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PALS / ALS Websites, Useful Links & info

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Old 01-09-2008, 07:45 PM   #41
BobbyB
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Book

easy access "Library" searches for ALS

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Harvard Library "ALS" search

http://lms01.harvard.edu/F/SXEK2VVXY...%22&adjacent=1

Library of Congress "ALS" search

http://catalog.loc.gov/cgi-bin/Pwebr...&CNT=25&HIST=1

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new Book reference . . .

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Child Neurology, c. 2006, 7th edition
edited by John H. Menkes, Harvey B. Sarnat, Bernard L. Maria
abstract (from pages 187-188)
"In a few families, progressive degeneration of the anterior horn cells and pyramidal tracts appears before age 20 years. . . . transmission is either autosomal dominant or autosomal recessive. . . . Recessive forms of ALS usually have a juvenile onset . . . . The most prevalent form has been mapped to chromosome 2q33 and has been designated ALS2. . . . (is t)he most likely form to be encountered in the pediactric population (and can commence) as early as 3 years of age. . . . Treatment: No treatment is available."

so I ask, do persons with hereditary ALS try rilozule, and if so, is there recognizable benefits???

A table is included that shows fALS divided into five classes lables ALS1, ALS2, ALS3, ALS4 and ALS5.

not all are terminal.


MuonOne
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http://brain.hastypastry.net/forums/...=82&order=desc


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NAVIGATING THROUGH ALS
A website dealing with mid and late-stage ALS issues for PALS, caregivers and service providers.
http://navigatingthroughals.blogspot.com/

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Last edited by BobbyB; 01-10-2008 at 08:58 AM.
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Old 01-09-2008, 08:50 PM   #42
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Ribbon Mary Beth Geise - "The ALS Nurse"



ALS CARE is committed to providing support to patients, their families, and caregivers by means of education and consultations. Living productive, yet challenged lives, ALS patients are educating the medical profession, their caregivers and the world about this disease. It is our mission to assist ALS patients with meeting their unique medical needs. Let us show you how.



ALS has an erratic and progressive nature, so finding answers to your daily issues can be a great challenge. You have landed in the right place.

ALS Care will support you with the ability to meet and handle your diagnosis. Finding the equipment, devices, web sites, physicians, articles . .


While caring for her first ALS patient in 1983, Mary Beth Geise discovered what would become her life's passion: advocacy for the home care needs of those suffering from ALS.

For nearly 22 years, Mary Beth has dedicated her career to this special group and their families. . .


Mary Beth Geise - "The ALS Nurse"

While caring for her first ALS patient in 1983, Mary Beth Geise discovered what would become her life's passion: advocacy for the home care needs of those suffering from ALS. For nearly 22 years, Mary Beth has dedicated her career to this special group and their families. Today, Mary Beth has emerged as a nationally renowned expert on ALS home care.

In 1986, Mary Beth opened a home health agency in Houston, Texas, specializing in ALS care. Her agency hired and trained nurses and PCAs to act as competent and reliable caregivers to ALS families. From routine tasks such as proper exercise and lifting, to the more complex job of tracheotomy care, maintaining ventilator equipment, responding to emergency breathing problems. The challenges of proper nutritional guidance with swallowing difficulties, preparing for a gastrostomy (feeding tubes- PEG) and maintaining bowel programs are just a few of Mary Beth's specialties. Discharge planners, insurance case managers, and social workers often sought out Mary Beth. The success of her work garnered attention in the marketplace, and in 1999 the national firm, Nursefinders, acquired her agency.

Aside from her personal experience both with her agency, and as a nurse herself, Mary Beth has a growing professional involvement with many organizations and institutions. Mary Beth served on the MDA Board in Houston, and has been a speaker for ALSA since 1988. She has traveled the country, and also internationally, acting as a consultant to groups in need of ALS patient care education. Mary Beth's expertise was sought after in 1991 by an American living in Japan with ALS. She worked diligently with the small remote village to "qualify the caregivers" like farmers and fisherman on the proper care for this ventilator-dependent patient. Her work has included consultations with numerous drug companies, in particular, Sanofi-Aventis for Rilutek, the only FDA drug approved to treat ALS. Mary Beth is also much sought after for speaking engagements, most recently presenting to a group of 200 nurses in Medicare/Palmetto, S. C. on Home Care for ALS.

Mary Beth's extensive professional experience is matched with her devotion to the ALS community. (Click here to learn more.)

http://www.alscare.com/
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Old 01-14-2008, 07:20 PM   #43
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Ribbon http://mikebougher.com/



http://mikebougher.com/



Although at 43 years old, I am paralyzed from the neck down and unable to breathe without a ventilator or speak after being afflicted with ALS, please don’t feel sorry for me. I am happier, and more fulfilled than I have ever been. Let me try to give you a glimpse into my life so far.

