Primary Lateral Sclerosis Information and Resources

PLS Journal

Assistive Technology: AKA Helpful Stuff

All Underlined Text Are Links to Other Web Sites

The Neuromuscular Disorders Research Laboratory - Northwestern University

The National Organization for Rare Disorders (NORD)

NORD is not a government agency.  NORD is a non-profit, voluntary health agency that exists to serve rare-disease patients and their families.

NORD Physicans Guide to Primary Lateral Sclerosis

Order copies for your Physicians and other medical professionals:  send an e-mail to orphan@rarediseases.org or call NORD at (203) 744-0100.

(P. Shaw, Nat Genet 2001;29 (2):103-4.)

Robert Packard Center for ALS Research at Johns Hopkins

About PLS - What is it?  How Does PLS Differ From ALS in Appearance?  How common is PLS?

 

Click on picture at right to see the different nerve tracts affected in PLS and ALS.

The National Institute of Neurological Disorders and Stroke (NINDS) Primary Lateral Sclerosis Information Page

The mission of NINDS is to reduce the burden of neurological disease - a burden borne by every age group, by every segment of society, by people all over the world.

Exploring Spasticity

Spasticity is a physical condition that occurs when certain nerve signals do not reach muscles because of injury or disease that affects certain parts of the brain or spinal cord. Spasticity is characterized by tight, stiff muscles that make movement, especially of the arms or legs, difficult or uncontrollable.

Exploring Spasticity is an educational program designed to raise awareness of spasticity, bring those who are affected together to share their personal stories and coping strategies, and empower patients and caregivers to seek treatment.

WE MOVE - Spasticity

WE MOVE is one of the Internet's most comprehensive resource for movement disorder information and education and the only organization of its kind. Since 1991, this not-for-profit organization has been educating and informing patients, professionals and the public about the latest clinical advances, management and treatment options for neurological movement disorders.

Spastic Paraplegia Foundation, Inc. (SPF)

SPF Shopping Mall

Every Purchase Raises $$ for Research

The SPF is the only non-profit organization in the Americas dedicated exclusively to neurodegenerative disorders called Primary Lateral Sclerosis (PLS) and Hereditary Spastic Paraplegia (HSP).

Synapse - the on-line newsletter

The focus of this quarterly newsletter will be on current advances in medical research and treatment, regional meeting reports, calendars of future meetings, help for caregivers and suggestions on how to enhance living with our diseases.

The Primary Lateral Sclerosis Website

PLS Web Site is a new *Automatic Daily Updated News Page* that is programmed to show the latest NEWS for Stem Cell, PLS, ALS and other Motor Neuron Diseases.

 

PLS/HSP/ALS Data Base & Guest Book:  This PLS Patient DATA BASE.  Because PLS is rare and not a life threatening disease it is important that we can tell research institutions how many of us there are, and where we are located.

Extra Hands for ALS

Extra Hands for ALS is a national voluntary service movement devoted to the fight against ALS, also called Lou Gehrig's disease. Launched in 2002, Extra Hands is expanding nationally and now operates in many cities in the United States.

Extra Hands for ALS was designed to help people afflicted with ALS and their families, while simultaneously building awareness of the disease through the students who volunteer to visit them.

Volunteering
Students and mentors, here you can learn all about the Extra Hands program.

ALS Family Registration
If you or someone in your family has ALS, the fight against ALS needs you! You have so much to teach the Extra Hands student volunteers about courage and determination. And while you are doing it, they will wash the dishes, walk the dog, read you the newspaper, or any other non-medical task you want! Please join us in educating a whole new generation of ALS fighters.

Muscular Dystrophy Family Foundation®!

Established in 1958, the Foundation has only one mission; to provide adaptive equipment and emotional support to individuals and families affected by one of over forty neuromuscular diseases covered under our program. The Muscular Dystrophy Family Foundation® conducts no research. Believing research is important; we believe it is equally as important to live an independent and productive life each day by having the proper equipment and emotional support available. Muscular Dystrophy Family Foundation is a registered trademark of the Muscular Dystrophy Family Foundation

For people with disabilities, Assistance Dogs make possible the things that are sometimes taken for granted.  Service Dogs, turn on and off lights for their owners who can't use their arms. They can also push elevator buttons, pull wheelchairs and retrieve items for their owner.

