Loved Ones who support someone with MS Community Group
This group is meant for those who help someone with MS. This would include family, good friends, spouses and caregivers. It is a place to exchange good ideas that may help us in caring for those we love that have this disease.
Books
∫ Caring for Loved Ones with Advanced MS: A Guide for Families, Dorothy E. Northrop, MSW, ACSW, and
Debra Frankel, MS, OTR, ed. 2007. Available from National MS Society Chapters and at
www.nationalMSsociety.org
This publication provides caregiving tips and support to families providing significant daily care to a
family member with MS.
∫ Multiple Sclerosis: A Guide for Families, (3rd Ed.),Rosalind C. Kalb, PhD, ed. Demos Medical Publishing,
2006. 256 pp. $24.95. 800-532-8663 or www.demosmed.com
Contains chapters on topics ranging from emotional and cognitive issues, to sexuality and intimacy, to
life planning.
∫ Multiple Sclerosis: Th e Questions You Have, the Answers You Need, Rosalind C. Kalb, PhD, ed. Demos Medical Publishing, (4th Ed.), 2008. 604 pp. $39.95.
Focuses on medical issues and treatment, with chapters on financial planning, insurance, and
occupational therapy.
∫ Adapting: Financial Planning for a Life with Multiple Sclerosis, National Endowment for Financial Education,
2003. Available from National MS Society chapters.
∫ Th e Comfort of Home: An Illustrated Step-by-Step Guide for Caregivers, by Maria M. Meyer with Paula Derr, RN. CareTrust Publications, (3rd Ed.), 2006. 364 pp. $23.
800-565-1533 or www.comfortofhome.com
A practical guide to caregiving, from activities of daily living to emergency situations. Includes many pics
∫ Helping Yourself Help Others: A Book for Caregivers, byRosalynn Carter, with Susan Golant. Random House/ Time Books, 1995. 288 pp. $14.95. 800-733-3000.
Lots of basic information for caregivers.
∫ Multiple Sclerosis: Your Legal Rights, by Lanny Perkins, Esq. and Sara Perkins., Esq. Demos Medical Publishing, 3rd edition, 2008. 160 pp. $21.95.
A comprehensive guide to working with doctors and lawyers, making choices about employment and
income, MS and your job, disability and other federal benefi ts, insurance issues, dealing with taxes, family law, handling debts, and getting around with MS. Ordering books call 800-532-8663. Books with no ordering information can be found in bookstores or from major Web booksellers.
Caregiver.com www.caregiver.com
*Maintains one of the most visited caregiver sites on the Internet.
*Publishes Today’s Caregiver Magazine.
*Provides links to many resources such as government and nonprofit agencies.
* Today’s Caregiver Magazine www.caregiver.com/magazine
3005 Greene Street, Hollywood, FL 33020 Tel: 800-829-2734
*A bi-monthly caregiver magazine. Tel: 800-896-3650
National Family Caregivers Association
10400 Connecticut Ave., Suite 500, Kensington, MD 20895
www.thefamilycaregiver.org
email: info@thefamilycaregiver.org
Free member benefi ts include the following:
* Take Care!, a quarterly newsletter.
* The Resourceful Caregiver, a useful guide to resources.
* A support hotline.
The Well Spouse Association www.wellspouse.org email: info@wellspouse.org
63 West Main Street, Suite H,Freehold, NJ 07728, Tel: 800-838-0879
* Publishes Mainstay, a quarterly newsletter.
*Provides networking/local support groups.
Adaptations, equipment and accessibility ABLEDATA Tel: 800-227-0216; TTY: 301-608-8912
8630 Fenton St., Suite 930, Silver Spring, MD 20910
www.abledata.com email: abledata@macrointernational.com
*A database of over 29,000 products that can be searched by type or topic.
American Academy of Orthopedic Surgeons Tel: 800-346-AAOS (800-346-2267) www.aaos.org
6300 N. River Road, Rosemont, IL 60018
*Offers a free booklet on lifting procedures for
home-based carers called “Lift It Safe”.
To order, contact: Meeting Life’s Challenges www.meetinglifeschallenges.com
9042 AspenGrove Lane Madison, WI 53717
∫ A guide to dressing for people with disabilities plus over 100 resources for custom clothing.
∫ Web site offers practical lifestyle information and helpful strategies for people whose lives have been
affected by chronic illness and disability.
National Council on Independent Living www.ncil.org email: ncil@ncil.org
Tel: 202-207-0334 (voice) Tel: 202-207-0340 (tty) Toll Free: 877-525-3400
1710 Rhode Island Ave. NW 5th floor, Washington, DC 20036
∫ Refers callers to local independent living centers.
∫ Offers publications and advice related to disability issues.
∫ Advocates for policy changes.
National Rehabilitation Information Center for Independence
4200 Forbes Blvd., Suite 202, Lanham, MD 20706
Tel: 800-346-2742 (Voice) Tel: 301-459-5984 (TTY)
www.naric.com email: naricinfo@heitechservices.com
∫ A database of research information about assistive technology and rehabilitation.
ProductABILITY
www.tenten.mb.ca
∫ Supplies information about adaptive technology.
Home care agencies/hiring help
National Association for Home Care and Hospice
228 Seventh Street, SE, Washington, DC 20003
Tel: 202-547-7424 www.nahc.org
∫ Provides referrals to state associations, which can refer callers to local agencies.
∫ Offers publications, including, How to Choose a Home Care Agency: A Consumer’s Guide.
Hiring Help at Home
A fact sheet from the National MS Society. Call 1-800-344-4867 to order.
$3.00 shipping.
Tel: 888-860-7244 www.pva.org
Information on recruitment, interviewing, reference checking, training, being a good manager, maintaining
a good working and personal relationship, problems that might arise and how best to solve them, service dogs, assistive technology, and tax responsibilities. Contains sample forms and letters.
Someone Who Cares: A Guide to Hiring an In-Home Caregiver
32 page pamphlet. Free—$3.50 shipping and handling.
The Center for Applied Gerontology Council for Jewish Elderly
3003 W. Touhy Ave., Chicago, IL 60645
Tel: 773-508-1000 www.cje.net email: info@cje.net
A comprehensive and practical guide to hiring your own home care.
Assisted living facilities and nursing homes
American Health Care Association National Center for Assisted Living
1201 L Street, NW, Washington, DC 20005 Tel: 202-842-4444
www.ahcancal.org
∫ Provides consumer information on services,financing, public policy, nursing facilities, assisted
living and subacute care.
American Association of Homes & Services for the Aging
2519 Connecticut Avenue, NW, Washington, DC 20008
Tel: 202-783-2242 www.aahsa.org
∫ Provides information on not-for-profit nursing homes, senior housing facilities, assisted living and
community services.
Assisted Living Federation of America
1650 King St. Ste 602, Alexandria, VA 22314-2747
Tel: 703-894-1805 www.alfa.org
∫ Offers referrals to local facilities listed by state.
ARCH National Respite Locator Service
800 Eastowne Drive, Suite 105, Chapel Hill, NC 27514-2204
Tel: 919-490-5577 www.respitelocator.org
∫ Provides caregivers with contact information on respite services in their area.
Eldercare Locator
National Association of Area Agencies on Aging
Tel: 800-677-1116 www.n4a.org
∫ Supplies information about many eldercare issues, including respite care.
∫ Provides referrals to local respite programs and area agencies on aging.
United Way
701 N. Fairfax St., Alexandria, VA 22314 Tel: 2-1-1
www.unitedway.org
∫ Supplies referrals to local United Way offices.
I hope this info helps someone
EP
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