Bob from Houston
SCI Network
Newsletter 5/3/99
Issue #15
Contents:
***Topics for this Week and Weekend
***News Articles
-Veterans Wheelchair Games Set for Puerto Rico June
21-26, 1999
-Gene Therapy For Pain
-Vitamin D Said Important for Bones
-The Department of Transportation proposing to amend
its rules
implementing the Air Carrier Access Act of 1986.
-Gunshot victims struggle with physical recovery
***New Web Sites:
<A HREF="http://www.techconnections.org/">Tech
Connections: Welcome to Tech Connections
</A>
***I have aquired a lot of SCI web sites and other related
sited on file if you want. Just send me an e-mail asking
for the list of sites and I'll send them to you.
Thanks....
***FunTime Section: Jokes
If you have any comments or sugestions for the SCI Network Newsletter,
please e-mail BHost Rick. Also, if you have articles, web sites, and/or other
information that you think others might benifit from, just send it on over
and I'll add it to the Newsletter. This is the America Online Community SCI
Network Newsletter which means that everyone can contribute. Thanks...
BHost Rick, BHostLindy, BHostTater, and BHostSNOT
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-
Here are the topics for ALL the SCI (spinal cord injury) groups. Should
anyone have trouble finding us or if you have any questions just use the
links below. To get to these rooms without the links do "Keyword" Better
health, chat rooms.. Thanks and we will see ya in group:-)
<A HREF="aol://2719:3-691-Mutual%20Support%20Room">Mutual Support Room</A>
<A HREF="mailto:BHostTater(AT)aol.com">BHostTater</A>
<A HREF="mailto:BHostSNOT(AT)aol.com">BHostSNOT</A>
Wednesday May 5th 9:00 pm ET
Topic: TBA
************************************************************
<A HREF="aol://2719:3-235-Equal%20Access%20Cafe">Equal Access Cafe</A>
<A HREF="mailto:BHostRick(AT)aol.com">BHostRick</A>
<A HREF="mailto:bhostlindy(AT)aol.com">BHostLindy</A>
Friday May 7th 11:00 pm ET
Topic: TBA
*************************************************
<A HREF="aol://2719:3-235-Equal%20Access%20Cafe">Equal Access Cafe</A>
<A HREF="mailto:BHostRick(AT)aol.com"> BHostLindy</A>
<A HREF="mailto:BHostRick(AT)aol.com">BHostRick</A>
Saturday May 8th 10:00 pm ET
Topic: TBA
*************************************************
News Stories
Veterans Wheelchair Games Set for Puerto Rico June 21-26, 1999
WASHINGTON, April 30 /PRNewswire/ -- More than 600 veterans from across the
United States, Puerto Rico and Great Britain are expected to compete in the
19th National Veterans Wheelchair Games in Puerto Rico, June 21-26.
The Games, the largest annual wheelchair sporting event in the United
States, are presented by the Department of Veterans Affairs (VA) and the
Paralyzed Veterans of America (PVA). The competition is open to all U.S.
military veterans who use wheelchairs due to spinal cord injury, certain
neurological conditions, amputations or other mobility impairments. The San
Juan, P.R., VA Medical Center will host the Games this year.
Eligible veterans who have never before competed in the Games or in
wheelchair sports are especially encouraged to participate. While this event
has produced world-class wheelchair athletes, for many newly injured
veterans it is their first exposure to wheelchair sports.
``We at VA want to go beyond treating American's injured veterans by healing
them in our hospitals and sending them back to their homes,'' said Secretary
of Veterans Affairs Togo D. West Jr. ``We hold national sports and
recreational events such as these Games to introduce our patients to an
active and healthy lifestyle after injury. We seek to give them the fuel to
regain their self-confidence and to overcome new challenges.''
``The Games are so much more than an athletic event,'' said PVA National
President Homer S. Townsend. ``Many participants claim that the Games
changed their lives, reintroducing them to their forgotten self-esteem and
confidence. The Games reminded them of their abilities and distanced them
from their disabilities, both in sports and in the many other daily
challenges faced in life.''
In this year's events, veterans will go for the gold in track and field,
swimming, basketball, weightlifting, softball, airguns, quad rugby, bowling,
table tennis, archery, a wheelchair rally, and wheelchair slalom.
