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The " TeamWork" Newstand

The Teamwork Newstand is a collection of books about different forms of so-called disability.   It was made up in 1996, but still is left here for your perusal.  Similarly, a list of books from Bob Mauro is also available here, dated 1996 again.

Eating (In or Out)

There is no reason not to enjoy the pleasures of the table simply due to disability of any form.   These articles and mailing lists could help you to become a goumet of the first order..... and a healthy one, too.

                                                      

A) DEFINITIONS

1. CFS: Chronic Fatigue Syndrome.
   A serious and complex Illness characterized by incapacitating fatigue, Neurological problems and a constellation of other debilitating symptoms. Frequently confused with Idiopathic chronic fatigue.
   
   Chronic Fatigue Syndrome is also known as Myalgic Encephalomyalitis (ME), Epstein-Barr virus (CEBV), or Chronic Fatigue Immune Dysfunction Syndrome (CFIDS)
   
   Links to follow are:-
   
   http://www.noah-health.org/english/illness/neuro/cfs.html Search this engine for ,say, Chronic Fatigue, and it will give you many useful links.

        http://www.cfids.org/
        http://www.niaid.nih.gov/factsheets/cfs.htm
http://chronicfatigue.about.com/mbody.htm?once=true&       

    2. CFIDS: Chronic Fatigue Immune Disfunction Syndrome. (See CFS.)

1. Type I diabetic is insulin dependent
2. bipolar affective disorder (aka manic-depressive illness)
3. What does AMC stand for?
   Arthrogryposis Multiplex Congenita.
4. What is Arthrogryposis? Arthrogryposis (Arthrogryposis Multiplex Congenita) is a term describing the presence of multiplejoin contractures at birth. A contracture is a limitation in the range of motion of a joint. In some cases, few joints may be affected and the range of motion may be nearly normal. In the "classic" case of arthrogryposis, hands, wrists,elbows, shoulders, hips, feet, and knees are affected. In the most severe cases, nearly every body joint may be involved including the jaw and back. Frequently the contractures are accompanied by muscle weakness which further limits movement. Arthrogyposis is relatively rage, occurring in one in 3,000 births.
5. Fibromyalgia (FI-bro-my-AL-ja):
   A chronic, incurable, but not life-threatening disorder characterized by widespread, constant pain; the inability to achieve restorative sleep; exquisitely tender points in predictable locations throughout the body; and by a wide variety of symptoms that mimic other illnesses. Its cause is unknown, but it is most commonly thought to be a disturbance of one or more neurotransmitters (primarily serotonin), or of the hypothalamic-pituitary-adrenal axis. It tends to run in families, afflicts 5-6% of the population (about 80% of them women), and often follows a severe illness or injury. About one-third of people with fibromyalgia are permanently disabled.
   >
6. FM: See Fibromyalgia
7. NDA(not diagnosed with anything) fibromyalgia.htm
8. PWD (people with disabilities)
9. PWBPD ( person with bipolar disorder)
10. DUD (diagnosed unipolar depression)
11. Langer Giedion Syndrome, or Trichorhinophalangeal Syndrome Type II,
    occurs as a result of a piece missing from the long arm of Chromosome 8. Children with this syndrome have distinctive facial features because of their bushy eyebrows, bulbous nose, broad nasal bridge, and prominent philtrum (that crease that runs under your nose to your lip). They are microcephalic (have small heads) and have sparse scalp hair. Mental retardation, delayed speech development and hearing loss are common. They also have multiple exostoses, (bumps of bone that grow off the skeleton) and a host of things that are too difficult for me to understand, let alone explain.
12. Paralysis-partial or complete loss of function, especially when involving the motion or sensation in a part of the body.
13. nerve regeneration :-Andrew Blight, Ph.D. and Ronald Podhajsky, Ph.D., at UNC continue their research in the field of spinal cord injury and have received a new grant to study "Development and testing of a model for the study of mammalian optic nerve regeneration" through the Canadian Spinal Research Organization.. With his research efforts expanding Dr. Blight recruited Riyi Shi, M.D., Ph.D. from Purdue University , as a Research Fellow and welcomed Tomoko Asano, M.D., as a visiting professor from Japan. Dr. Asano will be spending one year in the lab studying spinal cord injury and rehabilitation.

