UCSF Multiple Sclerosis CenterThe following is a list of agencies and services. Many other sources are available but this should give you a start. For information about local chapters & branches, unless otherwise notes, contact the respective national office.
Family Caregiver Alliance 690 Market Street, Suite #600 San Francisco, CA 94104 (415) 434-3388 (800) 445-8106 (CA only) http://www.caregiver.org
National Family Caregivers Association 10400 Connecticut Ave., Suite #500 Kensington, MD 20895 (800) 896-3650 http://www.nfcacares.org
Governors Committee For Employment Of Disabled Persons 800 Capitol Mall-Mic 41 Sacramento, CA 95814 (916) 654-8055 (800) 695-0350 http://www.edd.cahwnet.gov/gcedpind.htm http://www.gcedp.org
Association For Higher Education And Disability (AHEAD) P.O. Box 21192 Columbus, OH 43221-0192 (614) 488-4972 (VOICE/TDD) http://www.ahead.org
Equal Employment Opportunity Commission Office Of Communication And Legislative Affairs 1801 L St, N.W. 9th Floor Washington, DC 20507 (202) 275-7377 (800) 669-3362 (publications) 901 Market St., Suite #500 San Francisco, CA 94103 (800) 669-4000 http://www.eeoc.gov EEOC handles question and concerns about employment discrimination.
National Council On Disability 1331 F Street, N.W. Suite 850 Washington, DC 20004 (202) 272-2004 http://www.smart.net/~ncd The National Council on Disability studies and makes recommendations about public policy for people with disabilities. The council also publishes Focus, a free newsletter.
President’s Committee On Employment Of People With Disabilities 1331 F Street, N.W., Suite 300 Washington, DC 20004-1107 (202) 376-6200 http://www.dol.gov/dol/odep The President’s Committee on Employment of People with Disabilities sponsors a job accommodation network and publishes information on employment issues for people with disabilities and their employers.
Center For Independent Living 2539 Telegraph Ave. Berkeley, CA 94704 (510) 841-4776 http://www.cilberkeley.org
U.S. Department Of Justice Civil Rights Division P.O. Box 66738 Washington, DC 20035-6738 (202) 514-0301 (800) 514-0301 (VOICE) (800) 514-0383 (TDD) http://www.usdoj.gov/crt/ada/adahom1.htm The department of Justice, Civil Rights Division is responsible for enforcement of the Americans with Disabilities Act (ADA). Copies of the ADA can be obtained from that office.
Library Of Congress, Division For The Blind And Physically Handicapped 1291 Taylor Street, N.W. Washington, DC 20542 (800) 424-8567 (800) 424-9100 (202) 707-5100 http://www.loc.gov/mls The Library of Congress provides a variety of services for people with visual impairments, including free books on tape, along with the loan of listening equipment; library services through 140 cooperating libraries; and a free booklet, Information for Handicapped Travelers.
Adapt P.O. Box 9598 Denver, CO 80223 http://www.adapt.com
Bay Area Outreach Recreation Program (Borp) 830 Bancroft Way, Suite #205 Berkeley, CA 94710 (510) 849-4663 http://www.borp.org
Canine Companions 2965 Dutton Ave Santa Rosa, CA 95407 (707) 577-1700 (800) 572-2275 http://www.caninecompanions.org
National Association For Continence Clearinghouse P.O. Box 8310 Spartanburg, SC 29305-8310 (864) 579-7900 (800) 252-3337 http://www.nafc.org
Jimmie Huega Center 27 Main Street, Suite #303 Edwards, CO 81632 (970) 926-1290 (800) 367-3101 http://www.heuga.org
National Multiple Sclerosis Society Northern California Chapter 150 Grand Ave Oakland, CA 94612 (510) 268-0572 (800) FIGHT MS (800-344-4867) http://www.nationalmssociety.org/can/home/ (Northern California Chapter) http://www.nationalmssociety.org/ http://www.msconnections.org
Consortium Of Multiple Sclerosis Centers Bernard W. Gimbel MS Comprehensive Care Center c/o Holy Name Hospital 718 Teaneck Road Teaneck, New Jersey 07666 Telephone: (201) 837-0727 Fax: (201) 837-8504 The CMSC provides a list of MS centers in the United States with the resources available at each center.
