SCI Guestbook
Here are comments from the CPN Forum before it was closed in order to
encourage participation at the new newsgroup alt.med.cure-paralysis
Re: MEMBERSHIP NOT REQUIRED! (Randy Cosby)
Keywords: Dragon Dictate
Date: Sat, 03 Feb 1996 12:58:01 GMT
From: Gary Miner ()
I would like additional info on Dragon Dictate. Where can we get the demo
or the software. I have a brother (Orson) who is quadrapledgic due to a
snowmobile accident in February of 95. the family is trying to get him
set up with a computer. He has very limited use of his right hand so
any suggestion on hardware of software would be appreciated.
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Tom Bengaff
Base: Cure Paralysis Now Discussion Forum - PARALYSIS NET NEWS
Re: Cure is inevitable
Keywords: positive
Date: Thu, 23 Nov 1995 02:10:43 GMT
From: Tom Bengaff ()
I agree that a cure is eventually possible and I assume "inevitable" but
with politics, bureaucracy, money and ego standing in the way I'll probably
be 187 when I'm cured. I'm already 40, and a C-5 classic quad since '73.
Good luck right. Tom
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Good Question!!
Base: Cure Paralysis Now Discussion Forum - PARALYSIS NET NEWS
Re: HOW COME IT'S SO QUIET OUT THERE ?
Date: Thu, 11 Apr 1996 22:38:12 GMT
From: Lyn Williams ()
Probably because we're not sure what we're doing yet!!
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Base: Cure Paralysis Now Discussion Forum - PARALYSIS NET NEWS
Re: MTC (Greg Winget)
Date: Fri, 17 Nov 1995 15:31:19 GMT
From: ()
FIRST OF ALL I'D LIKE TO SAY THAT I THINK THIS FORUM AND RESOURCE
"CLEARING HOUSE" IS THE MOST WONDERFUL SYSTEM AROUND. IT HAS
GIVEN SO MANY PEOPLE INCLUDING MYSELF A PLACE TO LEARN AND MEET
PEOPLE. MY QUESTION TO YOU AND OTHERS ON THIS SYSTEM IS THE
FOLLOWING: FOR THE PAST FEW MONTHS I HAVE BEEN DESIGNING AND
GETTING FEEDBACK ON A CORRESPONDENCE PROGRAM FOR PEOPLE WITH
SPINAL CORD INJURIES. THE IDEA IS STRICTLY BASED ON E-MAIL
INTERACTIONS-PRIVATE. I WOULD ACT AS HOST, COMPILING AND SENDING
OUT MAILING LIST TO ALL MEMBERS WHO SUBMIT A BRIEF PROFILE OF
THEMSELVES. THIS WOULD GIVE PEOPLE A CHANCE TO INTERACT WITH
SOMEONE SHARING A SIMILAR INJURY, ENVIRONMENT, REHAB ECT.I WOULD
REALLY LIKE TO GET ADDITIONAL FEEBACK ON THIS IDEA. PLEASE FEEL FREE
TO E-MAIL ME AT
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Response
Base: Cure Paralysis Now Discussion Forum - PARALYSIS NET NEWS
Re: Regeneration Research Breakthrough
Date: Sun, 28 Jan 1996 05:28:31 GMT
From: ()
David, try contacting the International Spinal Cord Injury Center at
http://www.electriciti.com or
e-mail me at
I am in phoenix, Arizona.
Sincerely,
Maurice Azurdia
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Infra-red technology
Base: Cure Paralysis Now Discussion Forum - PARALYSIS NET NEWS
Keywords: quadrapledgic accessibility devices
Date: Wed, 29 Nov 1995 03:01:16 GMT
From: ()
Hi there,
Does anyone have information about infra-red (or other) devices that help
quadrapledgics use
computers?
Appreciatively,
Rebecca
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Re: Infra-red technology
Base: Cure Paralysis Now Discussion Forum - PARALYSIS NET NEWS
Re: Infra-red technology
Keywords: quadrapledgic accessibility devices
Date: Sat, 16 Dec 1995 03:20:47 GMT
From: Greg Winget ()
In the December 19th issue of PC Magazine, Packard Bell advertises a remote
control and
infra-red receptor that can "run your CD-ROM drive, games, and even
telephony features."
