Post Polio Notes

December 1999

San Diego, CA

A Note from
Mary Clare Schlesinger

As 1999 comes to a close, I’d like to thank you for your support, contributions and donations.  I especially appreciate your kindness and consideration in sharing information.
              "Be there for each other."


Dr. Susan Perlman to speak in San Diego

On Sunday, June 18, 2000, Dr. Perlman associate clinical professor of neurology, a leading expert on PPS, and director of the Post-Polio Clinic at UC Los Angeles will talk in San Diego.  Details will be published later.  Keep the date open!


San Marcos PPS Meeting
      October 2, 1999

Fifteen PPS people attended the October meeting.  The group discussed the upcoming conference of the March of Dimes in May 2000 and addressed these needs:  educate the medical profession and include PPS in nursing curriculum, care of chronically ill patients, expedite approval of new drugs (NGF), research on neuromuscular disease that prolongs nerve cell life, create more awareness among polio survivors who don’t know about PPS and make assistive equipment available to more PPS patients.

Rose Wiant shared her positive experiences with Dr. Lara Le, an internist at the Graybill Medical Group located at 335 E. 2nd Ave. Escondido (760) 796-6700.  Dr. Larry Presant, an internist at the Center for Health Care located at 17190 Bernardo Center Drive Rancho Bernardo (858) 675-3100 was also recommended to the group.

Anita Adsit shared her volunteer work with 2 women who have Alzheimer’s.  Anita finds that focusing outwards and staying busy helps her to feel well.  Marilyn Salisbury has a service dog in training and works in cooperation with CoPilots for Independence.

San Diego PSG Meeting
    November 11
, 1999

Nick and Virginia Nichols greeted 24 people at the La Jolla meeting.  Judy Sander asked 5 new members to share their PPS history.  Kay Meers had polio in ’56 and was diagnosed with PPS in ’91.  Kay’s service dog has been helping her overcome new PPS challenges in the last 7 years.  Henrietta Wahl had polio at 18 months in NYC, while in the hospital for whooping cough.  Richard Willebonn had polio in NYC in ’55 and developed PPS symptoms in ’87.  Steve Goldman also had polio in NYC at 4 years old and is now semi-retired.

Dr. Jim Donovan reported the National Institutes of Health (NIH) in Bethseda, MD is accepting PPS patients for participation in clinical research.  They will provide medical, surgical or other hospital care.  For information contact Dr. Marinos Dalakas of the NIH Institute of Neurological Disorders and Stroke (301) 496-0079.

Dr. Donovan related these PPS issues to the Steering Committee for the March of Dimes International Conference on PPS, May, 2000: 

1) PPS should be included in medical school and nursing curriculum.

2) The World Health Organization should address polio and its future PPS complications. 

3) More assistive devices should be available for independence. 

4) Pursue more research with neural stem cells.

5) More active involvement from Fred Gage at the Salk Institute with his research of neurotrophin 3 that stimulates growth in damaged nerves, from John O’Brien of UCSD with his research of neurodys and lipidoses and from Mark Tuszynski, also from UCSD with his research on spinal cord injuries. 

6) Research from Washington University, St Louis on a protein molecule (SLIT) that directs developing nerve cells and transplants neurons to the site that needs them.

 

Persistence of Polio Virus
Comments by Dr. Susan Perlman

The St. Johns PPS E-mail list recently had an abstract of a study that found evidence of poliovirus in PPS survivors

J Neurol 1999 Jun; 246(6) 472-6,
PostPolio Syndrome: Poliovirus persistence is involved in the pathogenesis, Julien, J, et al,
Dept Neurology, CHU Bordeuax,
Pessac France. 

We asked Dr. Perlman about the significance of this finding. 

