FLORIDA  EAST  COAST  POST-POLIO  SUPPORT  GROUP   -   Vol. 14   #2

             12 Eclipse Trail  /  Ormond  Beach,  FL  32174  /  386  676-2435

        E-Mail:-  bgold@iag.net   --   Web Site:-  home.iag.net/~bgold/polio.htm

SEPTEMBER / OCTOBER   2006

 

***********************************************

WISHING   EVERYONE

 

A   PEACEFULL LABOR DAY –

A SHANA TOVAH (HAPPY NEW YEAR)

TO ALL OUR JEWISH MEMBERS AND FRIENDS

-  and  -

A CANDY FILLED  HOLLOWEEN

 

****************************************

MEETING  NOTICE

 

September 17th, 2006 --  General rap and talk session.  What’s been

                                           happening with you!!

November 19th, 2006 --   Chris Wysocki of Hanger Orthotics will give a

                                         presentation on orthotics for polios.

January 15th,  2007  --     NEW  YEAR’S  LUNCHEON –

                                          Dr. Richard Tessler of the Volusia Hand Surgery

    Clinic, will give a talk on carpal tunnel syndrome

    and surgery for carpal tunnel.

 

*****************************************


CONTENTS

 

From Barbara                                           

Car Keys Burglar Alert                             

Interview with Dr. Jacquelin Perry           

Five Years Ago – On a Monday Morning                                      

 

****************************************

 

FROM  BARBARA

 

In the last issue of our newsletter I told you that I was having carpal tunnel problems – well…on August 10th I under-went carpal tunnel surgery on my left hand.  Part of this is being typed BEFORE the surgery as I don’t know if I’ll be able to do much typing before the newsletter has to go out the first week in September.  When I’m able to, I will, naturally, give you a full report on how the surgery and the recovery period went.  I do know that I will be wearing a cast on that hand for at least two weeks.  Hopefully, after the two weeks, I’ll be able to resume a fairly normal life – but we will wait and see.

My right hand has become quite bad and I’m sure that will also have to undergo surgery shortly – doctor gave me a shot of cortisone before I left on the cruise..  Guess the 54 years of typing and the 15 years of using a cane have finally had their way with me.  My surgeon, Dr. Richard Tessler will be our guest speaker at our January meeting, which will be a week earlier, January 14th, 2007, as I’m going on a ten day cruise on January 19th.

Now, right before I had the surgery I went on a four-day cruise on the Carnival line with my daughter and her family.  We left out of Jacksonville Seaport.  The ship we were on is one of the older ones in the Carnival line – the Celebration – it was really quite accessible with the exception of their elevators.  I never saw such small elevators in my life.  If I went in with the scooter, only 2 others were able to fit in.  Also, the floor panel buttons were placed where I could not reach higher than #5 and a good many times had to go higher  so, if a family member wasn’t with me, had to ask someone to “please push number…. “ for me.  Quite a bit of the time I would take an elevator down in order to go up, or up in order to go down – this was done just to make sure that I got into an elevator.  Thing is they did have a couple of elevators with a side floor panel button set-up (with the regular floor panel also) – now, if one or two of these were designated for use by the disabled only, it would have made things quite a bit easier.  I did make that suggestion to the Purser and to one or two other employees on the ship. 

          Another problem was the phone in the handicap room.  In my particular room (and I didn’t see any other handicap rooms), the phone was on the wall about 8 feet from the bed.  If there was an emergency and I had to get to the phone, it would present a problem.

          The two pools were not accessible for me. 

          I would not recommend this Carnival ship for a handicapped individual IF they use a wheelchair (either manual or electric) or a scooter.

          I was able to get off the ship at both Freeport and Nassau, BUT, of course, the taxis were not able to take my scooter.

          Going on another cruise in November – Royal Caribbean’s Mariner of the Seas – will, of course report on that one in a later newsletter.

 

****************************************

The following item has been e-mailed to me several times.  You’ve probably gotten it also.  It seems like a wonderful and easy idea to follow.