The 19th National Veterans Wheelchair Games will be kicked off June 21 by
the 1999 Disabled Sports, Recreation and Fitness Expo -- a gathering of
suppliers of products or services related to the health, well being, sports
and recreational needs of individuals with disabilities.
VA is a recognized leader in rehabilitation, with sports and recreational
therapy programs at each of its 172 medical centers. PVA, a national
veterans service organization chartered by Congress, has for more than 50
years served the needs of its members, all of whom have catastrophic
paralysis caused by spinal cord injury or disease.
SOURCE: U.S. Department of Veterans Affairs
*****
Gene Therapy For Pain
NIH scientists are attacking chronic pain with a novel form of gene therapy
that targets the spinal cord. Though still in the animal testing stage, this
approach has overcome one of the major obstacles to gene therapy as a way to
manipulate spinal cord function. Rather than injecting genes directly into a
localized area of the spinal cord, the pain-relieving gene is introduced
into the sheath of tissue that surrounds the cord. From that strategic
location, the gene can pump out its product and bathe many nerves, thus
extending the range of its pain-numbing effect. The investigators hope that
this simplified approach can be used to generate a variety of products in
the tissue surrounding nerves, including factors that could stimulate new
nerve growth.
The study, carried out by scientists from the National Institute of Dental
and Craniofacial Research (NIDCR) and the University of Pennsylvania, was
reported in the May 1 issue of Human Gene Therapy.
"We are totally pumped up that this approach is working in an animal model,"
said Dr. Mike Iadarola, chief of NIDCR's Neuronal Gene Expression Unit. "The
animal studies have shown us that genes are readily taken up by the
connective tissue cells that surround the central nervous system. So, given
the right gene, our approach has application to a broad range conditions,
from pain control to spinal cord injury and disorders like multiple
sclerosis and Parkinson's disease."
In the study, investigators used an adenovirus--similar to a cold virus-- to
deliver the beta-endorphin gene to the rat spinal cord. The virus particles
were injected into the spinal fluid, where they were readily taken up by the
protective sheath of connective tissue, called the pia mater, which
surrounds the cord. Within 24 hours the sheath cells began secreting
beta-endorphin, one of the body's natural sedatives for alleviating pain.
"The incredible simplicity and relative noninvasiveness of this approach
provides a new frame of reference for gene therapy of the nervous system,"
said co-author, Dr. Alan Finegold, previously with NIDCR's Pain and
Neurosensory Mechanisms Branch and now in the private sector.
The spinal cord was selected as the target for the beta-endorphin gene, not
only because of its ease of access, but also because it is the first
processing point for relaying pain signals to the brain, and pain can be
effectively controlled at this location. The idea was to have beta-endorphin
block pain signals before they reached the brain, where pain perception
occurs.
The researchers observed that beta-endorphin levels in the spinal fluid
increased nearly 10-fold following a single injection of virus. Cellular
analysis confirmed that sheath cells, not spinal cord neurons, were the
source of beta-endorphin.
To determine if the method had a therapeutic effect, the investigators used
the rat "hindpaw" model for evaluating pain response. It is based on the
time that elapses before a rat voluntarily pulls its paw away from a heat
lamp. The system allows a rat to be tested for the normal pain response in
one paw and the so-called "hyperalgesic" response in the other paw, which
has been inflamed by injection of an irritant. This latter type of
super-sensitive pain results in rapid paw withdrawal and is used as a model
for the chronic pain of cancer or arthritis.
The rats responded to beta-endorphin by exhibiting a delayed response in
pulling the inflamed paw away from the heat source, a sign that the
hyperalgesic pain sensation was reduced. An added bonus was the observation
that the non-inflamed paw had a normal withdrawal response. This points not
only to a lack of toxicity from the treatment procedure but also to a
selective therapeutic effect for beta-endorphin. The results are similar to
a person getting relief from chronic cancer pain, yet not losing the normal
sense of feeling to react to painful stimuli. The reason for this
distinction is not completely understood, but scientists feel that
inflammation may help activate receptors on the affected nerves, making them
more responsive to the blocking effect of beta-endorphin.