Dr. Perlman replied:

With evidence for inflammation in spinal cord and muscle of polio survivors (with or without new symptoms), there has been an effort by many labs here and in Europe to determine whether the poliovirus might still be present and contributing to the pathogenesis of PPMA.  The American studies found evidence of an inflammatory/immune reaction, but no persistant virus (RNA viruses like polio usually don't persist in the nervous system, as opposed to DNA viruses like shingles which do).  The French lab has worked with the increasingly sophisticated technology in RNA detection and has had two or three articles where they feel they have found evidence of viral persistance.  Across the Rhine (I think) a Belgian research lab has not found such evidence.  So, it remains a possibility, but not proven.  There are as yet no anti-viral agents that work on RNA viruses.

Dr. Susan Perlman
Neurological Services
300 UCLA Medical Plaza  Suite B200
Los Angeles, CA  90095
(310) 794-1195

E-Mail: sperlman@ucla.edu

More Research News
      
  from Herb Boynton

Tracking Post-Polio Syndrome by Warren Froelich appeared in the Fall ’99 issue of Salk Institute Signals  “In a lab area once occupied by polio vaccine pioneer Jonas Salk, researchers are now tackling some unfinished business: post-polio syndrome.  ‘The syndrome’s difficult to ignore, and it shouldn’t be ignored.’ said Assistant Professor Samuel L. Pfaff, a developmental neurobiologist at the Salk Institute.  Though medical science can offer little to these patients for the moment, Pfaff talks enthusiastically about the possibilities for the future, particularly with new advances in gene therapy that one day may direct immature stem cells into becoming mature motor neurons.”

Thanks, Herb, for keeping us informed.
What Can You Do If You Get the Flu?

From Dr. Robert Sarnoff, pulmonologist, Scripps Clinic, Torrey Pines 

The FDA approved Tamiflu (osltamivir) in October, the second major flu drug to be endorsed since Relenza (zanamivir) last summer.  Tamiflu comes in capsule form while Relenza is a powdered inhaler.  Taken within 48 hours of getting sick, Tamiflu and Relenza can cut the duration of flu symptoms by one and a half days and also cut in half the risk of complications such as bronchitis and sinusitis.  A new study finds that Tamiflu taken for six weeks before any symptoms, may help prevent flu.  However, the best defense is a flu shot.

Note:  This is not intended as medical advice.  Consult your doctor.


Thanks To

Rhoda Damsky, Irene English, Alice Gowing, Shelah Michael, Marian Retzlaff, Joyce Sapp, Fred Space, Betty Svare and Rose Wiant  for supporting the printing and distribution of this newsletter.

 

It Couldn’t Be Done
   
by Edgar A. Guest
    (From Franklin Smith)

Somebody said that it couldn’t be done,
  
But he with a chuckle replied
That “maybe it couldn’t,” but he would be one
  
Who wouldn’t say so till he’d tried.
So he buckled right in with the trace of a grin
  
On his face.  If he worried he hid it.
He started to sing as he tackled the thing
  
That couldn’t be done, and he did it.

Somebody scoffed:  “Oh, you’ll never do that;
  
At least no one ever has done it”;
But he took off his coat and he took off his hat,
  
And the first thing we knew he’s begun it.
With a lift of his chin and a bit of a grin,
  
Without any doubting or quiddit,
He started to sing as he tackled the thing
  
That couldn’t be done, and he did it.

There are thousands to tell you it cannot be done,
  
There are thousands to prophesy failure:
There are thousands to point out to you, one by one,
  
The dangers that wait to assail you.
But just buckle in with a bit of a grin,
  
Just take off your coat and go to it;
Just start to sing as you tackle the thing
  
That “cannot be done,” and you’ll do it.

Thanks, Franklin!

Second Annual PPS Picnic
    Oct. 17, 1999
   
More Fun in the Sun!

Crown Point in Mission Bay provided another perfect picnic place for 20 PPS families and their pets.  Sammie Domich, Lenawee Garcia and Andrea Hollenbeck organized the event.  Rod Garcia put his culinary skills to use as the chef for the occasion.  The warm bright day on the bay added to the comfort of lasting friendships.  Many people enjoyed the picnic till 7PM. 

