28th June 1998

Help Change SSDI regs for PPS!

U.S.A. Residents Only

I NEED YOUR HELP!

On June 23, 1998, I had a telephone conference with officials of the Social Security Administration. I told them of our concern that so many polio survivors are being denied SSDI because local Social Security offices either are not aware of the existence of the guidelines governing disability determination for PPS (called the POMS for Evaluation of the Late Effects of Poliomyelitis (24580.010)) or ignore paragraph "E" in the POMS that describes fatigue as a cause of disability.

I told SSA that our 1985 National Survey of Polio Survivors documented that fatigue, not muscle weakness or "motor disorganization," is the most frequent cause of work disability. Yet, the two most common SSDI denial explanations for polio survivors with disabling fatigue are "you are able to sit, stand and move about well enough to work" and "although your leg is paralyzed this condition does not keep you from working."

I also told SSA that our 1990 National Survey of Polio Survivors and our neuropsychologic research have documented that severe cognitive impairments, typically clinically impaired attention and information processing speed, are the heart of disability caused by post-polio fatigue. Further, I told them that our research has found that abnormalities of brain activating hormones, lesions on MRI of the brain activating system and brain wave slowing are all related to the severity of post-polio fatigue (see PPS Library, below). Since these findings were not available in 1985 when we wrote the POMS they are not included in the description of post-polio fatigue in paragraph "E."

Therefore, to prevent polio survivors further stress and distress BY preventing continued denials by local SSA offices, I am asking SSA 1) to expand Paragraph "E" that describes fatigue as a cause of disability to include the disabling cognitive symptoms and exhaustion and to note that fatigue is the leading cause of work disability in polio survivors; and 2) for local SSA officials at the mid-July SSA Medical Policy Forum meeting in Annapolis be reminded of the existence of the POMS for Evaluation of the Late Effects of Poliomyelitis and that fatigue is the leading cause of work disability in polio survivors.

I need you to send letters A.S.A.P. to Senator Tom Harkin, your Senators and Congress person, SSA Commissioner Kenneth Apfel and Bill Anderson at SSA:

Senator Tom Harkin
731 Hart Senate Office Building
Washington, D.C 20510

Kenneth Apfel, Commissioner
Social Security Administration
Altmeyer Building
6401 Security Blvd., Room 900
Baltimore, Maryland 21235

Mr. William Anderson
Social Security Administration
Office of Medical and Vocation Policy
3-A-9 Operations Bldg.
6401 Security Blvd. Baltimore, Maryland 21235

Please ask them to work with me and the members of the International Post-Polio Task Force to modify the fatigue paragraph of the POMS for Evaluation of the Late Effects of Poliomyelitis and, especially, to place information about post-polio fatigue on the agenda of the mid-July Medical Policy Forum meeting (where local SSA officials gather to discuss SSDI problems) and to hand out the POMS at that meeting.

Time is of the essence! We have only one week to change the Medical Policy Forum meeting agenda! Please "cut and paste" a letter to your Congress persons and SSA officials today.

If we can remind local SSA officials about the regulations about disability for PPS and change the POMS we can drastically reduce the number of denials for SSDI!

THANK YOU for your help!

Dr. Richard L. Bruno
Chairperson
International Post-Polio Task Force
and
Director
The Post-Polio Institute
at Englewood Hospital and Medical Center Englewood, New Jersey 07631
Phone: (201) 894-3724 Toll Free: 1-877-POST-POLIO
Fax: (201) 894-0324
PPSENG@AOL.COM

Set your browser to:
http://members.aol.com/harvestctr/pps/polio.html
for the PPS Library and all of our papers describing our research and treatment of PPS.
Many of Dr. Bruno's papers are also available in the Lincolnshire Post-Polio Library and can be found under Harvest Centre Library and Kessler Institute for Rehabilitation.

Post-Polio Seminar in Las Vegas

Saturday, October 10, 1998

A one-day seminar for survivors and caregivers will be held in Las Vegas on Saturday, October 10, 1998. In keeping with all the freebies and "on-the-cheap" specials available there, no registration fee will be charged.

No further details of the seminar were included in the announcement but to receive information by return mail, send a business size # 10 envelope addressed back to yourself with first-class postage affixed to --

Caroleanne Green
National Polio Care Advocates
741 Gullwing Ln
N Las Vegas NV 89031
(702) 649-9361
FAX (702) 649-6824

Thanks to Tom Walter for passing this on.

23rd June 1998

COLORADO POST-POLIO CONNECTION CONFERENCE

FUTURE APPROACHES FOR POLIO SURVIVORS

AUGUST 28-29, 1998
HOLIDAY INN DENVER/NORTHGLENN

The Colorado Post-Polio Connection cordially invite you to attend our 1998 state conference. The featured speakers are Dr. Stanley Yarnell and Dr. Marny Eulberg. There will be twelve workshops including special guest speaker Grace Young, BS, MA, OTR, from Fresno California, a specialist on post-polio energy conservation.

