The National MS Society has brochures, booklets, and books about many aspects of MS. For example, they have booklets directed at children of parents with MS, teenagers who have a parent with MS, and another one about working together as a family. Many of their print resources are available on their web site, and are also available at your local chapter. You can phone their central number and be connected to your local chapter: 1-800-Fight-MS (1-800-344-4867)
Books about MS
Dr. Howard Weiner, the Co-Director of Partners MS Center in Boston, has written a new book called Curing MS: How Science is Solving the Mysteries of Multiple Sclerosis, 2004, Random House. It is a very interesting book, which takes you behind the scenes in the labs as scientists and doctors study and test treatments for MS. It can help you gain a solid understanding of MS without being a list of all the bad things that the illness might do to you.
Roz Kalb is a psychologist who has worked for many years with people with MS and their families. She has authored many books and articles. Here are three suggested readings:
Kalb, Rosalind,Ed., (2000): Multiple Sclerosis: the questions you have, the answers you need, (2nd Edition), Demos Publications, 386 Park Avenue South, Suite 201, New York, NY 10016, U.S.A.
Kalb, Rosalind,Ed., (1998): Multiple Sclerosis: A Guide for Families. New York: Demos Publications.
LaRocca, Nicholas, & Kalb, Rosilind (2006): Mult
www.nmss.org is the web site of the National Multiple Sclerosis Society, and it is full of useful information. The MS Society is fairly conservative about the information published, so it is very reliable.
www.msif.org is the web site of the Multiple sclerosis international federation. Their web site is a link to people with MS all over the world, and it is a good site to learn about current research. They send out an email newsletter which updates people about current published research.
www.ninds.nih.gov/disorders/multiple_sclerosis/multiple_sclerosis.htm is the web site of the National Institute of Neurological Disorders and Stroke, of the National Institutes of Health. This is the government agency which funds research into MS, and the information on this website is reliable.
www.acceleratedcure.org is the website of the Accelerated Cure Project, a new organization seeking to enhance MS research.
www.mscare.org is the website of the Consortium of Multiple Sclerosis Centers, a national organization which is a link between MS Centers, and a good source of reliable information.
http://www.expertmspatient.com is an educational tool offered by the Consortium of MS Centers
www.partnerspediatricmscenter.org is the website of the Partners Pediatric MS Center at Massachusetts General Hospital for Children.
www.nationalmssociety.org/keepsmyelin/index.html is the website of the online magazine, “Keep Smyelin”, an entertaining publication for children who have a parent or relative with MS.
www.lookingglass.org is the website of Through the Looking Glass, an organization in California which advocates for people with disabilities and in particular for parents with a disability.
www.sexualhealth.com A web site that includes an article about MS and sexuality in its Disability and Chronic Illness section.
Each of the companies that make medications for MS, have their own websites. These sites often have useful information directed at patients who are using their medication. They are also commercial sites that are used to market each company’s medication. Patients find these sites useful, but remember to read the information in the light of the marketing efforts employed there.
Financial Assistance Resources
Adapting: Financial Planning for a Life with Multiple Sclerosis, A free workbook offered by the National MS Society to help you manage your money and plan wisely for the future.
Home LINKS Program 800-493-9255 or www.nationalmssociety.org/MAM/event/event_detail.asp?e=13699
Offered by the New England Chapter of the MS Society, the Home LINKS program is a short-term care management program providing information and referral, support, access to care, individualized care management and self-advocacy tools.
www.ilusa.com Independent Living Centers are typically non-residential, private, non-profit, consumer-controlled, community-based organizations providing services and advocacy by and for persons with all types of disabilities. Their goal is to assist individuals with disabilities to achieve their maximum potential within their families and communities. This website provides a listing of all the Independent Living Centers in your state.
RESOURCES BY STATE:
B.Fit 617-825-3905×300 or www.thebostonhome.org an innovative, outpatient day program for adults with multiple sclerosis and other neurological diseases.
1. Mass Rehab Commission 1-800-223-2559 or www.mass.gov
2. Resource Partnership 508-647-1722 or www.resourcepartnership.org
3. Social Security Administration 800-772-1213 www.ssa.gov Information about eligibility for SSI and SSDI. Applications can be made on-line.
www.MassResources.org provides detailed information about the many types of assistance available to those in need in Massachusetts including housing, food, utility
assistance, legal assistance, etc.
“The Ride” 617-222-5123 or www.mbta.com Download the application for The Ride, which provides door-to-door transportation for people who cannot use general public transportation.
New Hampshire Resources
New Hampshire Helpline 603-225-9000 or by dialing 2-1-1 from an in state phone or
www.nhhelpline.org Information on social services and emergency help.
Rhode Island Resources
MS Society Rhode Island Chapter 401-738-8383
Office of Community Services & Advocacy 401-421-7833. Under the auspices of Catholic Diocese of Providence, they operate several centers that provide an array of community based services including homebound care and respite care services.