1. B) QUESTIONS
   1. The question most frequently asked ME(Tammy) first is, "What happened to her?" referring to Andrea, sitting beside me in her wheelchair. It is interesting that even little children, ages three and four and five, have the idea that if someone is in a wheelchair and their legs don't work, neither does their brain. (Where does that idea come from?) So they ask me. And my response is always, "Why don't you ask her?" and smile to reassure them. I guess we try very hard to project the attitude that Andrea's paralysis and life support dependency isn't a problem - it's just a different lifestyle. Some people handicap themselves with alcohol. Some people are so filled with hate they create their own handicap.Some people choose to live in the fast lane and disable themselves from family relationships and friendships, becoming work junkies for the love of money. That is their choice of lifestyles. Different from ours, and ours is different from theirs. If we all lived the same lifestyle, wouldn't that be pretty darn boring? And if we were all cookie cutter people, we could line up in rows and no one would ever be able to tell us apart. And frankly, my ego wouldn't handle that very well!! (Chuckle!)
   2. My most frequently asked question is:
      But she looks so normal, are you sure she has developmental delays?
   3. My favorite FAQ was asked of my cousin when she was a seven year old.
      Both of her parents are dwarfs, she is normal stature. My aunt overheard another girl ask my cousin that she met at the beach, "Why are your parents so short?" my cousin, "They're big enough for me." end of discussion.
   4. What is a spinal cord injury?
   A.  A lesion of the spinal cord that results in paralysis of certain areas of the body, along with the corresponding loss of sensation. Paraplegia refers to paralysis from approximately the waist down, and quadriplegia refers to paralysis from approximately the shoulders down. The sensation issue for both paras and quads is not cut and dry. Many with spinal cord injures [about half of all those injured] do have sensation in their legs, arms, and other paralyzed regions of the body, but the motor function is gone. [Those with sensation are called 'incomplete' injuries, those without sensation, are termed 'complete.']

1. 
2. C) AREAS TO CONTACT FOR HELP
   1. MedWeb: A complete WWW listing of Internet Information Resources about all Health problems
3. Internet Medical Info: .
   A listing of drugs and illnesses relating to Mental Health

1. I get Anxiety attacks, can I find similar people?
   
   ANXIETY-L, to subscribe mail to listproc@frank.mtsu.edu leave subject blank and subscribe ANXIETY-L <yourname> in the body of the message. Also on the Web
2. Where can I get additional information on Arthrogryposis? AVENUES - A National support group for Arthrogryposis Mary Anne and Jim Schmidt PO Box 5192 Sonora, CA 95370 209/928-3688
3. AVENUES Internet Mailing List To subscribe contact: SUPERVISOR@hoffman.mgen.pitt.edu.

4. 

1. National Federation for the Blind

National Eye Institute

University of Washington

NorthWest Regional Spinal Chord Injury System

The Sibling Support Project

The Sibling Support Project provides training and technical assistance to agencies and organizations across the United States. The project's goal is to increase the availability of services for brothers and sisters of people with special health and developmental needs. Also available is list of dates, locations, and contacts for upcoming workshops , and ways to contact us for more information about arranging workshops.

What is covered in training offered by the Sibling Support Project and for whom is it intended?

The Sibling Support Project offers no- or low-cost state-wide (or in some instances, region-wide) workshops designed to:

increase family members' and service providers' awareness of issues faced by brothers and sisters of people with special health or developmental needs; and

teach family members and service providers how to create peer support and education programs-Sibshops-for school-age brothers and sisters.

International Lesch-Nyhan Disease Registry

Snipped from the Registry Web Page:

<<<<

The Matheny Institute of Applied Research is undertaking the task of establishing a Lesch-Nyhan Disease (LND) Registry.  Building on the reputation of the Matheny School and Hospital as a leader in the care and treatment of individuals with LND, the Institute seeks to establish a database that will facilitate communication and the sharing of data among doctors, researchers, caregivers, and families dealing with this very rare genetic disorder.

Given the rarity of the condition, it is virtually impossible for researchers studying new treatments or possible cures to contact more than a handful of individuals with whom to test their theories.  Families and caregivers frequently feel isolated and have no reliable method of obtaining the most up-to-date information on treatment options, and they frequently have difficulty finding physicians in their area with knowledge of LND.  It is our hope that the Lesch-Nyhan Disease Registry will help to alleviate some of these problems

>>>>

Another link is

http://www.hopkinsmedicine.org/press/1996/MAY/199603.HTM

This contains details of the Disease in clear, non-jargonese, and is quite distressing reading.   It also holds out a ray of hope for the future, not yet achieved, but on it's way.

Also listed are more conventional resources such as:

Lesch-Nyhan Registry

New York University School of Medicine

Department of Psychiatry

550 First Avenue

New York, NY 10016

Phone: (212) 268-3333

Contact: Lowell Anderson, MD

International Lesch-Nyhan Disease Association

11402 Ferndale St.

Philadelphia, PA 19116

Phone: (215) 677-4206

These, and other links, are contained in

http://www.kumc.edu/gec/support/lesch.html

New Mobility Magazine (E-text)

While unsentimental and uncompromising, New Mobility's voice is practical, knowing and friendly. New Mobility covers people and issues that matter to people with disabilities: medical news and cure research; jobs; benefits; civil rights; sports, recreation and travel; fertility, pregnancy and childcare. And there's a lot more, too.

