PPS Interview With Mary Clare Schlesinger

By Mark Sauer, The San Diego Union-Tribune

(Conducted via E-Mail)

October 4, 2000

 

Mark Sauer (S):
Your essay, "A Novel Approach to Breathing," provides a wealth of background (far more than I can use, frankly) about your experience with the disease, so I won't ask you to repeat it here.

 

S:       But how much of your life is consumed by PPS?

 

Mary Clare (MC):
Every moment of every day.  Many polio survivors recovered completely from the infection and experienced 30 to 40 years of a normal life before PPS arrived.  I did not enjoy the benefit of a full recovery from polio.  I was permanently affected by polio when I was 3 years old.  Since then, I’ve been adjusting, compensating and challenged to find a fulfilling life with polio.  When I wake up each morning the first thing I do is to find the mental energy to get myself up and meet the day.  With the help of significant people in my life, I’ve managed to have the pleasure of “plateaus” with polio.  However, the “plateaus” were usually short lived until the next polio related problem developed.  In the last 15 years I have had a continuous loss of breath, strength and mobility.  The only way for me to deal with the constant loss from PPS is to remain focused on hope and the positive energy of life.  It’s a daily challenge…both mental and physical.

 

 

S:       Is there an analogy for how this disease has entangled your life that would connect with readers?

 

MC:   I’m entangled in a mass of ropes at the bottom of a big box.  I free myself from the ropes and start climbing the walls of the box.  Every time I reach the top, I fall back down to the bottom into the mass of ropes.  (if this is too extreme, here is a less intense version)

 

I’m at the bottom of a big box.  I start climbing the box.  Every time I reach the top, I fall back down to the bottom.

 

 

S:       How many people locally are affected by PPS, in your estimation?

 

MC:   Estimates of the number of polio survivors in the US range from 600,000 to 2,000,000.  The estimate of the per cent of polio survivors who will experience PPS ranges from 25% to 75%.  This gives a range of those affected by PPS from 150,000 to 1,500,000.

Current population of the US is about 275 million (US Census Bureau estimate).  This means from 0.055% to 0.55% of the US population is affected by PPS.  San Diego County population is about 3 million, so the number affected by PPS in San Diego County is somewhere in the range of 1,600 to 16,000.  

The total number of people who have contacted the SD County support groups is less than 300.  This means there are still many people who may be experiencing PPS but not know why they are having new problems.  In most cases their doctors don’t know either.

 

S:       How do they cope?

 

MC:   There is a wide range.  Some people have no outward sign of problems, but have PPS symptoms that have a small effect on their lives.  They can still do everything they used to do, but not as much.  On the other extreme are those who are now in wheelchairs, and using respirators to breathe.

Some people seek medical help and have a doctor who, if not knowledgeable about PPS, is at least cooperative.  (Many doctors do not know about PPS and dismiss PPS as just “aging”).  Others find ways to help themselves through support groups and/or the internet

 

S:       Do those grappling with PPS hold out hope for breakthrough research that will overcome the disease?

 

MC:   There is a sharp division here. 

I think a positive outlook with a vision that sees beyond limitations is open to many possibilities.  Some PPS people applaud the hope that research offers.  Some, myself included, keep in touch with medical developments, ready to try something new if it should come along.  This includes medical mainstream options, alternative medicine and herbal supplements.  While few expect a “Salk vaccine” level of breakthrough in their lifetime, most realize that medical advances come quickly these days and want to be ready.

Others with PPS think research is wasted energy and “false hope” because nothing medical will help PPS.  They think a better use of their energy is to learn to live with their condition.  This second group sees braces and other assistive devices as the only thing worth doing.  Unfortunately, sometimes they are rather scornful of the first group.

Most PPS people think that hope is universal with different meanings to every individual and find it impossible to judge “hope” as false or cruel.  Others express their respect for personal preferences and beliefs that are essential for a meaningful life.

 

S:       Is there another Jonas Salk out there for PPS? 

 

MC:   Salk’s development of the polio vaccine solved a more serious public health problem than PPS.  Before the Salk vaccine, there was considerable public fear of polio.  This was unlike public concern with any disease today, including AIDS.  Polio visibility with both the public and medical community was extremely high.

