Welcome to the website of the Greater Boston Post-Polio Association! Rather than inundate you with a library of thousands of documents, we take a more selective approach to make it easy for you to find the most important and useful resources available. Many of the items here, such as our member-written articles, Positive Personal Solutions column and resource list originate with the GBPPA and will be found in few other places. We will be continuously adding to this site, so we hope that you'll visit often, and that you will find information here that will make coping with post-polio syndrome a little easier.

Please read our [disclaimer].

Last Updated: May 7, 2008

Recent Updates and Additions

• 02-24-07 - added vent users survey
• 03-28-07 - updated meeting notices
• 03-30-07 - corrected meeting notice
• 05-01-07 - added spring meeting notice
• 09-24-07 - updated meeting notices
• 12-10-07 - updated meeting notices and Pearson Fund
• 05-07-08 - updated meeting notices

GBPPA SPRING MEETING NOTICE

Date: Saturday, June 7, 2008
Time: 1:00PM to 3:00PM
Place: United Parish Church of Auburndale [directons]
Topic: Universal Design as a Tool to Adapt Your Home
Speaker: MaryAnn Parker-OToole, Director of Information at the Institute for Human Centered Design, Boston, MA

Ms O'Toole (polio at 6.5 months) will talk about how the developing field of universal design can be used as a guide to assist you in making your house or apartment more user friendly and responsive to changing needs as we get older.

Please join us at the United Parish Church of Auburndale, 64 Hancock St. Auburndale (Newton) MA. Come early (12:30) for light refreshments and to socialize. The meeting will start at 1:00.

GBPPA FALLMEETING

Please save Saturday, September 27 for the GBPPA Fall general meeting! Details of the program will be announced as plans are firmed up. This will also be the GBPPA's annual meeting with election of officers.

Metro West Support Group

The GBPPA Metro West support group will meet on the following dates:

Wednesday, April 16, 2008
Wednesday, May 14, 2008
Wednesday, June 18, 2008

For more information about the Metro West Support Group, click here

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What is Post-Polio Syndrome?

Post-polio syndrome, often called post-polio sequelae or the late effects of polio, is a condition which affects a growing number of individuals who contracted polio 30 or more years ago. Most polio patients recovered, at least partially, held responsible jobs and functioned reasonably well for years. Many now find themselves physically unable to maintain the active lifestyle they had struggled so hard to achieve. Post-polio syndrome is characterized by the following symptoms:

• unaccustomed fatigue
• muscle weakness
• respiratory difficulties
• muscle and joint pain
• intolerance to cold
• functional loss

Because of the virtual eradication of polio in the United States in the late 1950s, most members of the medical community and the general public fail to recognize such symptoms as relating in some manner to the original disease. Although medical researchers studying post-polio syndrome have uncovered some facts about the condition, no effective medical treatments have been found. Lifestyle changes, pacing and the use of adaptive equipment are the most effective way to minimize the effects of PPS.

The Greater Boston Post Polio Association

• individuals who originally contracted polio and who are now experiencing the effects of post-polio sequelae.
• members of the medical community interested in research into the causes of postpolio sequelae and providing treatment to those encountering the effects.
• families and friends of members as well as all others interested in furthering the objectives of the Association.

The Association’s Objectives

• to expand awareness of, and responsiveness to, the needs of individuals affected by postpolio sequelae as well as the needs of their families by disseminating information to the members, to the medical community and also to the public.
• to act as a support and information group for members, and to seek answers to common problems.
• to cooperate with local and national organizations in the development or enhancement of services which will benefit all concerned.

The Association’s Activities, Resources and Publications

• Meetings which feature speakers from various fields of interest and which provide opportunities for social interaction and networking
• Outreach programs for members unable to attend meetings, including newsletters, a telephone network and video tapes of selected meetings
• Participation in national conferences and sponsorship of regional seminars
• A voicemail telephone line, (781)596-8245 for members to make suggestions or to request information
• A quarterly newsletter, TRIUMPH, containing informative articles, meeting announcements and reports on GBPPA and satellite group meetings
• This website, http://gbppa.org or http://www.gbppa.org
• A library of useful articles which are available at meetings or by request
• Information packets for consumers and health care professionals
• A resource list including services and practitioners familiar with post-polio syndrome
• A list of vendors and installers of adaptive and assistive equipment

The Fred C. Pearson Memorial Fund, named in honor of a creative and generous man who made tremendous contributions to the GBPPA in many areas during his lifetime, was established to assist members of the Association of at least six months standing who are now encountering the effects of post-polio syndrome to purchase assistive equipment, including but not limited to walking aids (such as canes, walkers and special shoes), automotive or wheelchair accessories and tub or shower safety equipment (such as grab bars or special seats). It is also the intent to provide grants for unreimbursed services by a qualified healthcare provider such as initial diagnostic testing relating to post-polio syndrome or review of rehabilitation issues including evaluations of the home environment. The maximum grant is $600 and shall be not less than 25% of the total cost of the assistive equipment or services for which the grant is made.

The following criteria apply:

• The applicant must be experiencing financial hardship.
• The applicant must have exhausted all customary sources of financial assistance.
• A brief application must be completed.
• A letter from the applicant’s physician containing information (as outlined in the application) must be provided.
• A written quotation for the equipment or services from the vendor is required.

The Association encourages members who feel that they might qualify to request an application by calling the voicemail line.