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Electric Stimulation Leg Bike
Base: Cure Paralysis Now Discussion Forum - PARALYSIS NET NEWS
Keywords: Electric Stimuation
Date: Mon, 04 Dec 1995 23:25:31 GMT
From: ()
In Christopher Reeve's last interview with Katy Kouric on the Today show
last week they showed him using a electric stimulation leg bike. Does anyone
know who makes it, what is it called, where a person can get one, or if it
is available in Canada?
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Other Alternatives
Base: Cure Paralysis Now Discussion Forum - PARALYSIS NET NEWS
Re: Electric Stimulation Leg Bike
Keywords: Another Alternative
Date: Wed, 20 Dec 1995 01:35:21 GMT
From: ()
As a Canadian I can understand your frustrations in regards to finding
useful information. After returning from doing my rehab at the Craig Hospital
in Denver Co. and then later visiting the Miami Project- Cure for Paralysis
they both stressed "standing". This can be accomplished via a "standing
machine"
in which there are many models available. As an alternative to the leg bike
(which I've tried) standing provides the following benefits: weight bearing,
bowles, bladder, osteoperosis, muscle tone, cardiovascular, and it also offers
a different perspective after spending hours sitting in our wheelchairs.
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Base: Cure Paralysis Now Discussion Forum - PARALYSIS NET NEWS
Re: Electric Stimulation Leg Bike
Keywords: Electric Stimuation FES Ergys TTI
Date: Wed, 03 Jan 1996 19:08:05 GMT
From: Randy Shively ()
In case you are still looking for an Ergys, they used to retail at $18K.
They are/were made by TTI, Therapeutic Technologies Inc., which was in some
serious financial hurt a while ago. I don't know their current financial
condition, or if they even have one.
It works by cycling a 130mA pulse to the three muscle groups: gluts, quads,
and hams. It is able to be used by most paras and quads. It uses a set of
reusable electrodes which almost every patient will need help applying. There
is also a "hot pants" which you can purchase that has the electrodes sewn
into them.
IMHO, the best way to purchase one is to find a used one. A number of people
will buy them with the best intentions for exercise, but then, for some reason
or another, they don't use it. Unless you can get it for a very, very cheap
price,
I wouldn't even consider a Regys. The thing is a dinosaur and very outdated.
If you have any further questions on the Ergys, feel free to email me about it.
I can probably also locate some numbers of people to contact if you need to
speak
with people that have experienced it. I have only used the Ergys w/the
electrodes hooked up on the quads and hams. I'm an a.b. so it isn't the most
comfortable
thing for me to endure.
Good luck...
Randy
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Sam Maddox 's "Spinal Network"
Base: Cure Paralysis Now Discussion Forum - PARALYSIS NET NEWS
Date: Sat, 09 Dec 1995 01:28:13 GMT
From: Xavier Cluysen ()
I'm living in Belgium and looking for Sam Maddox's "Spinal Network". But I've
checked with one of the best bookstore here and they say they cannot have the
book because Sam Maddox is no more living at the address they have.
Is there anybody who knows is present address or a fine bookstore where I
can order it with a credit card ?
Thank you very much.
Xavier.
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Untitled
Base: Cure Paralysis Now Discussion Forum - PARALYSIS NET NEWS
Re: Sam Maddox 's "Spinal Network" (Xavier Cluysen)
Keywords: Response to Spinal Network
Date: Mon, 11 Dec 1995 20:15:47 GMT
From: Betty Ziska ()
This is available by sending Check or Money order to Miramar Communication,
P.O. Box 8987, Malibu, CA 9. Spinal Network soft cover $37.95 US,
wire spiral binding $39.95 US.
You might also inquire about the magazing New Mobility, also published by
Sam Mattox & Barry Corbet. Same address.
Sam is also available on email
If you have questions the phone is
Good Luck
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Thank you very much !