Development of this novel method evolved from some preliminary trial and
error testing. Initial attempts were aimed at injecting virus directly into
neural tissues.
"We discovered early-on that brain and spinal cord were not a hospitable
environment for direct injection of virus," said Dr. Iadarola. "There are
physical barriers that prevent the virus from infiltrating the space between
the neurons, keeping any beneficial effects very localized. We shifted our
approach to the spinal fluid, which we thought would be an excellent medium
to expose a wide swath of neurons to the therapeutic virus."
What they observed however, was the protective sheath of connective tissues
that coats the spinal cord acted like a sponge, soaking up the virus and
preventing direct contact with nerve tissue. What initially appeared as an
obstacle turned out to be the makings of a new approach for gene therapy to
the nervous system. Although the nerve cells could not be made to
effectively take up the gene, they wound up being exposed to beta-endorphin
that was produced by neighboring sheath cells.
As with other studies that have used adenoviruses to deliver genes, the
effects of beta-endorphin were not permanent. Production peaked after 3 - 7
days and tailed off dramatically by day 15. However, the investigators are
optimistic that improvements in vector design will result in a single
injection that provides long-term gene expression, not only of
beta-endorphin, but genes to treat a variety of spinal cord and brain
disorders.
Working with Drs. Iadarola and Finegold was Dr. Andrew Mannes from the
University of Pennsylvania, Department of Anesthesiology.
*****
Vitamin D Said Important for Bones
Vitamin D Said Important for Bones
CHICAGO (AP) _ Many post-menopausal women are still unaware of
the importance of vitamin D in preventing bone fractures,
researchers reported today in the Journal of the American Medical
Association.
Vitamin D helps the body use calcium to maintain strong bones,
but public health messages promoting calcium may have obscured
vitamin D's importance, said Dr. Meryl LeBoff, lead author and
director of the skeletal health and osteoporosis program at Brigham
and Women's Hospital in Boston.
Loading up on calcium without adequate vitamin D could still
leave bones at risk.
The researchers compared 30 women with hip fractures admitted to
the hospital between 1995 and 1998 with 68 similar women who did
not have fractures.
Vitamin D levels were significantly lower, on average, in the
women with broken hips than in the other women, the researchers
found. Half of the broken-hip group had vitamin D deficiencies,
researchers said.
Common sources of vitamin D include eggs and fortified milk and
cereal. The body also produces it as a result of exposure to
sunlight.
*****
-- Technology, Transportation, and Access
for Persons with Mobility Impairments ----
The Department of Transportation is proposing to amend its rules
implementing the Air Carrier Access Act of 1986 to lift the existing cap on
the amount of compensation airlines would have to pay to passengers for loss
or damage of their wheelchairs and other assistive devices. Currently the
air carriers never have to pay more that $2500 to repair or replace damaged
wheelchairs, even though there is no real notice to passengers of this cap,
and in spite of the fact that many chairs are worth several times that
amount. Wheelchairs should not be treated like luggage, and this new rule
would result (I think) in the airlines using more care in handling
wheelchairs, etc.
The DOT is seeking comments. I am repeating the notice and address for
comments below:
[Federal Register: February 17, 1999 (Volume 64, Number 31)]
[Proposed Rules]
[Page 7833-7834]
>From the Federal Register Online via GPO Access [wais.access.gpo.gov]
[DOCID:fr17fe99-27]
-----------------------------------------------------------------------
DEPARTMENT OF TRANSPORTATION
14 CFR Part 382
[Docket OST-99-5099; Notice No: 99-2]
RIN 2105-AC77
Nondiscrimination on the Basis of Disability in Air Travel;
Compensation for Damage to Wheelchairs and Other Assistive Devices
AGENCY: Department of Transportation, Office of the Secretary.
ACTION: Notice of Proposed Rulemaking.
-----------------------------------------------------------------------
SUMMARY: The Department is proposing to amend its rules implementing the Air
Carrier Access Act of 1986 to lift an existing cap on the amount of
compensation airlines would have to pay to passengers for loss or damage of
their wheelchair users and other assistive devices. The proposal is
intended to provide additional relief to passengers using expensive
assistive devices when they are destroyed or seriously damaged in the course
of airline travel.
