take a seat, knowing it would be over an hour before someone would be able to see him. I saw him looking at his watch, and decided, since I was not busy with another patient, I would evaluate his wound.
On exam, it was well healed, so I talked to one of the doctors, got the needed supplies to remove his sutures and redress his wound. While taking care of his wound, I asked him if he had another doctor's appointment this morning, as he was in such a hurry. The gentleman told me no, that he needed to go to the nursing home to eat breakfast with his wife.
I inquired as to her health. He told me that she had been there for a while and that she was a victim of Alzheimer's Disease. As we talked, I asked if she would be upset if he was a bit late. He replied that she no longer knew who he was, that she had not recognized him in five years now.
I was surprised, and asked him, 'And you still go every morning, even though she doesn't know who you are?' He smiled as he patted my hand and said, ' She doesn't know me, but I still know who she is.'
I had to hold back tears as he left, I had goose bumps on my arm, and thought, 'That is the kind of love I want in my life.'
The happiest people don't neces-sarily have the best of everything; they just make the best of everything they have.
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'Life isn't about how to survive the storm, but how to dance in the rain.'
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Answer to Word Puzzle
Answer:
No, it is not that they all have at least 2 double letters. (Thought I had the answer, but I did not go far enough.)
Give it another try. Look at each word carefully.
Are you peeking or have you already given up?
This Is Cool.
Now – if you take the first letter of the word and put it at the end, the word is spelt the same……, i.e., banana – put the b and the end, turn it around, and it’s the same…..
Now, that really is cool….
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Please don’t forget to send back the “Conference Reservation” form as quickly as possible, or e-mail us at bgold@iag.net, or call Barbara at 386-676-2435. Our regular meeting place may not be big enough to hold the meeting so we have to find another facility.
Hoping you all have a g-r-e-a-t
Summer! See you in September.
Take care….
Barbara
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FLORIDA EAST COAST POST-POLIO SUPPORT GROUP
12 ECLIPSE TRAIL - ORMOND BEACH, FL 32174-4936
386 676-2435 e-mail:- bgold@iag.net
CONFERENCE MEETING FORM
DATE: Sunday, January 18th, 2009
TIME: ?
PLACE: ?
TOPIC: DR. MARY ANN KEENAN, Chief Neuro-Orthopedic Department of University of PA Hospital, Philadelphia, PA.
Dr. Keenan will be speaking on surgery and bracing.
Please let me know if you are interested in attending by sending back the below tear sheet no later than August 15th, 2008.
Any questions call Barbara at 386-676-2435 – or – email at bgold@iag.net.
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January 18, 2009 “Conference” Meeting
YES, I’m interested in attending….
Name:- _______________________________ Phone No.:- _________________
Number of People Attending:- _________
Number in Wheelchair(s):- ___________
Please send tear sheet back to Barbara at:
FLORIDA EAST COAST POST-POLIO SUPPORT GROUP
12 Eclipse Trail - Ormond Beach, FL 32174
07/2008
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DUES FOR 2008- Please take a look at your mailing label - on it you’ll see the month and year we received your 2007dues, i.e., 01/2007 means it was received in January 2007, so your 2008 dues was due in January 2008. If your mailing label has the year first and then the month, i.e., 2007/01 it means that you indicated to us in January 2007 that you wanted to receive the newsletter but paid no dues. That’s OK as we still believe that anyone who wants information should receive it – but we do need you to return the tear sheet with either the “Dues” box checked or the “Keep me on the Mailing List” box checked.
Your dues covers the supplies we need to send out the information packets to all inquiring about Post-Polio Syndrome, any other correspondence we do, and postage for publicity and for the out-of-country (25) newsletters that we send out. We’re fortunate in that the “Free Matter for the Blind and Physically Handicapped” status takes care of the postage for the over 450 newsletters sent out within the United States. We network with approximately 60 other support groups throughout the United States, Canada, Australia and New Zealand – some 40 of these reciprocate by sending us their newsletters. We receive as many dues checks from our out-of-state members as we do from our Florida members. So, please check your mailing label and return the tear sheet if your date is due. We really need your support now more than ever. Just to keep you advised, in addition to the previously mentioned countries, our newsletter goes to England, France, Germany, Israel, Panama, Portugal, Lebanon, South Africa, Sweden, Taiwan and Wales.
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WHEN YOU MOVE PLEASE be sure to send us your new address. Sometimes the post-office will return the newsletter to us with a “forwarding period expired” notice on the front with your new address but most of the time they are just returned to us with “address unknown” on it. SO, if you want to continue receiving the newsletter it is UP TO YOU to make sure we have your new address.
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2008 DUES/MAILING LIST
____ Dues Enclosed ____ Keep me on mailing list
If sending dues, please make Check ($5.00) Payable to and Mail to:-
FLORIDA EAST COAST POST-POLIO SUPPORT GROUP
12 Eclipse Trail, Ormond Beach, FL 32174-4936
NAME:- __________________________________________________________
ADDRESS:- _______________________________________________________
E-MAIL ADDRESS:-__________________________ FAX #:- _______________
TELEPHONE NO:- Home _______________________ Office ________________
Date of Birth:-_________________ Wedding Anniversary:- ________________
Name and Date of Birth of Spouse:-_____________________________________
07/2008