"Disability isn't all misery or triumph, pity or admiration," says New Mobility editor Barry Corbet, an award-winning author and filmmaker and paraplegic for 28 years. "Disability is news, art, politics, humor, healing, recreation, travel, show-biz and rehab-biz, and that's what we do."

Landeau-Kleffner Syndrome (LKS)

Landau-Kleffner Syndrome  is an illness of youth.  It develops young, about between 4 and 8, and has symptoms that mimic deafness.  It is best diagnosed with sleep tests (EEG's), and will develop into Epilepsy in most cases.   Generally speaking, it will disappear as the child grows.

Howeverr, others have concentrated their efforts on this subject, whilst I have only brushed aainst it;   I therefore cauiously but sincerely refer you to others who have made a greater study of the syndrome.

D) INTERNET RESOURCES

1. The Library of Congress has placed a variety of files on a central computer for anonymous file transfer by Internet users. ftp.loc.gov (140.147.2.69)
2. http://dir.yahoo.com/Society_and_Culture/Disabilities/ (medicine or medical is the next directory-I forget)
   http://www.lib.umich.edu/chhome.html which gives them The Clearing House for subject-oriented Internet resource Guides
   or
3. gopher://una.hh.lib.umich.edu:70/00/inetdirsstacks/medclin%3Amalet which gives them the Medical List
   And then there's Medicine Online http://www.meds.com

1. Then, there's Stephanie del Sylva's List of Lists, which aims to have an entry for every mailing list on the Internet. The Web page is searchable by keywords, or it can be downloaded via Usenet in 21 parts.

Post Polio Syndrome and Shufflebrain's lexicology on it

Leading to The Rollin' Rats Page and The Polio Survivors' Page.

Another good Polio site is Robert Mauro's Page.

National Rehabilitation Centre for the Paralysed (NRCP)

This is a British Centre for those who have lost muscle tone severely, from (it seems) whatever cause - spinal chord injury, brain injury, etc.... the list is endless,

.

The Alzheimer's Association is the oldest and largest American national voluntary health organization dedicated to research for the causes, cure, and prevention of Alzheimer's disease and to providing education and support services to Alzheimer's patients, their families and caregivers.

It was founded in 1980 by seven independent caregiver groups of dedicated family members. It is officially known as the Alzheimer's Disease and Related Disorders Association. The Association works through a network of more than 221 local chapters , more than 2,000 support groups and 35,000 volunteers nationwide.

1. Von Hippel-Lindau Syndrome

Von Hippel-Lindau Disease, abbreviated VHL, is a genetic condition involving the abnormal growth of blood vessels in some parts of the body which are particularly rich in blood vessels.

While blood vessels normally grow like trees, in people with VHL little knots of capillaries sometimes occur. These little knots are called angiomas, or hemangioblastomas.

These angiomas may cause problems, and problems can develop around them. For this reason they need to be carefully monitored by the medical team.

SCLERODERMA

The word "scleroderma" means "hardening of the skin" and refers to one of the possible physical effects of the disease. Approximately 800,000 people in the United States have scleroderma. Women are affected three times as often as men. Although the disease can develop at any age, it most frequently begins in the middle years. Scleroderma is a chronic and often progressive illness.

In someone suffering with scleroderma, "collagen," a protein manufactured by the connective tissues of the body, is produced in excess. The over-production of collagen can be likened to the process of scarring, which is the way the body heals a wound. However, for persons with scleroderma, the scarring gets out of hand. This is because the cells that control the production of scar tissue do not get the proper message that tells them to: "STOP PRODUCTION!" As a result, the production of collagen is unregulated and therefore abnormal. Consequently, excess collagen is deposited in various organs and/or tissues of the body, especially in layers of the skin.

It is important to stress that the symptoms of scleroderma vary greatly from person to person. It is as though each person with scleroderma has his/her own version of the disease. Although scleroderma can indeed be serious, most people are able to live normal life spans with varying degrees of discomfort and/or disability.

I - C A N

This is a good introductory gateway for those with amputations. I-CAN specialises in Child Amputations, or in children born with limb defects, but has links to all areas of amputation support. One link that particularly affected me was entitled "Don't fix me - I'm not broken" and that was the attitude it portrayed; "I don't need 'fixing'; I'm not 'broken' in the first case".

I wish I could give this remarkable page more space, but I am truly running out of space in this page; and the 'simple expedient' of starting another file promptly means that people miss things because they don't link to it. So my apologies to the author, and a full recommendation to follow this link.

