10^thANNIVERSARY LUNCHEON

We had a very nice turn-out for our 10^th Anniversary, including welcoming several newcomers, as well as some members we haven’t seen for some time and some that came from as far away as St. Petersburg, Ft Pierce and Sebastian.  Thanks to all for joining us on a day when the weather was not cooperating.

          Dr. Thorsteinsson’s presentation and, especially, the question and answer period were well received.  There was also a demonstration of a new type of crutch.

          We look forward to seeing everyone at future meetings.

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Editor’s Note:-  As you know from past newsletter, we sometimes put in articles that have nothing to do with Post-Polio Syndrome but which we feel is of interest to many of our members.  This newsletter will have a couple of such articles. 

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          When I had my lumpectomy last November, the surgeon told me they had done a “Sentinel Node Biopsy” and didn’t have to go further with removing anything.  I wasn’t quite sure what that meant but like most of us, didn’t really want to ask.  Well, The following article explains exactly what happens –

Reprinted from REMEDY, Summer 2003

SENTINEL NODE BIOPSY

          When a woman finds out she has breast cancer, her first thought is whether she’ll survive.  But for many women, the good news that they caught the disease before it could spread is often tainted by the long-term repercussions of removing lymph nodes from under the arm.  This procedure can cause lasting arm pain, numbness and swelling for more than 80 percent of patients, the National Cancer Institute reports.  Now, a surgical option called sentinel node biopsy can reduce those problems dramatically.  In the procedure, a specially trained surgeon injects the tumor with dye, then watches the dye’s path as the body’s drainage system carries it toward the lymph nodes.  When the dye reaches the first one or two lymph nodes – called the sentinel nodes – the surgeon removes them, leaving the rest intact.  If no cancer cells are found in the sentinel nodes, it’s likely the disease hasn’t traveled beyond them.

          Research is still under way to make sure that sentinel node biopsy is safe and effective over the long term.  “We really don’t know everything about it,” says an Platner chief program officer for the National Breast Cancer Coalition.  “You’ve got to go to a hospital where they really know what they’re doing.”

          But in the hands of an experienced surgeon, studies suggest that the newer procedure is just as good at finding out whether cancer has spread, and leaves patients in much better condition after surgery.

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IN MEMORY OF

It is with great sorrow that we extend our sincere condolences to the family and friends of PATRICIA HUSEMANN.  Pat has been a member of our Support Group from the first meeting. 

Again, our sincere condolences to her family.

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Reprinted from Volusia Health Care News, Summer 2003

BURNING, STABBING PAIN OF SHINGLES

RELIEVED

                                                                                                                                                By Vinod K. Malik, MD

          Though not widely discussed outside of the medical community, shingles are one of the most common causes of chronic pain, informs Vinod K. Malik, MD, a Diplomate of the American Board of Anesthesiology and the American Board of Pain Medicine.  “Shingles, otherwise known as herpes zoster, usually begins as an inflammation of nerve roots where they exit the central nervous system at the spinal cord.

          “The inflammation travels along the branching peripheral sensory nerve s and causes pain.  Blisters and a rash of red bumps typically form on the skin over the affected nerve fibers.”

          Shingles is caused by a herpes virus, but not the same virus which causes common cold sores or the genital herpes infection typically referred to simply as “herpes,” explains Dr. Malik.

          “It is actually caused by the same virus that causes chicken pox, often experienced in childhood,” he says.  “That virus remains dormant in the system.  When the immune system is compromised, or after about age fifty, the virus may reemerge in the form of shingles.  Shingles can be confirmed with a tissue culture and blood analysis.”

Early treatment is essential, and maintaining a healthy immune system becomes a lifetime goal to prevent recurrences.

          “The acute phase of shingles,” clarifies Dr. Malik, “is when the rash appears.  Once the rash appears, it can take several weeks for it to dissipate.  Even after the visible signs of the rash have subsided, some nerve pain can persist below the skin’s surface.  This continuing pain after the initial outbreak of shingles is called post herpetic neuralgia (PHN).

          “Shingles is medically treatable, but not curable,” adds Dr. Malik.  “It may express itself again whenever the patient has a cold or is under stress.  It is important to check out any pain or rash right away, even if you are not sure what it is.  Seniors, especially, need to be aware that it could be shingles, and if so, we need to start treatment right away.

          There are anti-viral medications available which are effective, but they must be used within 24 hours of the initial onset of the burning sensation on the skin,” emphasizes Dr. Malik.  “Early treatment helps diminish the time the rash remains, and it helps prevent PHN.    We also prescribe medications for the itching and pain.