For more information contact Lynda Smeltzer at Colorado Easter Seal 1-800/875-4732, or e-mail lyndas@cess.org or mhamil1185@aol.com (the latter address is a correction to that originally posted).

An updated version of this item can be found in NewsBites 14th July 1998

Mary Ann Hamilton

20th June 1998

*CONFERENCE REMINDER*
TORONTO (ONTARIO) POST-POLIO CONFERENCE

SOLUTIONS FOR THE FUTURE - POST-POLIO SYNDROME

JULY 10-12, 1998
INTERNATIONAL PLAZA HOTEL & CONFERENCE CENTRE
655 DIXON ROAD TORONTO,ONTARIO CANADA

FOR CONFERENCE REGISTRATION PACKAGE E-MAIL omod@inforamp.net Now you can register online as well as get all the details about our upcoming conference in Toronto, Ontario, Canada at: http://www.omod.org/solution.html (OMOD site moved - see OMOD entry in International/National/Local Support Organizations Directory.)

CONFERENCE HIGHLIGHTS:
Keynote Speaker - Mavis J. Matheson, MD Aging with a disability
Saturday Evening Gala Banquet - Murder is planned
Dr. Adam Gruszczynsk - The Impact of Post-Polio on Family Relationships
Choosing Independent Solutions
A First-Timer's Session
The Newsletter Exchange - What We've All Learned
Permission Giving - Adjustments And The Late Effects of polio
Bracing & Shoes ETC. ETC.

Send For A Registration Package And Find Out Everything Else Then You'll Know As Much As I Do!!!!!!!!!!!!!!!!!!!!!!!!!!!

We've even Planned a tour of Toronto & Niagara.

For more information contact:

Kim Sialtsis
Provincial Post-Polio Coordinator
Ontario March of Dimes
omod@inforamp.net OR guild@ican.net
+1 (416) 365-3463 ext. 240

Look forward to meeting everyone at the conference!!

Kim Sialtsis

15th June 1998

NINDS Post-Polio Research Budget Increased

According to the Polio Connection of America (PCA), the amount of funding allotted to Post-Polio Syndrome research by the National Institute of Neurological Disorders and Stroke (NINDS) increased tenfold in the 1997/98 budget. The new figure of $2,354,534 compares to an allocation of only $246,076 for the previous fiscal year. The PCA goes on to report that the funds have been allotted to 23 research programs. Dr. Marinos C. Dalakas, author of over 31 peer reviewed medical journal articles on various aspects of post-polio conditions, heads the Neuromuscular Disease Section of the Medical Neurology Branch at NINDS.

10th June 1998

Post-polio symposium being held in San Francisco on Saturday, June 13th.

It is free (no cost or charge). The RSVP phone number is (415) 750-4978; ask for Angela Allen. The location of the symposium is the San Francisco Recreation Center for the Handicapped. Directions say: "Location: behind San Francisco Zoo. Take Skyline Blvd. south from Sloat Blvd., turn right on Herbst Rd., Rec Center is on left, ample parking." The program includes topics such as:

1. "Post-Polio Fatigue; Multifactorial Experience"
2. "Exercise Guidelines for Gentle Reconditioning"
3. "Energy Conservation Techniques"
4. "Drug Outcome Studies: Mestinon & Myotrophin Examined"
5. "Eating for Health"
6. "Dealing Wtih Emotional Aspects of Chronic Pain"
7. "Attacking Chronic Musculoskeletal Pain With Exercise & Mobilization"
8. "Joint and Back Conservation Techniques"
9. "Managing Respiratory Factors Contributing to Fatigue"
10. "Cautionary Note on Habituation and Addiction as a Result of Chronic Pain"
11. "Dealing With Disability: Healing the Blues" (this last is by Dorothy Nudelman, who wrote a book about her experience with post-polio syndrome).

There is also a question and answer session and lunch. The various presentations are being given by various specialists, doctors, etc.; the author is the only one who doesn't have a bunch of capital letters and initials after her name!

Apart from the contact name and phone number in the above announcement, we have no information on the organisers. We draw your attention to the RSVP request if you wish to attend. LincsPPN Web Administration.