Base: Cure Paralysis Now Discussion Forum - PARALYSIS NET NEWS
Re: Untitled (Betty Ziska)
Keywords: Response to Spinal Network
Date: Thu, 14 Dec 1995 00:06:03 GMT
From: Xavier Cluysen ()
Thanks for the info, Betty. I'm gonna contact him through email
and see if he accepts credit cards (lot easier for me)
Xavier.
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Where you can pick-up "Spinal Network".
Base: Cure Paralysis Now Discussion Forum - PARALYSIS NET NEWS
Re: Sam Maddox 's "Spinal Network" (Xavier Cluysen)
Date: Mon, 25 Dec 1995 09:01:22 GMT
From: Steve Powell ()
I know this is a little late, but I thought it may help others
looking for "Spinal Network". The magazine "New Mobility"
has an e-version located at http://www.newmobility.com/
where you can purchase "Spinal Network" along with many
other informative and entertaining books, via plastic if you
prefer. Just thought I would pass that information along if
there's anyone else interested. BTW, I have a copy of
"Spinal Network" and wouldn't part with it.
Until later,
Steve
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Hospital Stays
Base: Cure Paralysis Now Discussion Forum - PARALYSIS NET NEWS
Keywords: Hospital days
Date: Thu, 21 Dec 1995 00:02:39 GMT
From: Harmon Shade ()
I am looking for information concerning SCI patients and the average number
of days one can anticipate for annual hospital days following SCI. I am
presently working on several Life Care Plans for SCI patients and want to
ensure that I provide the optimum care for them.
Thanks for the assistance.
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Hospital Stays
Base: Cure Paralysis Now Discussion Forum - PARALYSIS NET NEWS
Re: Hospital Stays (Harmon Shade)
Keywords: Hospital days
Date: Thu, 11 Apr 1996 23:21:14 GMT
From: LyN Williams ()
I've had pneumonia several times since I became a c7/t1 SCI in a Car
accident 6 yrs,ago.My first stay was 13 wonderful days but I've
done better last 2 times were 11 & 9 days. LyN
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Spasticity
Base: Cure Paralysis Now Discussion Forum - PARALYSIS NET NEWS
Date: Tue, 26 Dec 1995 20:09:17 GMT
From: ()
Has anyone out there had any experience with severe spasticity? C5-C6 would
like to hear from
anyone who has been able to solve them.
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response to spasticity
Base: Cure Paralysis Now Discussion Forum - PARALYSIS NET NEWS
Re: Spasticity
Date: Wed, 27 Dec 1995 00:06:06 GMT
From: ()
I am a c4-c5. I have some (not too severe) usually worse time in AM.
Using 80 mg Baclofen daily and streching/ranging. Works OK, but a
tremendous amt. of back stiffess. Would
appreciate the info if you find something helpful!!
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Spasticity with SCI
Base: Cure Paralysis Now Discussion Forum - PARALYSIS NET NEWS
Re: response to spasticity
Date: Thu, 28 Dec 1995 02:10:26 GMT
From: ()
Sophie (my wife) has a lot of stiffness and spasm in her chest, shoulders,
neck & upper back. In the last 3 months she has had some relief with increasing
the Baclofen from 80mg to 100mg daily. But lately the spasms have come back.
We are now trying 110mg of Baclofen to see what happens. Sophie is presently on
a waiting list to have a Baclofen Pump installed, and it should be
done sometime in January 1996. Has anyone had any experience with the Pump.
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Restless Legs
Base: Cure Paralysis Now Discussion Forum - PARALYSIS NET NEWS
Keywords: legs, restless
Date: Fri, 05 Jan 1996 03:02:45 GMT
From: Lori Denham ()
I am posting this on behalf of a friend who has recently become paralyzed
(classified as an
incomplete spinal injury.) My friend currently has "restless legs" and wants
to find out more about
this condition. It seems that very little information is available. Has
anyone had experience with
this who is willing to share information or good resources/literature on the
subject? Thanks in
advance for responses!
Regards,
Lori Denham
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Has anyone found a way to ameliorate paresthesias?