          “A new chicken pox vaccine has come out, and it may help prevent people from getting shingles in the future,” notes Dr. Malik.  “It is now recommended – though not required – that children be inoculated with this vaccine at twelve months of age.”

          Because the virus continues to live in the patient, shingles can recur and must be managed long-term by keeping your doctor informed of any recurring symptoms.  It is important to try to maintain a healthy immune system, overall good health, proper hygiene and nutrition, and effective means of stress reduction.

TREATMENTS FOR PAIN

Chronic pain is among the most common ailments and affects most people at some point in their lives.  For shingles sufferers, there are many potential solutions.

          “Today, there are a number of modalities available for relieving chronic pain,” assures Dr. Malik, “and research provides us with new options all the time.  It is important for our patients to understand that our knowledge and treatment options are not limited to just one or two choices, and that those we do offer have been carefully examined and considered before we will suggest them to our patients.

          “PHN pain often responds to medical treatment, including narcotics, anti-depressants, and anti-epileptics such as Neurontin®.  If these treatments do not prove sufficient to alleviate pain on a long-term basis, many patients will respond to more advanced types of treatments, including nerve blocks (steroid injections), radiofrequency, and local anesthetic patches such as Lidoderm®, a dermal patch that contains the pain-relieving drug lidocaine.

          “It is vital that we have access to a number of pain management modalities, because we know a treatment that works for one patient may not necessarily be the right choice for another,” he continues.  “For example, when local anesthetic patches or other conservative measures fail to bring patients the complete pain relief that is always our ultimate goal, I may suggest one of the minimally invasive treatments I have used with good success for patients with unrelenting pain.”

          For patients who do not respond to conservative therapies, Dr. Malik may recommend a spinal cord stimulator (SCS).

          “If the patient experiences pain in the arms, legs or chest wall, the stimulator is an option,” explains Dr. Malik.  “Spinal cord stimulation involves the electrical stimulation of a precise location in the spinal cord.  This interrupts pain signals normally sent by nerves to the brain.  The system can be operated automatically or manually.  Automatic operation also allows the SCS to operate even while the patient is sleeping.”

          PHN pain may also be treated with an implantable pump that delivers accurate doses of pain-relieving medication to a targeted area, says Dr. Malik.

          “The implantable pump continuously and precisely delivers an analgesic medication, such as clonidine or fentanyl,” explains Dr. Malik.  “Low, targeted doses of these medications can provide pain relief without the ‘dimming’ of consciousness of a systemic modality, and without the risk of addiction.  As a patient’s needs change, the dosage may be increased or decreased.  The pump is checked and refilled regularly in a simple procedure that takes just a few minutes.”

          The advanced pain management techniques currently available at PRC Associates are truly remarkable, and these techniques continue to advance.  “More than ever before, we are winning the battle against previously ‘unresolved’ pain,” assures Dr. Malik.  “We want patients with chronic pain to know that they have viable options available under the medical care of PRC Associates.

FHCN – Billie S. Noakes

FECPPSG Editor’s Note:-  Dr. Malik was a speaker at one of our meetings about two years ago – he spoke about pain management.  This is NOT a “plug” for Dr. Malik’s office but learning about Shingles, I felt was important – If you want to reach Dr. Malik, give Barbara a call at 386-676-2435.

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Reprinted from Post-Polio Network (NSW) Inc., Network News, May 2003, with permission from author Mary Westbrook.

POLIO PARTICLES  12

Synthetic polio virus manufactured

Dr. Eckard Wimmer, head of a biomedical research team at the State University of New York made a polio virus in a project funded by the Pentagon to combat biological warfare.  Reporting on US Tech Live TV, Jessica Rappaport said that what is disturbing is that the team re-created the virus by using the Internet to obtain the virus’s genome sequence.  It took three years to create the virus.  Wimmer says he choose polio because it’s a relatively simple virus.  Re-creating a virus like smallpox would be much more complicated.  Wimmer says the ability to manufacture polio means that even if polio becomes extinct people will still need to be vaccinated and vaccines will need to be stockpiled because of the threat of terrorism.