Thanks Andrea, Lenawee, Rod and Sammie!

Falling                 
    by Mary Clare Schlesinger

Polio left its mark on me when I was 3 years old.  However, I found a graceful way to live with its disability, enjoying my wonderful husband, Steve, and my beautiful daughter, Rebecca.  Polio came back into my life, unannounced and unexpected, with PPS.

One spring afternoon, my daughter and I were standing at the lingerie counter in Nordstrom’s when PPS made another official entrance in a very embarrassing moment.  Without any warning, my knee buckled and I fell flat on my back.  The resounding echo of my head bouncing on the marble floor resembled a bowling ball that reverberated throughout the store!  Anxious personnel rushed to my side with hurried and hushed voices in an attempt to conceal one of my most feared words, “paramedics.”

“No!  No!,” I blurted out, “Don’t move me!”  With thankful respect, the Nordstom’s saleswomen roped off the space around me till I felt like someone in a police crime scene, complete with “gawkers!”  (If only I could be invisible.)  Suddenly, I thought of my old polio survival technique….maintain your composure and forge ahead with dignity when new challenges present themselves!

After forty-five long, uncomfortable and awkward minutes, I regained my strength, pulled myself into a wheelchair and Rebecca whisked me away to meet another PPS challenge:  an urgent care doctor who reported my most embarrassing moment to the DMV

Rave Review after Falling

Virginia Burwell gives a rave review to Palomar Hospital Rehab Center in Escondido after her October fall when she cracked her hip and upper femur.  After surgery she recovered with rehabilitation from the staff that accommodated her special PPS needs. 
Virginia exercised her leadership skills to educate everyone about PPS. 
Our best wishes for a continued recovery.

  

March of Dimes Wants to Hear from You

The March of Dimes committee invites polio survivors to give their feedback in order to identify the best practices in diagnosis, treatment and care of PPS.  The International Conference on PPS will be held May 19-20, 2000 in collaboration with the Roosevelt Warm Springs Institute for Rehabilitation in Warm Springs, GA.  The purpose is to raise awareness of PPS for better clinical management, to initiate networks and partnerships among relevant organizations, practitioners and to address research priorities.

The committee is interested in you. 
Send letters and written materials by Dec. 31, 1999 to:

Joan Roe, March of Dimes, 1275 Mamaroneck Ave., White Plains, NY 10605

Or E-Mail to:  jroe@modimes.org

For more information contact Joan Headley, the Executive Director of Gazette International Networking Institute (GINI) at:
            (314) 534-0475

Or E-Mail to:  gini_intl@msn.com

Letter to the March of Dimes

Dear Ms. Roe:

The March of Dimes is in a unique position to raise awareness of PPS in both the medical community and general public.  The problem with the medical community failing to consider PPS as a condition that can be treated was made evident recently by one of the most prestigious medical institutions in the world, the Mayo Clinic.  Attached is a page from their web site that shows their dismissive attitude http://www.mayohealth.org/mayo/askphys/
qa990820.htm
.  Also attached is a letter I wrote in response (see Post Polio Notes October 1999 at the web site).  The MOD can use its influence to educate the medical community that the symptoms of PPS can be alleviated and that new drugs and treatments may impede the muscle degeneration.

Second, the MOD can educate polio survivors that are experiencing PPS but do not yet realize the cause of their symptoms.  Once polio survivors know the cause of their new symptoms they can help educate their doctors to the treatment options available.  The MOD is in a position to influence polio suriviors that are prominent in the public eye (entertainers, politicians, athletes, etc.).  http://www.geocities.com/Heartland/Ranch/
5212/poliopeople.html
.  They could serve as honorary members of a PPS Educational organization and appear in public service announcements telling the world about PPS.

Sincerely,
Steve Schlesinger


Stories that Shaped the Century
    Los Angeles Times
    November 8, 1999  B4

From Barbara MacKinnon

The LA Times noted the historical significance of the Salk vaccine and reprinted two articles from April 14,1955:  First Child in L.A. Gets Polio Vaccine and Eisenhower Acts to Share Vaccine Data with the World. 