1. 
   1. E) LISTS ON THE INTERNET

For more information contact FIBROM-L, the fibromyalgia discussion group <listserv@vmd.cso.uiuc.edu with the message Subscribe Fibrom-l Your Name>, read the newsgroup alt.med.fibromyalgia, or send email to wmson@equinox.shaysnet.com.

Name: ADA-LAW Description:
This list is a discussion about any aspect of the disability-related laws.
Contact: wtm@sheldev.shel.isc-br.com
Bitnet Address: NDSUVM1
Internet Address: VM1.NODAK.EDU

Name: ALS Description:
This is a discussion list for those interested in ALS Amyotrophic Lateral Sclerosis, or Lou Gehrig's Disease). This list has been set up to serve the world-wide ALS community. That is, ALS patients, ALS support/discussion groups, ALS clinics, ALS researchers, etc.. Others are welcome (and invited) to join. THIS IS NOT A LISTSERV SETUP.
Contact: bro@huey.met.fsu.edu (Bob Broedel)
Bitnet Address:
Internet Address: BRO@HUEY.MET.FSU.EDU

Name: BLIND-L Description:
Computer use by and for the sight impaired discussion list. This list is intended to provide a forum for discussion of computer use by the blind and visually impaired. Topics relating to use of VM/CMS and PCs are of particular interest, but discussion of other systems is also welcome.
Contact: Daniel P. Martin (dmartin@uafsysb)
Bitnet Address: UAFSYSB
Internet Address:

Name: CFS-L Description:
This list concerns Chronic Fatigue Syndrome. The discussions seek to serve the needs of persons with chronic fatigue syndrome by enabling a broad range of CFS-related topics. Subscription is open and the list is unmoderated.
Contact: Roger Burns Bitnet: Bfu@nihcu.bitnet;
Internet: rburns@cap.gwu.edu
Compuserv: 73260.1014@compuserve.com genie: r.burns34@genie.geis.com
Bitnet Address: NIHLIST
Internet Address: LIST.NIH.GOV

Name: CYSTIC-L Description:
CYSTIC-L is a free email service dedicated to the exchange of information
and support specific to cystic fibrosis. Since 1994, CYSTIC-L has been
sharing both casual banter about the varied impact that CF has on our
lives, as well as technical and medical information exchanges that help us
to overcome the more unpleasant factors that this silly little gene imposes
upon us.  There are over 500 list subscribers sending a total of around
20-60 messages per day; a digest option is available which compiles
messages and distributes them periodically during the day. Members include
people with CF and those who share their lives: medical professionals,
scientists, researchers, parents, grandparents, spouses, siblings, friends
and significant others.

To subscribe send the following line in the *body* of an email (the
"Subject" line is ignored) to LISTSERV@PEACH.EASE.LSOFT.COM

SUBSCRIBE CYSTIC-L Your-first-name Your-last-name

Name:. DEAF-L Description: Discussion list for issues concerning the hearing impaired.
Contact: Roy Miller (ge0013@siucvmb)
Bitnet Address:
SIUCVMB Internet Address:

Name: DEAFBLND Description:
Dual sensory impairment (deaf-blindness) is the topic of this forum. The mission of DEAFBLND is to share information, inquiries, ideas, and opinions The list is open to professionals in the field, to individuals with DSI, and to their families and friends.
Contact: Bob Moore (str002@ukcc)
Bitnet Address: UKCC
Internet Address: UKCC.BITNET

Name: DISRES-L Description: This is the disability research list covering any kind of disability-related research.
Contact: Gary Woodill (fcty7310@ryerson)
Grant Davis (gdavis@utoroise)
Bitnet Address: RYERSON
Internet Address: RYEVM.RYERSON.CA

Name: DOWN-SYN Description:
A listserv mailing list for discussion of Down Syndrome.
Contact: Bill McGarry at (203) 926-6187
Bitnet Address: NDSUVM1
Internet Address: VM1.NODAK.EDU

Name: DSSHE-L Description:
The Discussion group on Disabled Student Services in Higher Education DSSHE-L is a LISTSERV discussiuon group formed to serve as a communication vehicle for those interested in the provision of services to students with diabilities in Higher Education.

Name: EASI Description:
Disability Access to Libraries. EASI (Equal Access to Software and Information) is starting the list to:
1. provide a forum to share questions and answers about how to make libraries more accessible.
2. provide a platform from which to reach libraries which are not yet considering seriously the question of access for users with disabilities.
3. provide a platform from which to lobby vendors of electronic library services to create tools that are already highly acessible.
4. encourage electronic networks and network information services to make their facilities as accessible as possible to users with disabilities.
5. create and provide services to assist libraries and information providers with resources to assist them in becoming more disability accessible.
Contact: Dick Banks rbanks@discover-net.net
Bitnet Address: SJUVM
Internet Address: SJUVM.STJOHN.EDU