DATES: Comments are requested by May 18, 1999. Late-filed comments will be
considered to the extent practicable.
ADDRESSES: Comments should be sent, preferably in triplicate, to Docket
Clerk, Docket No. OST-99-5099, Department of Transportation, 400 7th Street,
S.W., Room PL-401, Washington, D.C., 20590. Comments will be available for
inspection at this address from 10:00 a.m. to 5:00 p.m., Monday through
Friday, and are also viewable through the dockets link on the Department's
web site (www.dot.gov). Commenters who wish the receipt of their comments to
be acknowledged should include a stamped, self-addressed postcard with their
comments. The Docket Clerk will date-stamp the postcard and mail it back to
the commenter.
FOR FURTHER INFORMATION CONTACT: Robert C. Ashby, Deputy Assistant General
Counsel for Regulation and Enforcement, Department of Transportation, 400
7th Street, S.W., Room 10424, Washington, D.C., 20590. (202) 366-9306
(voice); (202) 755-7687 (TDD); 202-366-9313 (fax); bob.ashby(AT)ost.dot.gov
(e-mail).
SUPPLEMENTARY INFORMATION: This NPRM concerns the issue of compensation
for loss of or damage to wheelchairs or other assistive devices. The
current regulation provides that
With respect to domestic flights, carriers shall not limit liability for
loss, damage or delay concerning wheelchairs or other mobility aids to any
amount less than twice the liability limits established for passengers'
luggage under 14 CFR Part 254. (14 CFR Sec. 382.43(b)).
This means that carriers can refuse to pay compensation exceeding $2,500 for
loss of or damage to wheelchairs or other assistive devices, given the
present $1,250 liability limit for luggage that Part 254 permits carriers to
impose in domestic transportation. People with disabilities have complained
that this does not provide adequate compensation for the loss of or serious
damage to expensive equipment, such as power wheelchairs that may cost
$15,000 or more. Given that a passenger whose wheelchair is lost or
seriously damaged will lose his or her mobility at the destination, people
with disabilities believe that the Department should require airlines to do
more, such as pay full compensation for the loss and make repair or loaner
service available.
The Department considered this issue in the original Air Carrier Access Act
(ACAA) rulemaking (see 55 FR 8038; March 6, 1990). In response to similar
disability group comments at that time, the Department responded that
requiring carriers to pay full replacement value did not sufficiently
recognize the ability of passengers to purchase insurance for such expensive
items. Consequently, the final rule permitted airlines to cap their
liability at twice the liability limit for general baggage.
Nevertheless, the Department believes it may be useful to reopen the issue
at this time. The Department believes, based on anecdotal information, that
the majority of wheelchairs used in air travel are manual wheelchairs, many
of which cost less than $2500. However, other travelers use power
wheelchairs, which typically are stowed in checked baggage and many of
which, if lost, damaged, or destroyed, could cost substantially more than
$2500 to repair or replace (e.g., over $13,000 in one recent case brought to
our attention). Consequently, there may be relatively few instances of
wheelchair loss or damage that would be affected by the proposed rule
change, limiting cost exposure to airlines. However, the proposed rule would
mitigate the potentially severe financial hardship to individuals whose
expensive wheelchairs are lost or damaged. We seek comment on need for
raising or eliminating the current cap on carrier liability for damage to
wheelchairs.
We also seek comment on whether additional regulatory guidance is necessary
on how compensation should be calculated (e.g., depreciated value vs.
replacement cost). In addition, the Department seeks comment on whether it
is desirable and practical to include other requirements, such as a
requirement that airlines provide a "loaner" device or ensure the repair of
wheelchairs or other assistive devices that have been damaged in transit.
This NPRM is intended to be a vehicle for comment on all these issues. The
Department has not determined what, if any, changes to make in its rules.
In connection with this NPRM, we request that interested parties, including
disability groups and airlines, provide information on the following points,
which will help us to evaluate the necessity for rulemaking and the
potential costs of a rule:
(1) The number of domestic passenger complaints (including letters of
phone
calls, "Mishandled Baggage Reports,"
[[Page 7834]]
and claims for compensation) about lost, damaged, or destroyed wheelchairs
or other assistive devices;
(2) The number of such complaints in which passengers assert that their
monetary loss (e.g., the cost of repair or replacement) would exceed $2500;
(3) The average amount by which assertions of passengers' monetary losses
exceeded $2500; and
(4) The availability and cost of insurance for expensive wheelchairs and
other assistive devices.