International MS Support Foundation P.O. Box 90154 Tucson, Arizona 85752-0154 http://www.msnews.org
United Way Of The Bay Area 50 California Street, Suite 200 San Francisco, CA 94111 (415) 772-4300 Helpline: (800) 273-6222 Fax: (415) 986-3605 http://www.theunitedway.org
National Institute On Community Based Long Term Care c/o National Council On Aging 409 Third Street, S.W., Suite #200 Washington, D.C. 20024 (202) 479-1200 (800) 424-9046 http://www.ncoa.org
National Citizens Coalition For Nursing Home Reform 1424-16th St NW, Ste 202. Washington, D.C. 20036-2211 (202) 332-2275 http://www.nursinghomeaction.org
Ombudsman Program Crisis Line 6221 Geary Blvd. 3rd Floor San Francisco, CA 94121 (415) 751-9788 (800) 231-4024
California Advocates For Nursing Home Reform 1610 Bush St. San Francisco, CA 94109 (415) 474-5171 (800) 474-1116 http://www.canhr.org
UCSF/Mt Zion Home Care 3330 Geary Blvd. San Francisco, CA 94118 http://mzweb.his.ucsf.edu
The Goldman Institute On Aging 3600 Geary Blvd. San Francisco, CA 94118 (415) 750-5350 http://www.gioa.org
National Institute On Adult Day Care c/o National Council On Aging 409 Third Street, S.W., Suite #200 Washington, D.C. 20024 (202) 479-1200 (800) 424-9046 http://www.ncoa.org (National Council of Aging)
California Health Decisions 505 S. Main Street, Suite 400 Orange, CA 92868 (714) 647-4920 http://www.cahd.org
National Clearinghouse For Legal Services 205 W. Monroe, 2nd Floor Chicago, IL 60606 (312) 263-3830 (800) 621-3256 http://www.povertylaw.org
Federal Communications Commission (ADA Documents & General Information) 445 12th Street, S.W. Washington, D.C. 20554 (202) 418-0200 / (888) 225-5322 http://www.fcc.gov
American Self-Help Clearinghouse Northwest Covenant Medical Center 25 Pocono Rd. Denville, NJ 07834 http://www.cmhc.com/selfhelp http://www.medhelp.org/web/ncmc.html (Northwest Covenant Med. Center)
Department Of Health Services Medi-Cal Information 9343 Tech Center Drive #260 Sacramento, CA 95826
Medi-Cal Information 100 Moffett Blvd., Mountain View, CA 94043
Federal Emergency Management Agency (FEMA) (Disaster Preparedness Publications) P.O. Box 70274 Washington, D.C. 20024 http://www.fema.gov
Medicare Claim Department Chico, CA 95927 (800) 952-8627 http://www.medicarenhic.com
National Self-Help Clearinghouse Graduate School & University Center Of The City University Of New York 25 West 43rd Street, Room 620 New York, N.Y. 10036
Planetree Health Library 2040 Webster Street San Francisco, CA 94115 (415) 600-3681
Social Security Administration 6401 Security Boulevard Baltimore, MD 21235 (800) 772-1213 http://www.ssa.gov/SSA_Home.html Contact the Social Security Administration to determine your local branch and if you are entitled to receive benefits, based on your level of disability.
Electric Mobility Corporation One Mobility Plaza P.O. Box 156 Sewell, NJ 08080 1-800-718-2082 http://www.rascalinsurance.com
Orthokinetics / Lark of America W220 N507 Springdale Road, Waukesha, WI 53187 800-558-7786 http://www.orthokinetics.com
Pride Mobility Corporation 182 Susquehanna Ave. Exeter, PA 18643 (800) 800-8586 http://www.pridemobility.com
Leisure-Lift 1800 Merriam Lane Kansas City, KS 66106 (800) 255-0285 http://www.pacesaver.com/prodpage.htm
Avonex Home Page http://www.biogen.com
MS Active Source- A Biogen sponsored site providing information for all patients living with MS. http://www.msactivesource.com
Betaseron Home Page http://www.betaseron.com
MS Pathways- A Berlex sponsored site providing information for MS patients and their families. http://www.mspathways.com
Copaxone Home Page http://www.tevamarionpartners.com
Shared Solutions- A Teva Sponsored site providing information for MS patients and their families. http://www.sharedsolutions.com
Rebif Home Page http://www.rebif.com
National Multiple Sclerosis Society Home Page http://www.nmss.org
Northern California Chapter of the NMSS Home Page http://www.msconnection.org
International Federation Of Multiple Sclerosis Societies http://www.ifmss.org.uk
National Institute Of Neurological Disorders And Stroke http://www.ninds.nih.gov
Multiple Sclerosis Education Network http://www.htinet.com/msen.html
Consortium Of Multiple Sclerosis Centers http://info.med.yale.edu/cmsc
International Multiple Sclerosis Foundation http://www.msnews.org
Dr. Allen Bowling's Website describing complementary and alternative therapies in MS http://www.ms-cam.org
Aging Parents and Elder Care http://www.aging-parents-and-elder-care.com
The following is a selected list of fine books available on MS. Consult the resource section for more specific information.
