San Diego, CA

Post Polio Notes is a means for people to connect with each other.  Our support is vital to overcoming daily obstacles, both emotionally and physically, since the after effects of polio present an ongoing challenge
              "Be there for each other."

San Marcos PPS Meeting
      August 6, 1999

The summer meeting was attended by 15 people.  Two new women joined the group and shared their polio history, along with their onset of PPS symptoms.  Marian Ritzlaff had polio at 18mos. in 1934.  PPS forced her to use a scooter on a daily basis when she broke her leg a year ago.  Joyce Sapp had polio in 1956 at 31yrs.  No one else in her family came down with the virus.  She first noticed signs of PPS fatigue 3yrs. ago with back pain.  Bob Gorman talked about his swallowing problems and the possibility of vocal cord surgery.  Harriet Nisenbaum discussed the personal difficulties of accepting her need for a caregiver when she had to call 911 four times in one month.  Fred Space’s new wife, Peggy, talked about her son, Joel Duane, who was a quadriplegic.  Joel was an advocate for disabled rights and received a citation from the state legislature.  The problems of driving with a scooter and a lift were discussed.  The Ability Center in Kearney Mesa displays vans with special adaptations.  The benefit of assist handles throughout your home were also discussed.  General health issues, especially weight gain, were discussed.  In addition, the group shared their personal experiences with Dr. Susan Perlman and Dr. Jacqualin Perry, two PPS experts.

San Diego PSG Meeting
    September 9, 1999

Virginia Nichols greeted 32 people to the PPS meeting.  Judy Sander made announcements.  She invited the 5 new members to share their PPS history.  The group discussed their experiences in an open forum:  Doctors pose a common problem for PPS survivors by prescribing the wrong exercises, medicines, etc.  Accessible handicapped parking is necessary with a handicapped placard or license plate.  People were cautioned not to park in the blue hatch lines.  A parking ticket can result with a hefty fine of $340.  Appearing in traffic court to plead your individual case can possibly dismiss the fine.  Sammie Domich and Lenawee Garcia volunteered to organize the Annual PPS Picnic at Crown Point in Mission Bay.  The Torrey Pines Kiwanis Club is offering a free ski trip.  (Marilyn Salisbury has applications)  A topic for the Nov. meeting was suggested: “It Works for Me.”

Donations Wanted

Bob Gorman helps polio survivors in Mexicali by donating used assistive devices, such as wheelchairs, crutches, etc. to those in need.  To donate contact:  Bob (760) 726-0677

She will return to the Jan. and/or March meeting(s)

Theresa D. Crawford, Psy.D.
Licensed Clinical Psychologist  #PSY9470
1030 Pearl St., Suite 5
La Jolla, CA  92037
(858) 459-0345  24 Hr. Ans. Serv.

http://members.aol.com/tcdoc4us

Special thanks to Lenawee Garcia for her notes of the meeting!

Discussions with Dr.Perlman
August 25, 1999

Prescription Drugs

Neurontin is an anti-convulsant drug that is also used for pain caused by damaged nerves, including PPS and peripheral neuropathy.  Sleepiness is a common side effect of neurontin.

Rilutek is used for ALS to reduce glutamate levels. In ALS, toxic levels of glutamate kill nerve cells. Rilutek protects nerve cells from excess glutamate levels.  Rilutek slows the rate of nerve cell death and slows progression of symptoms.  Clinical trials concluded that rilutek protects the nerve sheaths.  Trials are in progress to determine its benefits for PPS.

Myotrophin (Insulin-like Nerve Growth Factor) has been used in clinical trials with ALS patients.  With ALS it has shown to slow the progression of the disease by 25%.  Similar results are hoped for with PPS.  The FDA is still holding up the approval of myotrophin.  However, Dr.Perlman will offer it to her patients when it is available.

Over the Counter Supplements

SAMe (S-adenosylmethionine) is a compound made by every cell in the body, a methyl donor and important in the production of neuro-transmitters in the brain.  Some PPS patients benefit from SAMe’s anti-inflammatory and anti-depressant qualities

Vitamin B12 is required to protect against peripheral neurological diseases.  High doses of Vit.B12 are needed to regenerate neurons, as well as the myelin sheath that protects axons and peripheral nerves.  Ultra-high doses can be of clinical use for PPS patients with peripheral neuropathies. There are no toxic effects from too much Vitamin B12.

Coenzyme Q10 is produced by the body and is found in many dietary sources.  Some studies reported it to improve cardiac muscle function following congestive heart failure.  Some PPS patients have found CoQ to improve muscle function and reduce fatigue.

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

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

E-Mail: sperlman@ucla.edu

Who’s Who 

Mayo Clinic Ask the Physician on PPS
      Aug 20, 1999

Q. My mother had polio in the late 1940s. She now has what is called Post Polio Syndrome. Are there any studies being made in the area at the Mayo Clinic? Ralph / Fla.

 A. The term Post-Polio Syndrome is used for a group of symptoms and signs that occur in about one-fourth of people with a past, documented history of poliomyelitis.

The main features of the syndrome include:

·       Past history of polio, usually at age 10 years or older and usually with severe symptoms.

·       A long interval of some 30 years before the late manifestations.

·       Gradual onset of weakness or increase in weakness over a period of months or longer that may involve muscles not involved with the original illness.

·       Weakness or tired muscles later in the day or after mild exercise.

·       Onset usually not before age 30 to 40.