PPS visibility with the public is considerably less than polio ever was.  There is little motivation for the medical community to focus serious attention on PPS.  On the other hand, breakthroughs with PPS will benefit other neuromuscular diseases which are still a great concern to the public.  Dr. Sam Pfaff’s research with motor neurons, along with his article and lecture, “Tracking Post-Polio Syndrome” shows his personal interest in PPS.  Many PPS people who attended Sam’s lecture at The Salk Institute on June 6 commented, “It’s about time…[they get involved with the aftereffects of polio].”  It is symbolic that Dr. Pfaff is using the same laboratory space once used by Dr. Salk

 

S:       It seems this is a disease with a shelf life -- that is, those of us who had polio are middle-aged and even older now and the disease will go away on its own at some point. For that reason, there cannot be much money behind research into PPS.  Is this a correct reading of the situation?

 

MC:   This is a very accurate assessment.  For the most part, individual doctors and the research community don’t see PPS as worth their attention.  Slow degenerative conditions rarely catch the public’s attention.  There are, however, more PPS patients than ALS patients.  While ALS is more debilitating and eventually fatal, the total quality of life lost by PPS patients is just as great, if not greater than, for ALS patients.  PPS patients experience their problems for many more years.

 

S:       Do PPS patients feel society/the medical community does not much care?

 

MC:   Yes, definitely.  What makes it worse is that our society/medical community doesn’t consider the advantage and benefit to helping PPS patients.  It would certainly help many patients with other related neuromuscular diseases.

 

S:       Is that demoralizing?

 

MC:   No, but it is very frustrating and discouraging.  I do not feel a sense of demoralization from PPS patients.

 

S:       Tell me a bit about the PPS support group.

 

MC:   There are 2 support groups in the San Diego area—San Marcos and La Jolla.  The San Marcos group is a small group that has been meeting for more than 15 years.  It was part of the original PPS organization that dissolved when the people on the board of directors moved out of the area.  However, a small group in San Marcos continued to get together.  The La Jolla group was formed in May ’98 after a few PPS people got together at my house.  The original goal was to provide a safe place for emotional support, distribute recent PPS information and find ways to meet PPS medical needs.

 

S:       You mentioned some people quit going, why?

 

MC:   Some people start coming to support groups for PPS information, they get it and quit after a few meetings.  Some people seek a sense of community with others who are experiencing the same problem.  (For them, the subtle sense and positive uplifting atmosphere of the group is important.)  Others only want to share their misery and complain.  If people don’t find what they are coming for, they don’t come back.  Some may not like the facilitator or other group members.

Large groups rarely provide an emotionally supportive environment.  As a consequence, small informal groups have formed that do provide emotional support and address other PPS needs.  A positive, supportive environment benefits the most people 

 

S:       Who seems to benefit most?

 

MC:   Those who find a sense of community with other PPS’ers. 

 

S:       Why?

 

MC:   Most people who are facing a debilitating medical condition are visible to the public.  Parkinson’s, Multiple Sclerosis, ALS, etc. have some degree of visibility with the public.  For the most part, the medical community and the public think polio is a disease of the past and are totally ignorant of PPS.  So that, in addition to our medical problems, we are invisible to the public.  However, as one large group, the PPS community has the advantage and opportunity to raise the awareness of the medical establishment in order to get an accurate diagnosis, the best available medical treatment and current research for PPS.

 

S:       It's clearly important to you and members of the group to keep up with the latest in PPS research, explain why?

 

MC:   As described above, not everyone finds it important to follow PPS research.  We have to do the research because our doctors aren’t doing it for us.  Some doctors thank us for keeping them up to date, while others are totally disinterested in anything that is PPS related.  Most often, we must be responsible for educating our own doctors about new information with regards to PPS.

 

S:       Any other thoughts you'd like to add?

 

MC:   Mark, I appreciate your support.  This is what motivates me…………..

 

After an episode of polio, I discovered that good medical care and a supportive environment are very important for an enriching life.  I learned this from my own personal experience at 3 years .  A local doctor misdiagnosed my condition as “only the flu.”  Later, when an ambulance rushed me to the ER with polio, the hospital staff put me in a storage room for several weeks.  I recovered with permanent damage to my left side.

