PPS Forum
By Richard Louis Bruno
October 2008
Fatigue and “brain brownout” — difficulty focusing attention and word finding associated with fatigue — are the most commonly reported, most disabling and, unfortunately, the least believed of all Post-Polio Sequelae. The biggest problem is that there is no medical test to prove that you have fatigue. Research that we began in 1993 on the post-polio brain has documented damage done by the original poliovirus infection that prevents survivors from activating their brains and thereby causes fatigue and brain brownout. There are three new studies that support our findings.
A summary of the first study begins with a sentence that warms my heart: “While individuals with post-polio syndrome do not have diminished mental function when they are well rested, their mental function declines considerably after even moderate mental fatigue.” Researchers at the U.S. Uniformed Services University of the Health Sciences asked 65-year-old polio survivors to complete computerized neuropsychological tests of attention, thinking or memory once, and then again one hour later. The so-called “practice effect” typically improves scores the second time anyone takes neuropsychological tests. However, more than 40 percent of polio survivors had a decrease in performance on the second administration of seven of the eight computerized tests, while 50 percent did more poorly on at least three tests. Subjects didn’t make more mistakes the second time; they were just much slower performing the tests after being fatigued by taking the first set of tests. Slower performance on neuropsychological tests is exactly what our studies found. Polio survivors reporting severe daily fatigue required 23 percent to 67 percent more time to complete tasks requiring attention than did polio survivors with no or mild fatigue.
Why has our neuropsychological research and this new study found brain brownout to be related to fatigue in polio survivors? In our other studies, we used magnetic resonance imaging to look inside the brains of polio survivors. We found small individual or multiple “white spots,” (technically called hyperintense signal) in the brain activating system of 55 percent of polio survivors reporting moderate or higher daily fatigue, and no spots in those with mild or no fatigue. The more white spots, the more severe were polio survivors’ fatigue, problems with memory, thinking clearly, staying awake, mind wandering, attention and concentration.
Recently, researchers at Duke University published a study using both regular MRI, which we used, and a new, more sensitive imaging technique called DTI to look at white spots in the brains of individuals 60 and older without polio or any neurological disease. The study found that visible white spots on regular MRI may be just the tip of the iceberg, since DTI found that damage to the brain under the white spots was larger than the spots themselves. What’s more, the researchers concluded that those with white spots in one part of the brain may have invisible damage in brain areas where spots have not yet become visible on regular MRI, and that this damage may be preventing brain neurons from talking with each other. This could explain why 45 percent of polio survivors with significant fatigue had no visible spots on regular MRI. When it comes to seeing damage on MRI to polio survivors’ brain activating system, apparently little spots mean a lot.
So, there actually is physical evidence that poliovirus damage is related to brain brownout in fatigued survivors. But listen to this: Mayo Clinic researchers studied a virus in the same family as the poliovirus — the virus that causes the common cold. They infected some mice with cold virus and not others. Both groups had their memory tested by completing a maze. Virus-infected mice made more errors and couldn’t figure out where they were going. Sound familiar? The mice that made the most errors had greater damage to their brains. The study concluded that even the cold virus could cause “at least some degree of neurologic deficit” in humans.
If having a cold can cause brain damage, how can so many doctors still say that the poliovirus, a known killer of brain neurons, couldn’t possibly cause polio survivors to have brain brownout and fatigue? Time for doctors to read a medical journal or two and start seeing the spots.
Dr. Richard Bruno is chairperson of the International Post-Polio Task Force and director of The Post-Polio Institute and International Centre for Post-Polio Education and Research at Englewood Hospital and Medical Center; e-mail postpolioinfo@aol.com.
Reprinted with Dr. Bruno’s approval
CEPSA Meeting, September 27, 2008
Meeting called to order by Sandra Bath, President.
Pledge of Allegiance led by Lorraine Frew. Charlotte Richter led us in an Inspiration.