West Nile virus mimics the effects of polio

There were numerous recent news releases about the US outbreak of mosquito-borne West Nile virus and the surprising symptoms it is causing in some of those infected.  The Boston Globe (24/9/02) described stunned neurologists in Mississippi and Georgia reporting patients suffering from the hobbled limbs, impaired breathing, and fevers that are the hallmark of polio.  Patients are also enduring prolonged muscle weakness and respiratory ailments that will require months of treatment and probably will disable some of the patients permanently.  As with polio the symptoms tend to be asymmetrical, et – one leg affected.  The West Nile virus which is common in Africa and the Middle East was first detected in the US in 1999.  Mosquitoes acquire the virus from birds and pass it on to other species.  The description of the infection will sound familiar to polio survivors.  Most people who are infected develop no symptoms, or flu-like symptoms.  About one percent becomes severely ill with encephalitis or meningitis and about 10% of these people die.  The West Nile virus comes from a different group of viruses than polio virus.  In the polio-like cases of West Nile the virus attacks the grey matter of the spinal cord which contains the neurons that cause muscle movement.  Only a small number of polio-like cases have been reported but is now believed that many patients with West Nile virus may have been misdiagnosed eg as having Guillain-Barre Syndrome, and prescribed potentially life-threatening treatments.  In the past severe West Nile was characterized by meningitis and encephalitis but the muscle weakness and other symptoms similar to polio were not evident.  Nature (23/10/02) says that the West Nile virus and its infection pattern may be changing over time --- attacking other parts of the nervous system beside the brain…  The US population might be particularly susceptible to attack by the virus. Unlike populations in regions where West Nile is endemic, they may lack natural immunity.  Alternatively, the virus itself could be different. ‘There does seem to be an evolutionary change in the virus,’says neurologist, Richard Johnson of Johns Hopkins University.  The US strain, seems to attack the nervous system more.  There is no vaccine or any specific treatment for West Nile virus apart from supportive care.  There is no effective treatment for West Nile’s polio-like symptoms and doctors are unsure as to what will happen to these patients in the long term.

Polio in Madagascar

In March-April 2002, four cases of paralytic polio were reported in Madagascar.  None of the children affected had been fully vaccinated.  The strain of the virus was a type-2 vaccine derived virus which had mutated and recombined with non-polio enteroviruses.  The danger of Sabin vaccine virus mutating and affecting non-vaccinated people was discussed in a previous column.

Did older people have polio more severely?

For many years it has been accepted wisdom that the severity of polio increased with age at infection; older patients being more likely to develop paralysis or die from the disease.  TO find out whether this is so, a group of Danish researchers, headed by Nete Nielson, examined the patient records of 5590 people who contracted polio between 1940 and 1953 and were admitted to the main infectious disease hospital in Copenhagen.  They found that severity of polio (measured by rates of paralysis and death) did not show a steady increase with age, but rather a U-shaped graph with severity being greatest for youngest and oldest patients.  Fifth-three percent of children under 2 had a discharge diagnosis of paralytic polio.  The rate decreased 20% among those aged 8-9 years and increased to 43% among those over 35 years.  The steep increase in severity of polio among young adults was associated with a change in type of paralysis, with respiratory paralysis being much more frequent.  The researchers speculate that this was caused by differences in the commonest mode of transmission of the polio virus for children and adults.  The faecal-oral route of transmission is usually considered the main mode of virus spread, but as the virus is present in the pharynx, droplet spread from person to person is possible. As adults have better sanitary practices than children they may more often be infected via droplet spread.  Furthermore it has been suggested that bulbar symptoms might result from infection with the virus through the tonsillo-pharyngeal route, whereas gastro-intestinal infection might initially result in paralysis of the legs.  (International Journal of Epidemiology, 2002, p. 181)

Mice may provide answers about cause of PPS

Neurologist, Dr. Burk Jubelt and his colleagues are using mice in research to test the truth of the three principal theories that attempt to explain post-polio syndrome.  Jubelt and his colleagues infected a group of mice with polio and are comparing their muscle function and nerve damage with a group of non-infected mice.  Later the mice were sacrificed and their tissue analysed.  Findings of the research will be published soon.  A group of mature mice, analogous to older polio survivors, is currently being studied.  The theories being evaluated are:  1) The most popular, degenerative theory, which postulates that the new sprouts which grew to substitute for the sprouts killed by the original infection are dying back due to exhaustion from increased metabolic demand over years of use. 2) The viral theory that argues that the polio virus has either lain dormant in the central nervous system or mutated into a form that is slowly destroying nerve tissue.  3)  The immune mediated theory mediated theory that argues that inflammation or an autoimmune mechanism has led to the symptoms.  Jubelt believes that once the cause of PPS is established mice can be used to test the efficacy of different treatments for symptoms.  (This story is from Polio Network News, Fall, 2002).