Kit Rachlis writes in the Nov.8,’99 LA Times, A Vicious Epidemic Is Overcome by Vaccine.  Kit’s mother had polio while she was pregnant and today has PPS.  Kit writes, “Salk did not just prevent a disease, he exorcised a ghost that had been haunting the world for more than 40 years.  Polio generated a terror—a sense of dread that so permeated society that it became part of the air people breathed—for which AIDS provided the only modern equivalent.”

“Despite all the breakthroughs, it turns out that polio had one more terrible surprise left…post polio syndrome.  Having regained the use of their bodies, having every reason to believe the illness had been defeated, polio survivors face the prospect that they have to fight the battle all over again.  But this time the odds are not in their favor.  This time, there is no Dr. Salk, no vaccine, no physical therapy on the horizon.”

Thanks, Barbara.

 

Dr. Lauro Halstead to Speak in Phoenix, Arizona

Dr. Halstead of the National Rehabilitation Hospital at Georgetown University School of Medicine, Washington DC is one of the leading authorities on Post Polio Syndrome and a respected international lecturer.  He has been published in leading journals of medicine and rehabilitation.  Dr. Halstead will speak at a meeting of the Phoenix PPS Support Group, Polio Echo on Saturday, March 18, 2000, which will be open to the public.  He makes few personal appearances, so this is a special opportunity.  More details will be available later.


Second Annual Holiday Party
    
December 9, 1999  12 Noon to 2 PM

Join the holiday magic with the San Diego PSG at the La Jolla Village Square Community Room.  The afternoon will be filled with holiday festivities for your enjoyment and delicious treats for the occasion.  Judy Sander will feature a white elephant gift exchange while Rick and Sandy Van Der Linden will provide music.  For more information contact Andrea Hollenbeck  (858) 488-4582

Music for the Holidays

Marty Bloom organizes musical performances by the San Diego Master Chorale.
Home for the Holidays
Dec. 10, 11 at 8 PM,

Dec. 12 at 2 PM 
Copley Symphony Hall     (619) 235-0804

Handel:  Messiah
Dec. 13 at 8 PM 
         California Center for the Arts. 
Dec. 17 at 8 PM  St Paul’s Cathedral, SD.  Dec. 18 at 7 PM  St James by the Sea, La Jolla.  Dec. 19 at 3 PM 
         Church of the Nativity, Rancho Santa Fe
                  (888) 848-4326

For more information E-Mail: mbloom@fatcity.com

Thanks, Marty!
Upcoming Events

December 4   North County PPSG
General Meeting 3 to 5 PM
California Mobility
727 W. San Marcos Blvd.
San Marcos
(760) 471-4545

December 9  Holiday Party
La Jolla Village Square
Community Room  12:00 to 2 PM
Andrea Hollenbeck  (858) 488-4582

December 18-and January 29, 2000
East County PPSG
General Meeting 2PM
El Cajon Library
201 East Douglas
For dates call:
Sammie Domich (619) 464-5364

January 13, 2000 
San Diego Polio Survivors Group
General Meeting 10 AM to Noon
La Jolla Village Square
Judy Sander (619) 586-4011
http://hometown.aol.com/jsan333/club/index.htm

Escondido area and small groups:
Mary Clare Schlesinger


Visit our Web Page!

http://sandiego_polio.tripod.com

With recent photos and back issues of Post Polio Notes! Directions and maps to the North County meeting in San Marcos and the San Diego meeting in La Jolla!
And links to more PPS sites!


Post Polio Notes is published by Mary Clare Schlesinger with news of Post Polio Activities in the San Diego area and general information on Post Polio Syndrome.

Your written contributions are welcome, please send them to:

Mary Clare Schlesinger
25161 Jesmond Dene Rd.
Escondido, CA 92026

Mary Clare Schlesinger

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