 

CAR KEYS BURGLER ALERT

 

Here’s a great tip straight from a neighborhood watch coordinator, if you have a car alarm.

 

Keep your car keys on the night stand next to your bed at night. If someone tries to break into your house, or if you hear a suspicious noise outside your house, just press the panic alarm on your car.

 

It will go off from most everywhere inside your house and keep honking until your battery runs down or until you reset it with the button on the key chain. This “alarm” costs you nothing and the results are an effective way to chase away would-be intruders.

 

TRAVELERS: This tactic will work to drive away intruders to your motel room if your room happens to be adjacent to your parked car!

 

****************************************

 

We have our very own special correspondent.  Neena has submitted other articles that we have inserted into our newsletter.  Here is her newest one.  Thank you Neena.

 

INTERVIEW WITH

DR. JACQUELIN PERRY

© By Neena Bhandari

 

For the growing number of polio survivors facing new challenges with the onset of post polio syndrome, world renowned polio specialist Dr. Jacquelin Perry says, “Listen to your body. Feel the aches and pains. Don’t Push. Control your destiny”.

 

Infantile paralysis or polio epidemics struck America from the 1920s to late 1950s afflicting 1.8 million children. The disease killed some and disabled others.

 

“The effects were like spatter paint. If you had a lot of paint, you had a lot of damage, while others were just touched lightly. Polio is a nerve disease that damages or kills anterior horn cells. The survivors were left with a damaged neuro-muscular system”, explains Dr Perry.

 

In 1955, Dr Jonas Salk introduced an inactivated (killed) polio vaccine (IPV) and in 1961 Dr Albert Sabin developed the live attenuated (weakened) oral vaccine (OPV), which halted this childhood plague.

 

Today, polio has been eradicated from the US. Even the vaccine-associated cases have halted since returning to the Salk vaccine, which uses killed virus, for infant immunisation.

 

However, doctors and medical scientists are facing a new challenge of seeking a cause and cure for the post-polio syndrome (PPS).

 

As Dr Perry opines, “Suddenly since 1978, polio survivors started coming back, too many of them feeling pain and weakness."

 

About 60 per cent of the 650,000 polio survivors, who thought they had left their wheelchairs behind, are struck by debilitating legacy of a disease that attacks out of nowhere.

 

Dr Jacquelin Perry, one of the first 10 women to qualify as an orthopaedic surgeon in the United States, has spent a lifetime devoted to researching, teaching and treating polio survivors.

 

Born on May 31, 1918 in Denver, Colorado, and growing up in Downtown Los Angeles as the only child of a clothing-shop clerk, young Jacquelin lived a hotel-like existence constantly moving with her parents.

 

At the tender age of 10, she knew she wanted to be a doctor and began reading every medical book and journal in the Los Angeles library. Along with reading, she participated actively in Girl Scouts and graduated with a degree in Physical Education.

 

Soon she was employed in the army as a physical therapist. “My experience at the Army Centre for Polio and Arthritis in Hot Springs, Arkansas, provided a valuable background for my later year’s focus on rehabilitation”, says Dr Perry.

 

Jacquelin went to medical school and specialised in orthopaedic surgery at the University of California, San Francisco. In 1958, she received the American Board of Orthopaedic Surgery certificate. “During my days, there were only five per cent women in medicine and I was one of the fortunate ones”, remarks Dr Perry.

 

Immediately after her residency in orthopaedic surgery, Dr Perry was invited to join Rancho Los Amigos in the Los Angeles area. “Rancho was the polio respiratory centre for Los Angeles County and the surrounding area.  At this juncture polio was at its peak and all patients had acute poliomyelitis and about half had respiratory paralysis”.

 

At Rancho, the medical staff was exploring surgical ways to provide stability for patients who had paralysis of the neck, spine or both and for whom trunk-bracing was inadequate.

 

Dr Perry extended the use of spine surgery to such patients and along with Dr Vernon Nickel developed the `halo device’, which allows three-dimensional control for the head and is routinely used today in spinal cord injury rehabilitation.