Base: Cure Paralysis Now Discussion Forum - PARALYSIS NET NEWS
Keywords: Need treatment to Ameliorate Paresthesias
Date: Fri, 05 Jan 1996 19:59:28 GMT
From: Julia Robbins ()
Hi All - This request is on behalf of someone who does not have internet
access at this time. She suffered a partial transection at T3 due to cryptic
AV malformation. Surgical intervention 5 yearsago but still technically
paraplegic.
Has Brown Sequard Syndrome and suffers from burning paresthesias from waist to
toes if sitting. She urgently wants to know if anyone has found a way to
ameliorate the paresthesias-- either through conventional or alternative
medicine. Any help you can give is greatly appreciated. Please respond to
me directly : . TIA. -
Julia
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Neurologist needed for second opinion
Base: Cure Paralysis Now Discussion Forum - PARALYSIS NET NEWS
Date: Tue, 09 Jan 1996 23:18:06 GMT
From: Carri Bennet ()
I am looking for a neurologist to evaluate and give a second opinion on my
father
who is currently in Pensacola, Florida. Can anyone reccommend someone in or
near
that area?
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Re: 2nd Opinion
Base: Cure Paralysis Now Discussion Forum - PARALYSIS NET NEWS
Re: Neurologist needed for second opinion (Carri Bennet)
Date: Sat, 13 Jan 1996 03:28:17 GMT
From: GW ()
Carri,
I tried to reach you by email to ask whether this is an
SCI problem and a few more specifics. Please let us know. Thanks
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Chronic pain with paralysis
Base: Cure Paralysis Now Discussion Forum - PARALYSIS NET NEWS
Keywords: cordio equinas chronic pain
Date: Thu, 25 Jan 1996 21:26:29 GMT
From: ()
Hi,
I hope this is the right place to post this. If not, my apologies then...
My father had surgery using an epidural spinal and developed cordio equinas
syndrom after decompression surgery for a spinal blood clot and remains
paralyzed
4 months later. This we can cope with, but along with the paralysis is a
horrendous
leg pain. The initial surgery was for an artery replacement to increase
blood flow
to the legs. We have tried a pump to give morphine at will to the spine and
a sympathetic nerve cut, but nothing to date has worked. Does anyone have
experience with a similar case? You can email me at .
Yours truly,
Lewis Polk
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Steroids and Paralysis
Base: Cure Paralysis Now Discussion Forum - PARALYSIS NET NEWS
Keywords: steroid paralysis
Date: Wed, 31 Jan 1996 03:11:54 GMT
From: ()
Thanks in advance!
Is anyone aware of research in treating paralysis with steroids?
Any idea of where to look for any info regarding this idea?
Please respond here or email me. Thanks again
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05/18/96 at 01:39 PM
Robin Perez
Comments: I am looking for any information on a story I saw on the Learning Channel or The Discovery Channel. This story dealt with a young woman with paralysis below the waist. They were trying a device which used electrical impulses to stimulate her leg and lower back muscles to enable her to walk. I have not been able to find any more information on the story. I would appreciate any input. Thank You
05/08/96 at 08:03 AM
Georges
Comments: Concerning the "Head and Spinal Cord Injury Center" and the works of Ramirez, I ask myself if there is anyone on the web who has gone there and has seen anyone that has done the controversed surgery of this Ramirez...