Details about Dorothy Nudelman's book can be found at Lincolnshire Post-Polio Network Library - Books [Healing The Blues]

19th May 1998

Richard L. Bruno receives honorary degree from Springfield College

EXPERTS IN SCIENCE, EDUCATION, SPORTS, AND BUSINESS RECEIVE HONORARY DEGREES FROM SPRINGFIELD COLLEGE

Springfield -- Springfield College today [17th May] awarded honorary degrees to: Richard L. Bruno, director of the Post-Polio Institute at Englewood Hospital and Medical Center; Lucinda Williams Adams, educator and Olympic gold medalist; John Gallup, chairman of Mass Ventures Corporation and retired president of Strathmore Paper Co.; and Harold Smith, president and chief investment officer of the YMCA Retirement Fund.

The honorary doctor of humanics degrees were presented at the college's 112th commencement, at 9:30 a.m., at the Springfield Civic Center. The college also awarded 734 bachelor's degrees, 452 master's degrees, five certificates of advanced study, and seven doctor of physical education degrees. More than 800 of the recipients were be present for the ceremony before an anticipated audience of 5,300.

The college has, historically, awarded honorary degrees to individuals whose extraordinary contributions to society exemplify its distinctive humanics philosophy which emphasizes development of the whole person consisting of spirit, mind, and body, for leadership in service to others. Past recipients include: Dr. Martin Luther King, Jr.; William H. Gray, III, president of The College Fund/UNCF; Dr. Tenley Albright, surgeon and Olympian; and sports greats Robert Cousy and Julius Erving.

Bruno is widely acknowledged as the world's foremost expert on post-polio sequale (PPS), a condition in polio survivors characterized by weakening muscles, pain, and fatigue. A 1977 summa cum laude graduate of Springfield College, he is credited with discovering environmental and psychological factors and polio-related brain stem lesions that cause PPS. He is a crusader for funding for research into PPS whose prolific writings have been printed in medical, science, and popular publications. He is a consultant to the federal government, United States Congress, and the Veterans Administration and he has received numerous professional awards.

Adams, who won an Olympic gold medal in relay racing in 1960, has served in leadership positions in a number of organizations dedicated to improving education, athletics, health, and social service, and has won awards as an educator, coach, and athlete. She is a member of the halls of fame of the State of Georgia and the City of Savannah, Georgia and the Athletic Hall of Fame of Tennessee State University. She recently retired from a distinguished career in the Dayton, Ohio public schools where she rose from teacher and coach through a series of increasingly responsible positions to associate director of comprehensive health, physical education, driver education and safety. She is member of the Ohio State Board of Education's Advisory Board for Health and Physical Education and an adjunct faculty member and student teacher supervisor at the University of Dayton.

Gallup was cited for contributing his expertise to economic, health-care, cultural, and educational improvement in Greater Springfield throughout his career as a business leader. Now chairman of Mass Ventures Corporation, he retired as president of Strathmore Paper Company in 1992. Over the years, he has served in leadership positions in such community institutions as Baystate Medical Center, the Visiting Nurse Foundation, Springfield Symphony Orchestra, the World Affairs Council, and Junior Achievement of Western Massachusetts. He is currently chairman of the Community Service Learning Center and of Baystate Health Systems governance and investment committees and a director of the University of Massachusetts Campus Planning Committee, Plan for Progress, Economic Development Council of Western Massachusetts, and Community Middle School.

Smith was credited for "contributing your professional expertise and personal dedication to helping individuals who enable others to reach their highest potentials." He heads one of the nation's most lucrative funds that exclusively serves the retirement investments of YMCA professionals. He serves in leadership positions throughout the YMCA movement. He has been pastor of Unity Hill United Church of Christ in Trumbull, Conn. since 1958, and contributes his financial expertise to the United Church of Christ as a trustee of its pension boards and foundation, and formerly to its Residences, Inc. He is also chairman of the Bridgeport Area Foundation's investment committee and a trustee and corporator of Springfield College.

Founded in 1885, Springfield College is a private, coeducational institution that emphasizes the education of leaders for the allied health, human service, and physical education professions. Its distinctive humanics philosophy, education of the whole person consisting of spirit, mind, and body, prepares students for humanitarian service. It is world renowned as the birthplace of basketball, a game created by Professor James Naismith in 1891, and as the alma mater of William G. Morgan, inventor of volleyball. It also has a long-standing and close relationship with the YMCA. Springfield College offers 40 undergraduate and graduate majors and serves more than 3,000 traditional, nontraditional and international students at its main campus in Springfield, Massachusetts, and at its satellite sites in Boston, Tampa, New Hampshire, Vermont, Delaware, California and Sweden.

Contact: Claire E. Burns Media Relations Director (413) 748-3044 (office) (860) 659-3454 (home) (413) 730-8683 (pager).

3rd May 1998

Post-Polio Conference Correction

The dates for the conference "Post-Polio Syndrome - Solutions for the Future" taking place in Ontario, Canada, this coming July, are the 10th to the 12th and not the 11th to the 13th as previously advertised.

For contact details see the item Post-Polio Conference Notification in the NewsBites Archive.