Disability Matters with Joyce Bender – February 10, 2004

Notes by Gladys Swensrud

 

Guest from Post Polio Health International (formerly GINI) was Joan Headley

Post-Polio Health International (PHI)

4207 Lindell Boulevard, #110

Saint Louis, Missouri 63108-2915 USA

314-534-0475Entrance to office of Post-Polio Health International

314-534-5070 fax

info@post-polio.org

Website - http://www.post-polio.org/

 

Phyllis Hartke – President of the San Francisco Bay Area Polio Survivors group was the only outside question that they fit into the presentation.  She was requesting to know when the 2005 conference would be scheduled.  

The St. Louis 2005 Polio – Post polio and  Ventilator Conference is scheduled for June 2 – June 4, 2004.  The conference organizers can be reached through info@post-polio.org to reserve a spot, or you can call 314-534-0475.  The entire focus of the conference will be on polio and post polio related issues.  They will discuss the newest info on research and solutions to living with the consequences of polio.  It will be on the same format as the Kaiser/Oakland Conference.  As in Oakland, they will also focus on education of health professionals, OTs and PTs, training for support group leaders to exchange information and learn from each other.  It is also a great opportunity to network and meet other people.

 

Ventilator assistance was briefly discussed as part of the focus for Post Polio Health International.  They discussed briefly home mechanical ventilation from the perspective of those that have dealt with the problem from the onset of polio symptoms until the present or those who only use the assistance at night.  They reminded us that many diseases, like MS or those with spinal cord injuries, also use ventilatory help.

 

Joan was asked to explanation of polio is.  In simple terms, it is caused by a virus, and the polio virus can enter through a person’s mouth or nose, where it attacks certain parts of the nervous system – anterior horn cells and parts of the brain.  Nerves are affected by the virus, which stuns and paralyzes the muscles.  After a certain length of time, if the damage is bad enough, the muscle affected will wither.  Nerve sprouting enabled the nerve to find other muscles to connect to help compensate for the death of a muscle that original nerve might have served.

 

Their group purpose is to enlighten people to understand post polio and get the help that they need.  They also want to alert health professionals to the fact that although they may have never seen an acute case of polio, they may be called upon to treat a patient that is experiencing the late effects of polio.  They also explain to people how they may stay employed if they so choose, how to take on new assistive devices to keep them functioning at their best and they work with employers to help keep people functioning and productive if they are able to do so. 

 

Polio in the world/The World Health Organization keeps track of and reports on the active cases of polio throughout the world, like India and Nigeria.  Often times there are cases of war, and children are not receiving the vaccinations that they should be getting.  Their hope is to share what they learn and make it culturally appropriate for other nations so polio survivors throughout the world are informed as well.  They feel that their group and website can be a resource for people who are not yet experiencing the late effects of polio to become informed of the problems associated with Post Polio Syndrome.

 

When asked the question, how is Post-Polio Health International working toward equality for people with disabilities, what came to Joan’s mind was that the greatest help with equality would be a more equitable way of funding health care.  It would be wonderful to get management and treatment earlier and to get funding for assistive devices without having to fight for them.  Good funding might eliminate the concept of begging for funding, which makes those with disabilities look pitiful in the process.  It always seems to be a fight for equality to get funding.  Just getting to a doctor to stay their healthiest is difficult for some people.

 

Concerning the use of assistive devices, the motto Joyce Bender likes to quote is: Get what you need, so you can get what you need.

 

Joan suggested that as a disability group, perhaps we should study other disenfranchised groups to see what they do to approach certain problems.  We might, when appropriate, join forces with them as well.  (As Dr. Torres-Gil suggested.)  People with disabilities could help this cause by observing and participating in what is happening within the Civil Rights movement because we do qualify for that issue.  Some people with Post Polio don’t see themselves as disabled, although they really are.  It is a matter of living with the issue all your life, and thus they become common place to you, so you don’t recognize that you, too, have a disability.

 

We all have the big picture in common.  The ADA has been attacked by the Supreme Court.  Regardless of the disability, if we joined together and were united on basic issues, we would receive more equality and access.  34 million people in the U.S. are disabled, and uniting them all is a good solution toward getting recognition from those in political circles that could make a difference in helping us.