 

She explains, “Trunk braces are used for spines and separate braces for the neck. We used halos for both neck and thoracic spines”.

 

In addition to the development of unique surgeries, she believes that a major contribution of Rancho during the polio epidemics was the team (nurses, therapists, physicians and patients) concept of patient care. She says, “In rehabilitation, you don't make people normal. You make them better”.

 

In her opinion as the new breed of US doctors have not seen fresh polio cases, PPS is under-treated by the general medical community. When the opportunity arises for her to speak at worldwide conferences or lectures, Dr. Perry uses the occasion to educate other medical professionals about PPS.

 

She says, “Doctors must listen to their patients. I attend polio conferences like the one organised by International Polio Network in St Louis as it provides a perfect platform to learn from people living around the world with the disease”.

 

"Don't push the system and control loss of function by avoiding overuse of muscles. Polio survivors who overuse muscles will lose strength and you cannot fight back to regain it”, cautions Dr Perry.

 

She believes not everyone gets PPS. One can control loss of muscle function by making lifestyle changes, modifying and pacing activities.

 

Her general activity guideline is that a polio survivor can do anything as long as it causes no pain, for pain is a sign of injury and overuse; so just don't let it happen. Secondly, no fatigue that lasts longer than 10 minutes.

 

Internationally renowned as the Grand Dame of Gait Analysis, she has written over 300 articles, book chapters, abstracts and editorials on polio, gait, spine surgery, stroke, rehabilitation, muscle, function and sports medicine. Her book Gait Analysis: Normal and Pathological Gait, is referred as a textbook by the medical community. She has also authored a number of instructional course lectures for the American Academy of Orthopaedic Surgeons.

She has to her credit several honours and awards like the President of California Association of Rehabilitation Facilities Award 1984; Joseph F. Dowling Distinguished Award 1988; Physician of the Year 1994 Award by California Governor’s Commission; Edward W. Lowman Award 1999 by American Congress of Rehabilitation Medicine, Orlando.

 

In all humility Dr Perry says, “My desire to make my own decisions and my willingness to take the responsibility for the consequences has probably been the key to my success. I don’t think I have missed out on anything. Not being married or having children. I have always wanted to help others”.

 

Her dedication to work even at 87, leaves one with no doubt. She continues to see polio survivors in a clinic adjacent to a building named after her - the Jacqueline Perry Neuro-Trauma Institute and Rehabilitation Centre.

 

She believes that post-polio syndrome is under-treated by the general medical community, the Rancho Post-Polio Clinic remains open and she continues as chief of Post-Polio Services. Dr. Perry also volunteers as medical consultant for the Rancho Pathokinesiology Lab.

 

She has also trained numerous students and colleagues over the years in a variety of ways, especially as Professor at the Departments of Orthopaedics and Biokinessiology and Physical Therapy in University of Southern California School of Medicine.

 

On being asked about her views on aging by International Polio Network’s Director Joan Headley, Dr Perry said, “Aging is not a problem. It's natural, but the functional restraints of Parkinsonism has made life more difficult for me.”

 

There is nothing to dampen her insurmountable spirit as Dr Perry actively pursues her hobbies and interests taking the advice she has so often given to polio survivors. “Modify your lifestyle, and implement energy conservation techniques in order to accommodate your new reality”.

The end.

 

****************************************

 

The following essay is by one of our own members, Jack Briggs.  Much thanks, Jack.

 

FIVE YEARS AGO –

ON A MONDAY MORNING

 

On Monday we e-mailed jokes.

** On Tuesday we did not.

On Monday we thought we were secure.

** On Tuesday we learned better.

On Monday we were talking about heroes as being athletes.

** On Tuesday we relearned who our heroes are.

On Monday we were irritated that our rebate checks had not arrived.

** On Tuesday we gave money away to people we had never met.

On Monday there were people fighting against prayer in schools.

** On Tuesday you would have been hard pressed to find a school where someone was not praying.

On Monday people argued with their kids about cleaning up their rooms.

** On Tuesday the same people couldn’t get home fast enough to hug their kids.

On Monday people were upset that they had to wait 6 minutes in a super-market line.