HELPING HANDS - Capuchin Monkeys

HELPING HANDS is a non-profit organization dedicated to improving the quality of life for disabled individuals by training capuchin monkeys to assist them with daily activities. Monkey helpers perform simple, every day tasks, such as getting something to eat or drink, retrieving dropped or out of reach items, assisting with audio cassettes, videocassettes, CDs, and books, turning lights on or off-tasks that we take for granted, and in many cases, our monkeys have enabled people to work from their homes.

Community Resources for Independence (CRI)

Community Resources for Independence (CRI) is a non-profit corporation dedicated to the advancement of the rights of persons with disabilities to equal justice, access, opportunity and participation in our communities.  Serving Sonoma, Mendocino and Lake Counties in California. 

Redwood Caregiver Resource Center

In operation since 1985, Redwood Caregiver Resource Center continues to provide services to family caregivers throughout the Redwood Empire, including the counties of Del Norte, Humboldt, Mendocino, Lake, Sonoma, Napa, and Solano.

The San Francisco Chronicle Season of Sharing Fund

Through a network of 120 community service agencies, the Season of Sharing Fund provides assistance to strengthen the stability of a family in crisis.

Senior citizens (60+) or disabled individuals and low-to-moderate income families with dependent children who have a one-time critical need and who reside in the California counties of Alameda, Contra Costa, Marin, Napa, San Mateo, San Francisco, Santa Clara, Solano or Sonoma. Funds are also distributed to food banks in these counties. If you or someone you know needs short-term assistance and might qualify for a grant, please contact the HELPLINK referral services at 1-800-273-6222. You will be directed to a Community Service Agency near your home who will work with you.

Muscular Dystrophy Association - San Francisco, California

MDA's 200 local offices serve every community in the United States through a vast program of clinics, support groups, summer camps, equipment loans and much more.  To register with MDA if you have a neuromuscular disease, have your Doctor contact your local chapter on your behalf.

The ALS Association (ALSA) - Bay Area Chapter (California)

The ALS Association (ALSA) is the only national not-for-profit voluntary health organization dedicated solely to the fight against ALS through research, patient support, information dissemination, and public awareness.

The braille, cassette and record collections of the Braille and Talking Book Library (BTBL) are available to those who are eligible for the Library of Congress National Library Service for the Blind and Physically Handicapped.

Northern California Links:  Please call our Braille and Talking Book Library if you need more information about eligibility criteria, signing up for BTBL Services, or if you have questions about the special Application Form (PDF).

All other locations:  http://www.loc.gov/nls/

California Telephone Access Program (CTAP)

You can reach the California Relay Service (CRS) toll free:
•DIAL 711 or
•TTY users call 1-800-735-2929
•Non-TTY users call (calling by voice) 1-800-735-2922
•Speech To Speech users call 1-800-854-7784
•Website: http://www.ddtp.org

Free: Speech amplifier to increase voice volume over the phone, artificial larynx, TTY (Telecommunication device with keyboard and visual display, for people who are deaf, hard of hearing or speech impaired), Speech to Speech relay service, three-way calling allows familiar third party to assist with your phone communication.

Sonoma County, California Paratransit

Individuals interested in using Sonoma County Paratransit service must be registered and certified as ADA eligible before using the service. To apply for ADA paratransit service, call Sonoma County Transit at 707-585-7516, or TDD 707-585-9817 and ask to have the application material mailed to you

Other Northern California Paratransit Providers:
ATC/Intelitran (San Francisco) ...... 415-351-7000             Cloverdale Transit ....... 707-894-2521
Healdsburg Senior Center ............... 707-894-2521             Napa Valley Transit ..... 707-257-9217
Petaluma People Service .................. 707-756-8466             Vallejo Transit .............. 707-649-1999
Rohnert Park Sunshine Bus ............ 707-585-6780            Willits ............................. 707-459-9038
Whistlestop Wheels (Marin) ......... 415-456-9062              Ukiah ............................. 707-462-3881
Mendocino Transit Authority (Fort Bragg) ...........707-964-1800