When I was of an impressionable age, a wise man taught me the phrase “The world is a smorgasbord, but most suckers are starving to death”. This concept became ingrained in me, and I live it every day. I have traveled far, had many diverse experiences, and look back with few regrets.

As my body has weakened to the point of being simply a support system for my brain, I have become more in tune with my soul, the world has more meaning, and my appetite for and ability to comprehend new knowledge has grown. Recently I have developed a passion for digital painting; and have been exploring Astrophysics, Quantum Mechanics, World History, Classical Music from the baroque period, the nature of human consciousness, Physical Anthropology of the Americas, the cultures, music, plights and spirituality of various Native American Nations, and Asian music, religions and philosophy. In the U.S., the blind and disabled library provides a large selection of books on tape via U.S. mail.

I have always been a traveler, and always will be. Because it is now more difficult to travel to distant places, I have begun a journey inward. I am on a quest to move toward the full potential of human consciousness, and achieve a higher awareness of the universe around me. This pursuit has been just as fruitful and fulfilling as any trip to a foreign culture. The souvenirs I bring back are extremely precious, and useful as tools to become a more positive force in this world.

I believe I owe the pleasure that life brings me to living in the present, mindfulness meditation, my solid upbringing, the "Law of Attraction", and the elegant partnership I share with my nurturing wife Jen. It is a beautiful gift to live on this hospitable planet, during this era of rapid scientific discovery. A time when more and more minds are opening to the interdependent reality of our world. We should all cherish every moment.

If you were recently diagnosed with ALS, understand that it is not necessarily the horrible experience that most say it is. From your unique perspective, you may have the ability to see the full beauty and diversity of this life. You have a choice.





When we meet real tragedy in life, we can react in two ways - either by losing hope and falling into self-destructive habits, or by using the challenge to find our inner strength.

-Dalai Lama
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Old 01-15-2008, 10:59 AM   #44
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Link Susan's Path of Promise

Susan's Path of Promise

http://pathofpromise.com/

'Susie's swimmers'
stem cell treatment at eden labs in Belize
stem cell transplant therapy

http://www.edenlaboratories.net/
Belize
Medical Clinic
Eden Laboratories Ltd.
Consejo Shores, Corozal District
Belize, Central America
Telephone: +501.423.1060
Facsimile: +501.423.1043
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Old 01-17-2008, 03:20 PM   #45
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http://www.mountainside-medical.com/...eding-products
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Old 01-17-2008, 04:23 PM   #46
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Link



http://www.independencefund.org/

Foundations that Help Veterans

Independence Fund - has helped equip 8 disabled veterans with iBOTs

iBOT News

Wheelchair Bound Veterans Gain Independence
Couple vows 'fight to the death' to get coverage for wheelchair
Wheelchair is a medical need, judge rules
Judge Recommends Coverage of Stair Climbing Wheelchair for Navy Doctor’s Paralyzed Wife

Veterans

VA Watchdog
U.S. Department of Veterans Affairs
Board of Veteran Appeals
Paralyzed Veterans of America
Sports N Spokes
Paraplegia News (PN)
Disabled American Veterans
DAV Magazine
Stand Up 4 Vets
Veterans of Foreign Wars

Other Forums

CareCure Forums
Wheelchair Junkie


http://www.goibot.com/links.htm
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Old 01-19-2008, 12:48 PM   #47
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Wheelchairs
& Beach Access
http://store.accesstr.com/Page.bok?t...elchairs_index
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Old 03-05-2008, 08:34 AM   #48
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adaptability tips and tricks
Adaptive Controllers: Video Gaming Accessibility
Link: GimpGear

Broadened Horizons' clients often utilize power wheelchairs while struggling to use tools with buttons, levers, knobs, and handles in a world designed around manual dexterity. Opportunities for travel, communications, recreation, education, and employment are severely limited due to the additional complexity of meeting their needs. Those limited by quadriplegia or tetraplegia, cerebral palsy, multiple sclerosis, muscular dystrophy, and Lou Gehrig's disease or ALS find our solutions ideally suited to their needs. However our solutions can also greatly simplify the lives of those with less limitations also; such as paraplegics, those who have suffered a stroke, brain injury, spina bifida, or other disabling disease or injury.


GimpGear
Adaptive Controllers
http://www.broadenedhorizons.com/videogaming.htm
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Old 05-07-2008, 07:14 AM   #49
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John Miller ALS
http://johnmilleralsfund.blogspot.com/
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Old 05-07-2008, 07:59 AM   #50
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http://www.abledata.com/

ABLEDATA provides objective information about assistive technology products and rehabilitation equipment available from domestic and international sources. Although ABLEDATA does not sell any products, we can help you locate the companies that do.
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