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POLIO PARTICLES  13

Penalty for speeding wheelchairs

Valley College in Los Angeles has imposed a campus speed limit of 4 miles per hour on wheelchairs.  People caught speeding may be expelled.  No wheelchairs collisions have been reported at the college but the vice-president of administration pushed for the policy after seeing a wheelchair user going very fast.  ‘It’s like a bad joke,’ said 56 year old Lynn Eiler, ‘We figured they’ve got to be kidding that we might be a danger to somebody.  In fact we have to watch out for everybody else’ (New Mobility, January 2003).  The Center for Individual Freedom (www.cfif.org) discusses the situation in its column, Jester’s Courtroom.  We’re curious to see how Valley College administrators plan to enforce this new ‘safety’ measure.  Will student fees be used to install radar cameras?  Better yet, Jester’s Courtroom readers stay tuned as some trial lawyer somewhere has got to be scheming up an argument to slap on Valley College – maybe the tried and true Americans with Disability Act.

Hotel pays accessibility damages

For the first time in the Netherlands a person with a disability has received compensation for inaccessibility in a hotel.  An official advisory council to the Dutch government booked the Sheraton Pulitzer for its two day annual meeting after being assured that it would be accessible for the vice-chair, Ms Koster, who uses an electric wheelchair.  She was told that only the door to the function room bathroom might be too narrow … but I could use the accessible bathroom across the corridor.  In reality she could not access the function room or the restaurant without help from others to get up steps.  The accessible bathroom was not adjacent to the function room but in the lobby.  The door to her bedroom was too narrow.  When she asked for a room with a wider door staff told here there were note and left her to fend for herself.  As Ms Koster could not stay for the night she went to inform her colleagues she was leaving.  There were in the bar and as it was inaccessible she was unable to tell them.  The council took the matter to a lawyer.  The hotel settled, paying C4,800 to the council and C1,200 to Ms Koster.  The hotel’s reaction has been to place a ‘Not suitable for wheelchairs’ notice on its website’.  (Story from Disability World 9/2002)

Note from Barbara:-  We know that a similar situation could happen here in the US, -BUT the final outcome would be that the hotel would have to make itself accessible and adhere to the Americans with Disabilities Act.

Results of polio treatment enhanced by warm climate.

The Norwegian Journal Tidskr Nor Laegeforen published (6/2001) the results of a study by Y A Strumse and others showing that Norwegian polio survivors receiving a month’s November/ December) treatment in Tenerife experienced greater benefits than their counterparts who underwent similar treatment in Norway.  Patients were randomly assigned to the Tenerife program, the Norway program or a control group.  Patients were tested at the beginning of the research, immediately after the program and three and six months later.  While both treatment programs resulted in gains, the Tenerife group improved more and the effects lasted longer.  For example, at the conclusion of the program the Tenerife group had increased the distance they could walk in six minutes by 82 metres while the Norway group only increased their walking distance by 46 metres.  The pain  levels of the Tenerife group also fell more and the improvements lasted longer.  The midwinter climatic difference between the Canary Islands and Norway is considerable but one can’t help wondering if the excitement of a holiday in an exotic locale might also have contributed to greater enthusiasm, optimism and extra-curricula activities among the Tenerife patients.  Perhaps you can persuade your health fund to send you to Port Douglas for treatment.

Note from Barbara:-  Isn’t the warm climate of Florida the reason we moved down from the North??  I find it much easier getting around down here than when I’m on Long Island in the cold weather…..

FECPPSG Editor’s Note:-  Please note –

We used only a portion of each of Ms. Westbrook’s Polio Particles.

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POST-POLIO HEALTH INTERNATIONAL

Formerly, Gazette International Networking Institute (GINI)

Gazette International Networking Institute (GINI) has changed its name to Post-Polio Health International and has developed a new membership structure.  Post-Polio Health International will continue to respond to the needs of ventilator users through its affiliate, International Ventilator Users Network.

The new name, Post-Polio Health International, clearly focuses on living with the late effects of polio and reaffirms an ongoing interest in international issues.  Post-Polio Health International is meant to project the broadest meaning of “health,” encompassing the physical, emotional, social, psychological, and spiritual aspects of individuals’ lives.

The new membership structure is designed to strengthen Post-Polio Health International’s ability to advocate for its constituents.

Current newsletter subscribers are automatically members of Post-Polio Health International and/or its affiliate International Ventilator Users Network.

Not already a subscriber?  To become a member, go to http://www.post-polio.org/

order.html


 

Thank you.  Post-Polio Health International (PHI) –

4207 Lindell Blvd #110, Saint Louis, MO 63108       314-534-0475      314-534-5070 fax

info@post-polio.org               www.post-polio.org
 

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This is another item that came from an e-mail from a good friend.  Many thanks….