** On Tuesday people didn’t care about waiting up to six hours to give blood for the dying.

On Monday there were people trying to separate each other by race, sex, color and creed.

** On Tuesday they were all holding hands.

On Monday we were men or women, black or white, old or young, rich or poor, gay or straight, Christian or non-Christian.

** On Tuesday we were ALL Americans.

On Monday politicians argued about budget surpluses.

** On Tuesday, grief stricken, they all sang ‘God Bless America’.

On Monday the President was going to Florida to read to children.

** On Tuesday he returned to Washington to protect our children.

On Monday we had families.

** On Tuesday we had orphans.

On Monday people went to work as usual.

** On Tuesday they died.

On Monday people were fighting the Ten Commandments on government property.

** On Tuesday the same people all said ‘God help us all’ while thinking ‘Thou shalt not kill!’

 

It is sadly ironic how it takes horrific events to place things into perspective.  But it Has!!

 

The lessons learned the week of September 9, 2001, the things we have taken for granted, the things that have been forgotten or overlooked, hopefully will NEVER BE FORGOTTEN AGAIN…..

 

FECPPSG Editor’s Note:-  Jack just sent this to me and I thought it was most apropos for this issue.  Once again –

Thanks, Jack…

 

****************************************

 

FECPPSG Editor’s Note:-  Sorry for the shorter newsletter this issue, but in addition to my carpal tunnel surgery my daughter, Bari Lynn, had some serious surgery and, as of today, August 30th, she is still in CCU at a hospital in Jacksonville.  I’ve had to have friends and relatives drive me there and back as I was not able to drive the car until today.  What a horror – having a sick child (even though they are an adult) and not being able to be there constantly.

 

 

****************************************

                       

 




FLORIDA  EAST  COAST  POST-POLIO  SUPPORT  GROUP

12  Eclipse  Trail  /  Ormond  BeachFL  32174

 386-676-2435  /  e-mail  address:  bgold@iag.net

 

DATE:                Sunday, September 17th, 2006

TIME:                 1:00 – 4:00 PM

PLACE:              Red Lobster Restaurant

                            International Speedway Boulevard

                            Right off I-95 – Exit 261– Daytona Beach, FL

                            (head EAST for about 1/4 mile)

  

PROGRAM:-      General Rap and Talk Session.  Tell us what’s been

                             Happening with you.

 

                                                                       

Cost of the Luncheon is $10.00 all inclusive.   As usual we will have a choice of several different menu items.

 

Please send in your reservation tear sheet and check

no later than September 14th, 2006

 

Any questions call Barbara at 386-676-2435.

 

==========================================================================

 

R E S E R V A T I O N   F O R M

September 17th, 2006 Luncheon Meeting

  

Name:- _______________________________  Phone No.:- _________________

 

Number of People Coming:- _________ Number in Wheelchair(s):-  ___________

 

Amount of Check Enclosed:-  ________________  @ $10.00 per person

 

Make check payable to and mail same to:

 

FLORIDA EAST COAST POST-POLIO SUPPORT GROUP

12 Eclipse Trail  --  Ormond Beach, FL  32174

 

09/2006

 

~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~


FLORIDA EAST COAST POST-POLIO SUPPORT GROUP

12 ECLIPSE TRAIL

ORMOND BEACH, FL 32174-4936

386  676-2435            e-mail:- bgold@iag.net

 

       

DATE:                Sunday, September 17th, 2006

TIME:                 1:00 – 4:00 PM

PLACE:              Red Lobster Restaurant

                             International Speedway Boulevard

                            Right off I-95 – Exit 261– Daytona Beach, FL

                             (head EAST for about 1/4 mile)

 

PROGRAM:-       Just a general rap and talk session.  Let’s hear what’s

                              been happening with you – what’s been bothering you –

                              whatever….

 

 

For further information call:-  Barbara  386-676-2435

 

=====================================================================

2006 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:-_____________________________________

 

Support Group I belong to:- ____________________________________________

09/2006