During my 20s and 30s I was under the expert care of Dr. Kenneth Moser (pulmonologist) and Dr. W.C. Wiederholt (neurologist).  However, they both passed away before San Diego had a knowledgeable polio and PPS doctor. 

From my involvement with the San Marcos support group, I feel the anguish of many people and understand their frustrations with their doctors.  I am actively involved with the PPS community and determined to find solutions for myself and other people who are experiencing similar problems.

As my complications with PPS have worsened, I know that it is imperative to find expert medical care.  The physical losses of PPS have changed my life so that I am intensely motivated for a better quality of life.  I am also dedicated to enlighten the public and, more importantly, to solicit the help of the medical and research community. 

I know my life is “winding down” as a result of childhood polio and PPS.  However, I will always feel content in knowing that I have done everything I could to help myself, along with other people, when faced with insurmountable odds. 

These are some of the things I have done in this pursuit:

In August ’94 I contacted Maria Solis at KFMB Ch.8 (our local CBS TV station) and enlisted her help to air a story on PPS.  Together, she and I outlined the main concerns that PPS people face everyday.  Dr. Wiederholt joined the interview to support us.

In November ’95 I went to UCLA to see Dr. Susan Perlman for the first time.  It was refreshing to see a doctor who was, not only familiar with PPS, but very helpful.

In February ’98 E’Louise Ondash of the North County Times interviewed me and published a story on PPS.

In March ’98 I invited a few PPS people to my house to discuss possible solutions to the present and future problems we face.

In May ’98 the La Jolla group had its first PPS meeting.

In December ’98 I contacted Sandra Maas from Ch.8.  She did a segment on the history of polio and the aftereffects with PPS.  Once again, Dr. Wiederholt supported us with an interview (while he was undergoing chemotherapy for lung cancer).

In February ’99 I started publishing the newsletter Post Polio Notes for the San Diego area.  My intent was to reach the people who are housebound from serious complications of PPS.  However, with Dr.Perlman’s input, the newsletter’s circulation has expanded to other cities.

In August ’99 I saw Dr. Perlman and invited her to give a talk on PPS.  She enthusiastically agreed!  I was hopeful that her expertise would help many PPS people and also raise awareness in the San Diego medical community.

In October ’99 I got together with three other people and we started to organize the first SD PPS event in more than 10 years.

In March ’00 I contacted Kathleen Murray of The Salk Institute and she arranged for us to meet Sam Pfaff, Ph.D.  He discussed his research with motor neurons.  The Salk Institute agreed to host the PPS group with a lecture by Dr. Pfaff on “Tracking PPS.”

In May ’00 I contacted you (Mark Sauer) at the SD Union-Tribune to enlist your support for the two upcoming PPS events with Drs. Perlman and Pfaff.

June 6, ’00 The Salk Institute gave a warm welcome to 150 PPS people for Dr. Sam Pfaff’s lecture, questions and answers on “Tracking PPS.”  (It was the first polio related event at The Salk in over 40 years.)

June 18, ’00 Dr. Susan Perlman generously spoke for 90 minutes on “State-of-the-Art Approaches to PPS” to more than 155 PPS people at the Schaetzel Center.  She summarized the 3rd International March of Dimes PPS Conference and answered questions for 40 minutes.  Kathleen Murray gave Dr. Perlman a personal tour of The Salk Institute before returning to UCLA.

In July ’00 Steve and I distributed 70 Pfaff/Perlman video tapes to the public.

In July ’00 I met with you (Mark Sauer) and the organizers of Dr. Perlman’s PPS Symposium to ask you to consider a newspaper story on PPS.

In September ’00 I saw Dr. Susan Perlman and asked her to give another SD PPS Symposium, to which she readily agreed.

To be continued……………

For more information I can be reached at maryclare@cox.net

760 741 5075

http://sandiego_polio.tripod.com (note the underscore _ between sandiego and polio)

For information on the Pfaff/Perlman Video Tape call or email postpolio@cox.net

The San Marcos PPS Group meets the 1st Saturday of even months.
The La Jolla PPS Group meets the 2nd Thursday of odd months.

Call for information.