We also seek information about the need, design, costs, and logistics of a
"loaner" system.
Regulatory Analyses and Notices
This NPRM does not propose a significant rule under Executive Order 12866 or
a significant rule under the Department's Regulatory Policies and
Procedures. The Department does not currently have data allowing it to
estimate the probable cost of the rule. The preamble asks for data that, if
provided, should allow the Department to make a reasonable estimate of the
costs of any final rule based on this proposal.
The Department certifies that this rule, if adopted, would not have a
significant economic effect on a substantial number of small entities. The
basis for this statement is the probability that the overall national annual
costs would not be great. Nevertheless, the Department seeks comment on
whether there are impacts on small entities the Department should consider,
and what those impacts are. If comments provide information that there are
significant small entity impacts, the Department will provide a regulatory
flexibility analysis at the final rule stage. The Department does not
believe that there would be sufficient Federalism impacts to warrant the
preparation of a Federalism Assessment.
List of Subjects in 14 CFR Part 382
Aviation, Individuals with disabilities.
Issued this 8th day of February, 1999, at Washington, D.C.
Rodney E. Slater,
Secretary of Transportation.
For the reasons set forth in the preamble, the Department proposes to amend
14 CFR part 382 as follows:
1. The authority citation for 14 CFR part 382 is proposed to continue to
read as follows:
Authority: 49 U.S.C. 41702, 41705, and 41712.
2. In Sec. 382.43, paragraph (b) is proposed to be revised to read as
follows:
Sec. 382.43 Treatment of mobility aids and assistive devices.
* * * * *
(b) With respect to domestic transportation, the baggage liability limits of
14 CFR part 254 do not apply to liability for loss, damage, or delay
concerning wheelchairs or other asssistive devices.
* * * * *
[FR Doc. 99-3760 Filed 2-16-99; 8:45 am]
BILLING CODE 4910-62-P
--HandiRide-L is provided as a collaborative effort by HandiNet,Inc., Mobility On Wheels, Inc. and WHRO Public Telecommunications.
*****
Gunshot victims struggle with physical recovery
RELATED VIDEO Medical Correspondent Rhonda Rowland looks at these victims of violent crime, their physical scars and their struggle to recover.
Windows Media 28K 80K
April 29, 1999 Web posted at: 5:05 p.m. EDT (2105 GMT)
(CNN) -- The school shooting in Littleton, Colorado, has drawn attention to the number of deaths by gunshot in the United States -- more than 34,000 in 1996, according to the Centers for Disease Control and Prevention.
Those who survive a gunshot injury face an immense struggle to rebuild their lives that largely goes unseen by the perpetrators.
Fourteen-year-old Crystal Barnes and teacher Lynette Thetford were victims of the much-publicized school shooting in Jonesboro, Arkansas. They have spent a good deal of the past year recovering both physically and emotionally from their injuries.
"I was rubbing my stomach and I just started crying because I have this big scar there now that I didn't used to have, and it upsets you to know you're not like you were before," Thetford said.
Most shooting victims are less famous.
Bran Pace was one of 20 people shot in Baltimore over a weekend last December. Before the shooting he was a dancer touring with a Broadway musical company. Now he is a paraplegic.
Motor vehicle crashes still cause the most spinal cord injuries, but violence -- primarily with guns -- has overtaken falls and sports as the No. 2 cause.
Questions??? If you can, please drop these people a note. They need our help.
***** Members of the Week:
If you would like to put your bio sketch in the Newsletter, please e-mail it to me and I'll put it in. Tell your story and a personal quote or two...
------------------------------------------------------------------------------ ------------------------------------
*****I have aquired a lot of SCI web sites and other related sited on file if you want. Just send me an e-mail asking for the list of sites and I'll send them to you. Thanks....