Tips for staying Healthy  

Q: I've heard that cardiovascular exercise can prolong life. Is this true?

A: Your heart is only good for so many beats, and that's it... don't  waste them on exercise. Everything wears out eventually. Speeding up your heart will not make you live longer; that's like saying you can extend the life of your car by driving it faster. Want to live longer? Take a nap.

Q: Should I cut down on meat and eat more fruits and vegetables?

A: You must grasp logistical efficiencies. What does a cow eat? Hay and corn. And what are these? Vegetables. So a steak is nothing more than an efficient mechanism of delivering vegetables to your system. Need grain? Eat chicken. Beef is also a good source of field grass (green leafy vegetable). And a pork chop can give you 100% of your recommended daily allowance of vegetable slop.

Q: Is beer or wine bad for me?

A: Look, it goes to the earlier point about fruits and vegetables. As we all know, scientists divide everything in the world into three categories: animal, mineral, and vegetable. We all know that beer and wine are not animal, and they are not on the periodic table of  elements, so that only leaves one thing, right? My advice: Have a burger and a beer and enjoy your liquid vegetables.

Q: How can I calculate my body/fat ratio?

A: Well, if you have a body, and you have body fat, your ratio is  one to one. If you have two bodies, your ratio is two to one, etc.

Q: What are some of the advantages of participating in a regular exercise  program?

A: Can't think of a single one, sorry. My philosophy is: No Pain - Good. 

Q: Aren't fried foods bad for you?

A: You're not listening. Foods are fried these days in vegetable oil. In fact, they're permeated in it. How could getting more vegetables be bad for you?

Q: What's the secret to healthy eating?

A: Thicker gravy.

Q: Will sit-ups help prevent me from getting a little soft around the middle?

A: Definitely not! When you exercise a muscle, it gets bigger. You should only be doing sit-ups if you want a bigger stomach.

Q: Is chocolate bad for me?

A: Are you crazy? Cocoa beans... Another vegetable. It's the best feel good food around!

I hope this has cleared up any misconceptions you may have had about food and diets - it works for me! .....

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Reprinted from Colorado Post-Polio Connections, Spring, 2003, with permission from author Larry Kohout.  Thank you Larry…

Polio Confusion  and

Seeming Contradictions

By Larry Kohout 

“What type of polio did you have?” 

“I had spinal bulbar polio.” 

“No, I didn’t mean where did you have polio, I meant to ask the type of polio you had?”

“Oh, I had paralytic polio.”

“No.  That’s a description of the damage polio did.  I’m asking about the polio virus you had, do you know the type of polio virus you had?”

“No!”

So what is all this confusion?  Mostly it is the imprecision of our language.  Poliomyelitis is a disease caused by a poliovirus.  Please notice that I said A poliovirus.  There are numerous strains of polioviruses but they all belong to one of three poliovirus types.  These virus types have a dual identity in that they are called type 1, 2, or 3 and also have the name of the person from whom this unique virus type was first extracted.  They are known as:

¨      ¨      Type 1 - Brunhilde

¨      ¨      Type 2 - Lansing

¨      ¨      Type 3 - Leon

In 1951, when Dr. Jonas Salk finished his virus typing program, he had proven that all the known polio viruses belonged to one of these three polio types.  The importance of this is that in order to develop a vaccine that would provide immunity to polio viruses you had to know all the viruses that could cause illness.  If you are infected with the type 1 virus you develop an immunity to that particular virus type and can’t be made sick by it again.  However, if you are now exposed to the type 3 virus you can be made sick by that virus type.

Prior to the development of the vaccines, a group of people contracted polio multiple times.  They number about two percent of the total polio population.  This unlucky minority contracted one virus type, were made ill, developed an immunity, and recovered with greater or lesser residual after effects of the disease.  Then they contracted a second virus type, were made ill a second time, developed an immunity to that virus type, and again recovered with more residuals.  And finally, a very small minority of this group had the distinction of repeating this process a third time.  And I thought I was lucky.

Both of the existing polio vaccines carry a mixture of all three virus types, so when you are inoculated with a full regime of vaccine you develop an immunity to all three types of polio viruses.  However, those of us who have had polio but have never been inoculated with either of the vaccines have an imperfect immunity.  We only carry antibodies to the single virus type that infected us.