Health Insurance: How to Get it, Keep it, or Improve What You've Got Enteen, Robert Demos Vermande, 1996
Multiple Sclerosis: A Guide for the Newly Diagnosed Holland, Murray and Stephen C.Reingold Demos Vermande, 1996
Multiple Sclerosis and the Family Kalb, Rosalind and Labe Scheinberg Demos Vermande, 1992
Multiple Sclerosis: The Questions You Have, The Answers You Need Kalb, Rosalind Demos Vermande, 1996
Multiple Sclerosis Fact Book Lechtenberg, Richard F.A. Davis Company, 1995
Plain Text Mairs, Nancy University of Arizona Press, 1986
Multiple Sclerosis: the Facts Mathews B Oxford University Press 1985
Multiple Sclerosis: Your Legal Rights Perkins, Lanny and Sara Perkins Demos Vermande, 1996
Multiple Sclerosis: New Hope and Practical Advice for People with MS and Their Families Rosner, Louis and Shelly Ross Simon & Schuster. 1992
Symptom Management in Multiple Sclerosis Schapiro, Randall Demos Vermande, 1996
Multiple Sclerosis: A Guide for Patients and Their Families Scheinberg, Labe and Nancy Holland Raven Press, 1987
Therapeutic Claims in Multiple Sclerosis Sibley, William A. Demos Vermande, 1996
Multiple Sclerosis in Clinical Practice Van den Noort S, Holland NJ Demos Vermande, 1999
Fall Down Seven Get Up Eight Wolfe, John Academy Books, 1991
Abnormal Reflexes Muscle responses to a stimulus, which can be increased when there is a malfunctioning of the central nervous system.
ACTH (Adrenocorticotropic hormone) Hormone produced by the pituitary gland which stimulates the adrenal glands to produce cortisone.
Attack See Exacerbation.
Ataxia Inability to properly coordinate movement. This usually refers to walking and movement of the arms.
Auto-Immune Disease Refers to conditions in which the immune system goes awry and develops a response against its own cells or tissues.
Autonomic Nervous System Portion of the peripheral nervous system which is not under voluntary control. Governs "automatic" functions like sweating, heart rate, sexual functions, bowel motility.
Central Nervous System (CNS) The CNS consists of the brain and the spinal cord, which are enclosed in the skull and in the spinal canal that is formed by the vertebrae. It is where many of the bodily functions are controlled, where many sensations are processed, and from which signals are sent to the different parts of the body. These functions include muscle control, eyesight, breathing, memory, etc. The CNS is distinguished from the peripheral nervous system, which includes the actual nerves to and from the muscles and other body parts.
Cerebellum The part of the brain (at the base) dealing with the control of balance. It is part of the CNS. Cerebral Spinal Fluid (CSF) A water-like fluid which surrounds and bathes the brain and the spinal cord.
CSF Protein Protein is normally dissolved in spinal fluid and its concentration can be measured. It may be increased when there is inflammation
Cortisone Hormone of the adrenal glands known to have anti-inflammatory and immune system suppressing properties. Also called glucocorticoid or steroid.
Cytokines Messenger chemicals released by T-cells that signal and mobilize other components of the immune system or other organs.
Decubitus Refers to body position that causes an undue pressure on certain parts of the body. This pressure can lead to the eventual breakdown of skin and underlying tissue. Decubitus sores are also called bed sores or pressure sores.
Demyelinating Disease A disease causing loss (or damage) of myelin. Multiple sclerosis is one example of a demyelinating disease in the central nervous system, although other conditions can also lead to dymyelination.
Demyelination Abnormal process that leads to the loss or breakdown of myelin .
Dementia A deteriorated mental state due to a disease process. It canresult from many disorders of the nervous system.
Dexamethasone (Decadron) A high potency glucocorticoid (steroid) which is used to decrease swelling and inflamation in the nervous system.
Diplopia Double vision.
Dysarthria Slurring of speech.
Dysphagia Difficulty with swallowing, often due to weakness or spasm of the esophagus.
Evoked Potentials Diagnostic tests done using stimulation of the special senses (seeing, hearing, feeling) to assess the function in these CNS neural pathways.
Exacerbation (Attack or Relapse) Sudden onset of new symptoms or worsening of old ones due to MS. In general, these symptoms must last for more than 24 hours before it is considered an attack.