FunTime Section: Jokes
Y2K Bug <A HREF="http://www.angelfire.com/co/mountainboy/images/Y2Kbug.gif">Y2Kbug.gif at www.angelfire.com </A>
This site has lots of animated graphics, jokes and fun. <A HREF="http://www.wirefire.com/seakle/default.html">Announcing jokes and fun at Eakle's family fr... </A>
<A HREF="http://www.callahanonline.com/">Cartoon humor lives at Callahan Online </A>
Some Actual Signs
In the front yard of a funeral home, "Drive carefully, we'll wait."
On an electrician's truck, "Let us remove your shorts."
Outside a radiator repair shop, "Best place in town to take a leak."
In a nonsmoking area, "If we see you smoking, we will assume you are on fire and take appropriate action."
On a maternity room door, "Push, Push, Push."
On a front door, "Everyone on the premises is a vegetarian except the dog."
At an optometrist's office, "If you don't see what you're looking for, you've come to the right place."
On a taxidermist's window, "We really know our stuff."
On a butcher's window, "Let me meat your needs."
On a fence, "Salesmen welcome. Dog food is expensive."
At a car dealership, "The best way to get back on your feet -- miss a car payment."
Outside a muffler shop, "No appointment necessary. We'll hear you coming."
In a dry cleaner's emporium, "Drop your pants here."
On a desk in a reception room, "We shoot every 3rd salesman, and the 2nd one just left."
In a veterinarian's waiting room, "Be back in 5 minutes. Sit! Stay!"
At the electric company, "We would be delighted if you send in your bill. However, if you don't, you will be."
In a Beauty Shop, "Dye now!"
On the side of a garbage truck, "We've got what it takes to take what you've got." (Burglars please copy.)
In a restaurant window, "Don't stand there and be hungry, come in and get fed up."
Inside a bowling alley, "Please be quiet. We need to hear a pin drop."
In a cafeteria, "Shoes are required to eat in the cafeteria. Socks can eat any place they want."
===================================================
I am hereby officially tendering my resignation as an adult. I have decided I would like to accept the responsibilities of a 6 year old again.
I want to go to McDonald's and think that it's a four star restaurant.
I want to sail sticks across a fresh mud puddle and make ripples with rocks.
I want to think M&Ms are better than money, because you can eat them.
I want to play kickball during recess and paint with watercolors in art.
I want to lie under a big Oak tree and run a lemonade stand with my friends on a hot summers day.
I want to return to a time when life was simple. When all you knew were colors, addition tables and simple nursery rhymes. But that didn't bother you, because you didn't know what you didn't know and you didn't care. When all you knew was to be happy because you didn't know all the things that should make you worried and upset.
I want to think that the world is fair. That everyone in it is honest and good. I want to believe that anything is possible.
Somewhere in my youth...I matured and I learned too much.
I learned of nuclear weapons, war, prejudice, starvation and abused children. I learned of lies, unhappy marriages, suffering, illness, pain and death.
I learned of a world where men left their families to go and fight for our country, and returned only to end up living on the streets...begging for their next meal. I learned of a world where children knew how to kill...and did!!
What happened to the time when we thought that everyone would live forever, because we didn't grasp the concept of death?
When we thought the worst thing in the world was if someone took the jump rope from you or picked you last for kickball?
I want to be oblivious to the complexity of life and be overly excited by little things once again. I want to return to the days when reading was fun and music was clean. When television was used to report the news or for family entertainment and not to promote sex, violence and deceit.
I remember being naive and thinking that everyone was happy because I was. I would walk on the beach and only think of the sand between my toes and the prettiest seashell I could find. I would spend my afternoons climbing trees and riding my bike.
I didn't worry about time, bills or where I was going to find the money to fix my car. I used to wonder what I was going to do or be when I grew up, not worry about what I'll do if this doesn't work out.
I want to live simple again. I don't want my day to consist of computer crashes, mountains of paperwork, depressing news, how to survive more days in the month than there is money in the bank, doctor bills, gossip, illness and loss of loved ones. I want to believe in the power of smiles, hugs, a kind word, truth, justice, peace, dreams, the imagination, mankind and making angels in the snow. I want to be 6 again.
Author Unknown
*****
Disclaimer: The thoughts, ideas, and suggestions presented in this publication are for your information only. Please consult a health care provider before beginning any new medications, nutritional plans, or any other health related program. The SCI Network does not assume any responsibilty for individual member's actions.