Just a word on the importance of all this.  If you are living in the US with no plans to leave the country and no contact with people from countries where wild polio is active you have little or nothing to fear from not being vaccinated.  In fact all of the Americas and all of Western Europe have been polio free for years.  Only India and Africa continue to have active wild polio.  China is within a year of being declared polio free.  Travel in these countries or possibly contact with people just here from those countries might put you in danger.  The safest course is complete vaccination. 

Now, how does this relate to bulbar or spinal polio?  These terms describe how the poliovirus damage affects a person’s body.  Poliomyelitis is a term coming from Greek terms and essentially meaning inflammation of the gray matter of the spinal cord.  We know now that the gray matter is made up of the anterior horn cells or the motor neurons that transfer signals from the brain to the muscles.  Without these signals the muscles lie flaccid and eventually die. 

If the damage to the motor neuron is such that muscles in the legs are not functional then it is clear that the damage is lower in the spine and you were said to have had spinal polio.  But there are twelve cranial nerves that branch out in the brain stem or the bulb of the brain.  These nerves control the sense of smell, sight, eye movement, pupil constriction, eye lid movement,  muscles of the face, jaw, tongue, sense of taste, sense of hearing, sense of orientation, and the swallowing muscles.  According to a paper by Dr. Henry Holland (Cranial Nerve Function) Bulbar polio would most commonly affect the 9^th through 12^th cranial nerves resulting in problems of swallowing, breathing, and speech. 

I think it is important to realize that a diagnosis of spinal polio or bulbar polio or spinal/bulbar polio was made based on observation.  If you couldn’t move your legs you had spinal polio.  If you were having difficulty swallowing you had bulbar polio.   No one conducted any tests on you; the diagnosis was made based on observation. 

Finally, let’s talk about the terms paralytic polio and non paralytic polio.  Once again these terms were assigned based on observation.  But here later information has shown that the power of observation was flawed.  In their paper Non Paralytic Polio and PPS, Marcia Falconer and Eddie Bollenbach observed that the terms paralytic polio and non paralytic polio are a distinction without a difference.  This is because non paralytic polio only appears to have been non paralytic.  But it is entirely possible that a person who was diagnosed as having had non paralytic polio could have had as many as 50% of the motor neurons driving any particular muscle completely destroyed.  It takes the destruction of more than 60% of the motor neurons before it is possible to detect weakness of a muscle by a manual muscle test. 

So paralytic polio was a term assigned to those who had noticeable paralysis and spinal polio was assigned to those whose paralysis was confined to nerves that branch out in the spine and bulbar polio to those with paralysis in nerves that branch out in the brain stem (or bulb).  All of this is separate from the type of polio virus that one was infected with which might have been any of the three types Brunhilde, Lansing, or Leon.  And why is any of this important?  It isn’t really, unless you happen to be an information junky with a specialty in polio information or someone whom you love doesn’t have a complete immunity to the three types of polio viruses.

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DUES FOR 2003-  Please take a minute to look at your mailing label  -  on it you’ll see the month and year we received your 2002 dues, i.e., 01/2002 means it was received in January 2002, so your 2003 dues was due in January 2003. If your mailing label has the year first and then the month, i.e., 2002/01 it means that you indicated to us in January 2002 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 (33) 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, Australia, Canada, England, Israel, New Zealand, Portugal, South Africa, Sweden, Taiwan and Wales – 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. 

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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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This, too, came to me through an e-mail friend.  I think the sentiments are what we need to do with our lives…… 

Slow Down Therapy

1. Slow down; you are not responsible for doing it all yourself, right now.

2. Remember a happy, peaceful time in your past. Rest there. Each moment has richness that takes a lifetime to savor.

3. Set your own pace. When someone is pushing you, it's OK to tell them they're pushing.

4. Take nothing for granted: watch water flow,  corn grow, leaves blow, your neighbor mow.

5. Taste your food. It is to delight as well as to nourish.

6. Notice the sun and the moon as they rise and set. They are remarkable for their steady pattern of movement, not their speed.

7. Quit planning how you're going to use what you know, learn, or possess. Gifts just are; be grateful and their purpose will be clear.

8. When you talk with someone, don't think about what you'll say next. Thoughts will spring up naturally if you let them.

9. Talk and play with children. It will bring out the unhurried little person inside you.

10. Create a place in your home...at your

work...in your heart...where you can go for quiet and recollection.  You deserve it.