Sandra and Cheryl introduced our guest speaker, Dr. Anne Thompson. She gave a wonderful, informative talk and answered many “post-polio” questions. She had some good answers to some of our particular problems. She addressed the following five areas, she called them the 5 “Ps.”-for us as polio survivors. No 1—Planning-we need to plan to conserve our energy, No 2—Prioritize—what and to whom can we delegate? No 3—Pacing—we need to pace our activities, not overtire our time. No 4—Position—if you can sit, do it, if you can lie down, do it. No 5. Power/Labor Saving Devices. Use these and enjoy, they conserve our energy.
After her session, Sandra were called into business. The Treasurer’s report was approved as presented. We were encouraged to pick up some of the extra newsletters and send them to our family and friends.
Care Team Reports: Janet Di Claudio is ill; Velma Underwood’s nephew was killed in a boating accident; Tom Schendorf is having a knee replacement, Archie Ivey, and Beverly Polin need a call, Dan Sheehan’s brother has passed away. Dave and BJ Vance have moved: New address: 13032 Park Crescent Circle, Pineville NC 28134. Richard Graham’s wife, Linda, is having surgery.
Committee Reports: Nominating Committee is working.
There will be a movie day on November 22, at 11:00 at Bull Street Baptist Church.
Movie to be seen: “Breathing Lessons”. Bring a brown bag lunch to have after the movie.
December 6: Banquet at the Hilton Garden Inn. Ad Hoc Committee was appointed of Betty Goff, Terry Dunnermann, and Cheryl Brackin. Jim Veccia and Sandra will help where needed.
Announcement made of the International Polio Foundation tenth anniversary to be held April 23, 24 and 25 2009 at Warm Springs, GA. Sandra encouraged the members to attend. She had some enrollment and information for us to pick up.
Jim Veccia asked that anyone who would like to receive the newsletter by email, let him know.
By-Law Committee: Jim Veccia moved that the Executive Board meetings have a quorum of one plus ½ of the board members. Sec. Cheryl Brackin. Approved.
The meeting was adjourned there being no further business.
Respectfully Submitted,
Adrienne Stallworth, Secretary
Happy Birthday
- Billy Ray Washington – 3
- Charlotte Richter – 4
- Dan Shehan – 6
- Hattie Everson – 7
- Harvey Varnadoe – 15
- Beverly Jarvis, – 23
- Adrienne Stallworth – 31
Member Concerns
Tony Calandra Janet DiClaudio
Linda Graham Shirley Johns
Beverly Polin Tom Schendorf
Gloria Sullivan Velma Underwood
QUOTE of the MONTH
“Be careless in your dress if you must, but keep a tidy soul.” Mark Twain
CEPSA’s speaker for our October 25th meeting is Dr. Doug Masini, who will discuss with us our breathing and sleep disorder problems we are experiencing.
Dr. Doug Masini is a native North Carolinian who recently moved to Savannah from Bristol, Tennessee, to serve as Director of the Respiratory Therapy program at Armstrong Atlantic State University. Doug began his research into “accidental pedagogy” (or implicit learning) at Tusculum College in Greeneville, Tennessee, and completed his doctoral work at East Tennessee State University. In his fellowship he was supervised by the Appalachian Independence movement of Southwest Virginia, interviewing clients who had mastered complex assistive-augmentative technology. He was Clinical Assistant Professor at the James H. Quillen College of Medicine, where he worked in pediatric lung disease and sleep disorders, and in the Internal Medicine’s Allergy/Immunology Department as an Asthma Educator-Certified (AE-C). Doug’s topic will be “Tips for Better Breathing.”
Two Excellent web sites to visit for medical and handicap supplies:
www.beabletodo.com
www.diestco.com
CONTRIBUTIONS
The Coastal Empire Polio Survivors Association is a non-profit corporation which is tax exempt under IRS code 501c(3). We have no paid employees, only volunteers dedicated to helping all polio survivors.
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