Post Polio

Astrid told us that she contracted polio as a 20-year-old college student in Columbia in 1955. She spent a great deal of time in an iron lung and suffered through a lot of intensive physical therapy. She thought she had recovered completely and went about her life, marrying, raising children and working.
 
As the years went by, she noticed that she was weakening and having a more and more difficult time with some of her muscles. She never even considered that the polio was returning, as she did not know about post-polio syndrome either.
 
She is 74 now and is continuing to lose ground to this disease. She suffers from sleep apnea, because her lungs cannot push air in and out very well, so she has a machine to help her at night. She also has a backup machine in case the first one fails.
 
Astrid said that most doctors are not very familiar with this disease either, so she has to be her own advocate by researching all the possible treatments on the internet.  Recently she needed cataract surgery and had a difficult time convincing an ophthalmologist to do the procedure, because anesthesia is not good for someone with badly impaired lung function.
 
Astrid said that MD does not spell GOD, a lesson that we probably all need to learn. She is hoping that ongoing adult stem cell research will provide a solution to this disease, which does not show up for at least 10 years after the initial polio has resolved. She noted that people her age are dying "like flies" now, so there is no great push for more research.  However, millions of people worldwide will continue to develop post-polio syndrome as they age, so the problem is not going to go away just because her generation is dying off.
 
There are a couple of good websites: www.ppsupoortoc.org , which is the Post Polio Support Group of Orange County; and RanchoPPSG@hotmail.com, which is the newsletter for the Rancho Los Amigos Support Group.