11. Allow yourself time to be lazy and unproductive. Rest isn't luxury; it's a necessity.

12. Listen to the wind blow. It carries a message of yesterday and tomorrow-and now. NOW counts.

13. Rest on your laurels. They bring comfort whatever their size, age, or condition.

14. Talk slower. Talk less. Don't talk. Communication isn't measured by words.

15. Give yourself permission to be late sometimes. Life is for living, not scheduling.
 
16. Listen to the song of a bird; the complete song. Music and nature are gifts, but only if you are willing to receive them.

17. Take time just to think. Action is good and necessary, but it's fruitful only if we muse, ponder, and mull.

18. Make time for play-the things you like to do. Whatever your age, your inner child needs re-creation.

19. Watch and listen to the night sky. It speaks.

20. Listen to the words you speak, especially in prayer.

21. Learn to stand back and let others take their turn as leaders. There will always be

new opportunities for you to step out in front again.

22.  Divide big jobs into little jobs.  If God took six days to create the universe, can you hope to do any better.

23.  When you find yourself rushing and anxious, stop.  Ask yourself “WHY?”  you are rushing and anxious.  The reasons may improve your self-understanding.

24.  Take time to read the Bible.  Thoughtful reading is enriching reading.

25.  Direct your life with purposeful choices, not with speed and efficiency.  The best musician is one who plays with expression and meaning, not the one who finishes first.

26.  Take a day off alone; make a retreat.  You can learn from monks and hermits without becoming one.

27. Pet a furry friend. You will give and get the gift of now.

28. Work with your hands.  It frees the mind.

29.Take time to wonder.  Without wonder, life is merely existence.

30.  Sit in the dark.  It will teach you to see and hear, taste and smell.

31.  Once in a while, turn down the lights, the volume, the throttle, the invitations.  Less really can be more.

32.  Let go.  Nothing is usually the hardest thing to do – but often it is the best.

33.  Take a walk – but don’t go anywhere.  If you walk just to get somewhere, you sacrifice the walking.

34.  Count your friends.  If you have one, you are lucky.  If you have more, you are blessed.  Bless them in return.

35.  Count your blessings – one at a time and slowly.

                                      Author Unknown

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See you all in September

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Reprinted with the kind permission and help from Phyllis Hartke.

Presentation May 17, 2003, to SFBAPS by Elizabeth Sandel, MD

Medical Director, Kaiser Foundation

Rehabilitation Center, Vallejo, CA &

Clinical Professor, Physical Medicine and

Rehabilitation, UC Davis School of

Medicine, Sacramento, CA

Outline

u       PPS History

u       Definitions

u       Related Conditions

u       PPS Fatigue

u       Differential Diagnosis

u       Treatment

u       Key Points

Natural History of PPS

u       Neurologic Stability (>15years)

u        Begins with plateau of maximum neurologic and functional recovery

u        Lasts indefinitely in about 50% of persons with paralytic polio

u        For 20% to 50%, ends with onset of new weakness and other PPS symptoms

u        Onset of PPS (typically 30-50 years after polio):

u         New weakness

u         Excessive fatigue

u         Muscle and/or joint pain

u         Muscle atrophy

u         Dysphagia

u         Breathing difficulties

u         Cold intolerance

u        Retrospective studies using objective criteria have estimated that PPS will develop in 20% to 40% of APP survivors

Definition of PPS

u         PPS is a neurologic disorder characterized by a cluster of symptoms in individuals who had paralytic polio years earlier

u         Typically, these symptoms occur after a period of functional stability of at least 15 years after APP and include new weakness, fatigue, and pain (of muscles and/or joints)

u         Less commonly, the symptoms include muscle atrophy, breathing and swallowing difficulties, and cold intolerance

u         The new weakness, abnormal muscle fatigability (decreased endurance), and atrophy are most likely caused by a slowly progressive deterioration of motor units

u         Muscle and joint pain are most likely caused by new weakness and/or chronic musculoskeletal “wear and tear”

Components of PPA:

    PPMA vs. Musculoskeletal PPS

u         Post-polio progressive muscular atrophy (PPMA): neurologic manifest-tations

u         New weakness, often accompanied by fatigue, muscle pain, and atrophy

u         Thought to result from degeneration of motor and axonal sprouts and motor neurons

u         Musculoskeletal PPS: orthopedic and neurologic manifestations

u         New joint pain/dysfunction, often accompanied by fatigue, joint tenderness and joint swelling

u         Thought to result from chronic overstress of joints and periarticular structures because of chronic abnormal use of extremities due to residual weakness/joint instability from original poliomyelitis

Diagnostic Criteria for PPS

1.    A prior episode of paralytic polio with residual motor neuron loss (which can be confirmed through a typical patient history, a neurologic examination, and, if needed, an electrodiagnostic exam)