The exact cause of the problem is not known. One research focus is on nerves in the spinal cord that may have been damaged by the original infection. There is no specific treatment, but occupational and physical therapy may provide ways to decrease the symptoms by recommending forms of exercise (such as swimming) that can be less strenuous and avoid overuse of the involved muscles.

Although it will not benefit those who currently suffer from post-polio syndrome, effective immunization that prevents acute poliomyelitis ultimately should prevent this troublesome late complication.

There are currently no treatment trials underway at Mayo Clinic involving Post-Polio Syndrome.

Steve Schlesinger responds:

put the percent of former polio patients much higher than the 25% that you state.  Most put it at 50% or higher.  Some observers think most polio survivors will experience PPS.

PPS patients have a hard time finding physicians who are interested in PPS.  Many will attribute the symptoms to aging or being psychosomatic.  The attitude, that because effective polio vaccines exist, PPS will go away by itself, fosters the lack of interest.  While polio is extinct in the Western hemisphere and only exists in limited areas in the rest of the world, many millions of polio survivors worldwide will experience PPS.  Drug therapy that protects further neuron damage could greatly reduce the progress of PPS.

PPS can affect people who had polio at any age and with any level of severity.  Many people have come to my wife’s support groups who had mild cases of polio.  While they show no outward signs of having had polio they are experiencing unexpected pain and weakness.

You fail to mention more serious manifestations of PPS which include weakness of chest muscles that cause secondary pulmonary problems.  Also weakness of neck muscles which cause swallowing problems.

You fail to mention several drugs that have proved to bring some relief from muscle pain.  These include mestinon, neurontin, amantidine and carnitor.  Also nerve growth factor used in trials with ALS patients may prove effective in slowing the progress of PPS.  The FDA is holding up approval of myotrophin while ALS patients die and PPS patients get weaker.

While PPS isn’t fatal of itself and the progression is much slower than ALS, there are more people with PPS than ALS.  Treatments which help PPS may also help ALS.  More interest in PPS will help patients with other neuromuscular diseases.

More Research News
        from Herb Boynton

The September issue of Scientific American has an excerpt from Repairing the Damaged Spinal Cord by John W. McDonald and the Research Consortium of the Christopher Reeve Paralysis Foundation.  “The 1990s have seen impressive advances in understanding of spinal cord injury and the controls on neuronal growth.  Scientists isolated nerve growth factor (NGF), a neurotrophic factor that supports the survival and development of the peripheral nervous system.  This factor turned out to be part of a family of proteins that both enhance neuronal survival and favor the outgrowth of axons. Some treatments for spinal cord injuries will combat secondary injury, some will encourage axonal regrowth or remyelination, and some will replace lost cells.  Independence in daily activities will depend on reconstruction of damaged tissue through the regrowth of injured axons and the reconnection of disrupted pathways.  The focus of medical care is expanding, as treatments designed to repair the damaged cord and restore lost function, are becoming increasingly plausible.”

Thanks, Herb, for keeping us informed.

Laura Hiltz’s Recovery

My daughter demanded a lumbar puncture, since she had a feeling it was more than the flu.  The result was a diagnosis of meningococcal meningitis.

When I came out of the coma the ICU nurses explained that I was in the hospital.  I had been treated vigorously with antibiotics and anti-seizure medicine.  I had been on a kind of “rock and roll” bed to prevent pneumonia and had tubes, lines and catheters that would be removed soon.  For the rest, their remark was “You don’t want to know!”

Later I obtained bits and pieces of information from friends who had become “relatives” in order to get into ICU.  The hospital called my daughter in the middle of the night, Feb.19, on the eve of my 59^th birthday to tell her that I wasn’t going to make it.  Thanks to all the prayers and support, I did make it!

After a few days I was moved upstairs to neuro-rehab with physical, acupuncture and psychological therapists working with me everyday.  I had to learn to walk again, do everyday chores and solve problems.  My recovery was quite speedy and I was discharged from the hospital March 11.  Of course I had to take the rest of the semester off and continue physical therapy on an out-patient basis.  I used a cane, mainly for balance.  I know I could’ve ended up deaf, blind or brain damaged.

I was overwhelmed by the support I received from friends who sent cards, flowers and obviously, prayers.  I returned to school in the fall but found it tiring and physically challenging teaching art classes.  I never thought age 60 would look so good!  In the spring, I took my 100 days at half pay and retired June 17, 1993.

When I had bulbar polio at age 13 my parents were told that I had one chance in  hundred to make it.  Having meningitis was almost like having polio again but I have defied death twice!  I am very thankful for my daughter and the terrific ICU nurses who brought me through.  My son and I have also become a lot closer.

strings

Courage  
          -from Shelah Micheal

or: E-mail Sschlesinger@home.com

October 2   North County PPSG
General Meeting 3 to 5 PM
California Mobility
727 W. San Marcos Blvd.
San Marcos
(760) 471-4545

October 17 --Second Annual PPS Picnic
Mission Bay at Crown Point  10AM
Sammie Domich  (619) 464-5364
Lenawee Garcia  (619) 262-6066

October 30 East County PPSG
General Meeting 2PM
El Cajon Library
201 East Douglas
For dates call:
Sammie Domich (619) 464-5364
Betty Svare (619) 465-8170

Riverside County Self Help Group
For dates call:
Rick Van Der Linden
(909) 929-8208

Escondido area and small groups:
Mary Clare Schlesinger

With recent copies 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!