Edema A condition in which the body tissues contain an excessive amount of fluid (i.e., when there is swelling of the tissue).
Gamma Globulin A specific proteins found in normal human serum and human CSF which are increased in the CSF in 70-80% of persons with multiple sclerosis. These proteins are antibodies.
Immune Defect General term describing different malfunctions in the immune system where it either does not respond to a foreign substance by destroying or neutralizing it, or where the immune system erroneously destroys normal body structures (auto-immune disease). Examples of the latter condition are lupus erythematosus, rheumatoid arthritis, and multiple sclerosis.
Immune System Consists of a number of different structures in the human body (lymph nodes, bone marrow, thymus gland, etc.) which produce certain types of white blood cells and antibodies which have the ability to destroy or neutralize various germs, substances, and poisons which are foreign to the self.
Incontinence Inability to control the urinary bladder or bowels.
Intrathecal Within the spinal canal.
Lhermitte's Sign Sensation of tingling running down the middle of the back upon bending the neck forward. Can occur in different conditions involving the neck portion of the spinal cord. It is sometimes felt in arms and legs as well.
Lumbar Puncture (Spinal Tap) Insertion of a needle into the spinal canal in order to obtain a sample of CSF, and/or to inject special materials intrathecally.
Lymphocytopheresis Removal of white blood cells from the blood.
Magnetic Resonance Imaging (MRI) A new and powereful technique that produces images of deep internal body structures. This procedure uses magnetic fields rather than radiation to obtain the images.
Motor Usually refers to the ability to carry out activities which require the use of body muscles (i.e., involved in movement).
Myelin Fatty substance which acts as an insulator around most of the nerve fibers in the human body. Cholesterol is main ingredient. Found in the central as well as the peripheral nervous system.
Multiple Sclerosis CNS disorder characterized by worsening (exacerbations) and improvements (remission) of symptoms. This leaves multiple scars (plaques) in the CNS. Frequently encountered symptoms include loss of strength, difficulty with balance and bladder control, numbness and tingling, and blurred or double vision.
Neurogenic Bladder Condition in which the control of urinary bladder control is disturbed. Manifested by frequent or urgent urination, loss of the urge sensation, inability to empty the bladder even though the urge may be present, or loss of bladder control, which then empties itself irregularly and spontaneously.
Nystagmus Abnormal eye movements consisting of repetitive jerks.
Oligoclonal Bands (Immunoglobulin G) Specific gamma globulin proteins (antibodies) that are increased in 80% of persons with MS.
Optic Neuritis Inflammation of the nerve which connects the eye with the brain and which manifests itself mainly as blurring or loss of vision and occasionally pain.
Paresis Weakness, usually in extremities.
Paresthesias Abnormal sensations including, but not limited to tingling, "pins and needles", super-sensitivity to touch, constriction and discomfort.
Peripheral Nervous System (PNS) Consists of all of the nerves in the body (outside the CNS) which carry signals from the CNS to the muscles and organs as well as signals from the body into the CNS.
Plaque Patchy area of inflammation, demyelination, sclerosis in the CNS characteristic of MS damage.
Plasmapheresis Removal of plasma (the fluid portion of the blood that does not include cells) from the blood. This fluid contains the antibodies and its removal is an experimental treatment for MS.
Position Sense bAbility to feel slight movements of fingers or toes and know where body parts are in space.
Reflex An involuntary response of a certain part of the human body to a brief stimulus which usually does not require processing of the stimulus through the conscious mind. Example: jerking of leg upon striking the knee (patellar) tendon.
Remission Improvement or complete disappearance of one or more of the neurological symptoms that result from MS.
Romberg's Sign Inability to maintain balance in the standing position with feet and legs drawn together and eyes closed.
Scanning Speech A type of slurred speech resulting from involvement of the cerebellum. (Also called explosive or ataxic speech).
Spasticity Increased resistance to muscle stretching and loss of normal elasticity of leg and/or arm muscles resulting from CNS disease process. Often manifested by muscle stiffness, which can result in difficulty with movements of the extremities. Steroids (See Cortisone).
Tremor Various rhythmic involuntary movements involving arms, legs or head, occurring in numerous illnesses and conditions and greatly varying in type and severity.
Urodynamic Testing Specialized diagnostic tests of the bladder that measure functional integrity of the urinary system.
Vertigo Dizziness or spinning sensation.
Visual Evoked Potential (VEP) (See Evoked Potentials)
Visual Field Portion of space extending in all directions which can be seen by one eye without changing its position.
White Blood Cells Cells found in normal human blood or spinal fluid known to have protective properties and which are part of the immune system.