2.    A period of neurologic recovery followed by an interval (usually 15 years or more) of neurologic and functional stability

3.    A gradual or abrupt onset of new weakness and/or a abnormal muscle fatigability (decreased endurance), with or without generalized fatigue, muscle atrophy, and/or pain

4.    Exclusion or medical, orthopedic, and/or neurologic conditions that may be causing the symptoms mentioned in (3)

Differential Diagnosis of PPS

u       Verify the original diagnosis of acute paralytic polio (APP)

u       Evaluate the extent and severity of APP residua

u       Develop a differential diagnosis for each presenting symptom complex

u       Use appropriate diagnostic tests to exclude other potential causative conditions

Developing a Differential Diagnosis   and Plan

u       Define each presenting symptom complex

u       Characteristics

u       Onset/duration

u       Location(s)

u       Activities that increase or decrease symptoms

u       Consider symptoms in relationship to general health, APP residua, and lifestyle

u       Develop diagnostic plan

Fatigue:  Definitions

u       Emotional fatigue

u       Central nervous system fatigue

u       Generalized fatigue (cardiopulmonary system)

u       Neuromuscular fatigue

Basmaijan, Muscles Alive, Williams and Wilkins, 1978

u        Physiologist:  Loss of muscle power over time

u        Neuropsychologist:  Decline in mental abilities

u        Patient: Sense of increased effort (mental and physical) and decreased capacity - - not related to external measures

u        Systemic or subsystemic?

u        16 adjectives used by psychiatrists to signify sadness, 6 were applied by patients to states of fatigue

Fatigue Assessment Instrument

u        29 items (9 item=Fatigue Severity Scale)

u        Global severity scale, triggers of fatigue, situations or activities that may modify fatigue

u        Not onset or duration (current/recent symptoms)

u        Four subscales

u        Severity

u        Situation-specificity

u        Psychological consequences

u        Responds to rest/sleep

u        Dysthymia and MS: fatigue depends on specific circumstances such as temperature, stress, mood

u        Lyme disease/CFS: less situation-specific, more pervasive

u        MS and CSF: more severe than SLE, Lyme disease, dysthymia

u        Can identify triggers/environmental factors/define treatment strategies

Schwartz, J of Psychosom Res,       1993

Fatigue

u        One of the most common complaints in primary card practice, with a reported frequency in excess of 20%

u        Almost all illnesses are capable of causing fatigue

u        Excessive risk of fatigue after viral infections is independent of co-morbid psychiatric illness and admission to the hospital

u        Many medications have this side effect

u       Central diagnostic feature of chronic fatigue syndrome

u       Secondary symptom of major depression, rheumatoid arthritis, multiple sclerosis, PPS

u       Disordered sleep and physical deconditioning compound the problem

Depression and Fatigue

u       Depression/associated psychiatric conditions account for about 33% of cases of persistent fatigue (presenting symptom)

u       Unclear etiology/idiopathic: 25%

u       CFS: 5%

u       New medical disorder: 3%

Symptomatic Fatigue in PPS

Fatigue in PPS:

Systemic Metabolic Disease

Differential Diagnosis

u        Hypothyroidism

u        Cancer

u        Anemia

u        Heart disease

u        Diabetes mellitus

u        Kidney disease

u        Liver disease

Evaluation

u        Thyroid function tests

u        Blood chemistry

u        CBC

u        ECG

u        Chest radiograph

u       Low energy state/mood disturbance

u       Mental fatigue

u       Reduced muscular endurance

u       Delayed recovery after exercise

u       Contributing factors:

u         Depression

u         Deconditioning or overuse

u         Disturbed sleep

u         Muscle fiber transformation

u         77% of polio survivors reported fatigue accompanied by moderate to severe problems with concentration, attention, word-finding, thinking clearly, and memory 

Bruno, et al, Orthopedics, 1991

u       55% of subjects reporting high levels of fatigue had small discrete or multiple punctate areas of hyperintense signal:

u        reticular formation

u        putamen

u        medial leminiscus

u        white matter tracts

Bruno, et al, Arch Phys Med Rehabil, 1994

u       Higher level of depression in PPS group compared with controls and polio w/o PPS

u       No difference on measures of memory, attention, concentration

Hazendon, et al, Neuropsychiatry, Neuropsychology, and Behavioral Neurology, 2000

Fatigue in PPS:

Ventilatory Dysfunction

Differential Diagnosis

u        Sleep Apnea

u&