05/01/96 at 03:44 PM
T.Y.CHI
Comments: Sirs, Happy to learn many thing from you. I am a T10 spinal cord completed injured handicapped, are going to make my homepage in Taiwan. Could I use your address as align in my homepage? please kindly advise, if it is not good. Thank you very much. With my best regards, May 2, 1996 T.Y.CHI
04/25/96 at 10:23 PM
Jeff Seibert
Comments: My mother is 73 years old. A survivor of the Holocaust, she found herself stripped of her life once again when on June 24, 1994 she got on the wrong elevator at the right time. The elevator plummetted in freefall for 5 floors. Of the nine passengers on the elevator, all Holocaust survivors returing from a social gathering, two died as a result of their injuries. Both my parents suffered multiple spinal cord fractures and both are currently paralyzed from the waist down. It is cruel irony that what Hitler could not do in Germany, some incompetent elevator mechanic almost accomplished in Cincinnati, Ohio. Go figure! The most prominent problem is the chronic pain that my mother sufferes from each moment of everyday. This dispite rigorous care including drugs, therapy, accupuncture, holistic healining -- you name it, short of cordotomy. I am interested in alternative approaches that have pr
04/25/96 at 08:50 PM
Jerry Robinson
Comments: I'm an electronic engineer looking to communicate with group doing research with electronic prosthesis or electronic stimulation systems for SCI patients. Looking to participate with such a group. I have considerable experience in electronic control design. Please E-Mail. THANKS
04/02/96 at 10:44 PM
Ralph Greeley
Comments: Good start- I'm aC-5 of 21 yrs living alone in own home. Have you checked out that group in Mexico doing cell regeneration?
04/01/96 at 06:11 PM
Teri Michaud --
Comments: Female C5/6 20 years post injury,at 31 I had a baby girl (5 1/2 years old now).More reseach needed in- cluding Women! But in the meantime get on with your life. The more famous athletes & actors who are in- jured with a spinal cord injury the more publicity SCI & Research will get funded, hopefully.
03/24/96 at 07:07 PM
TERRY SIMS --ALAN
Comments: SPINAL CORD INJURY C4,5,6 COMPLETE 1980,3 MONTHS HOSPITAL,6 WEEKS REHAB HOSPITAL,LEFT WALKING TO EVERYBODY'S DISBEIF, IT TOOK FIVE YEARS TO LEARN TO WALK GOOD,CURRENTLEY WORKING IN THE CONSTRUCTION BUSINESS,I AM BOTHERED BY CRONIC PAIN AND MUSCLE SPASMS,I HAVE TO KEEP MY CONCENTRATION ON A EXTREMELY HIGH LEVEL TO DO WHAT I DO,I TAKE A ANTIDEPRESANT DRUG CALLED TRIAVIL FOR PAIN, I AM INTERESTED IN UPDATES ON SPINAL CORD INJURY CURES OR TREATEMENTS,TERRY SIMS 4004 FAITH RD. WICHITA FALLS,TX 76308
03/19/96 at 08:48 PM
Donald C. Sluter
Comments: I am a T-3/T-4 functionally complete parapalegic who is 3 years post-injury. I am interested in the ongoing research and am trying to figure out a way to make a difference.
03/19/96 at 07:09 PM
David
Comments: Hello! Welcome to this small little nook regarding SCI research. I welcome your input, if you'd like. Dr. Young has done a great job so far, and other essays may soon be posted. Please let me know if you find aspects of these postings useful as well as preferred topics. dave ps please support the CURE PARALYSIS NOW website - w where I hope to stick this stuff eventually. I can be reached 'live' on the net, at times, via the chess server on the links page.
03/08/96 at 11:55 AM
William Porter
Comments: My 16 year old step-daughter was in a car accident Sept. 24, 1995. She suffered a broken pelvis and a trans-sected aorta. Due to the lack of blood flow during the aortic repair,she suffered an ischemic spinal cord injury. Her recovery has been good and after about 3 1/2 months of hospitalization shes home. Her spinal injury begins in the L1-2 region. She hass full sensory perception, and some movement in most of the muscle groups in her leg. The problem is that the movement is non-functional. We are interested in expermental/alternative medicines to futher her recovery. We seem to have reach a platue we the convential rehab therapies.
03/03/96 at 08:05 PM
David Kammeyer
Comments: I am a C6-C7 quad. and am trying to keep current in latest treatments. It has been 10 months since I was hurt.
03/03/96 at 04:34 PM
Greg Winget ,
Comments: Dave, You're off to a GREAT start! Keep up the good work! Greg
02/14/96 at 12:24 AM
Jim Ayers
Comments:
01/25/96 at 02:20 PM
Sigmund --Frued
Comments: Test