Company that makes the merriwalker, latest version of which is "untippable." Used by one member of the Mailing List for Huntington's Disease for someone with juvenile HD who cannot stand up or walk on his own. Address: P.O. Box 374, Talmadge, Ohio, 44278. Phone: 1-800-628-1441. Cost of the merriwalker is about $280.00.
Company which makes a wheelchair that is padded. Some people on the Mailing List for Huntington's Disease report that it is difficult to push, but it seems to be very comfortable for people with Huntington's Disease and it was paid for by Medicare. Address: 385 Phillip St., Waterloo, Ontario. Phone: 519-746-8080 or 800-668-0637. They can be contacted by email at sales@broadaseating.com.
Wonderful web site from Dr. Richard Dubinsky at the Kansas University Medical Center. Includes articles on communication strategies, eating and swallowing, genetics of HD, home safety, etc. Available at: http://www.kumc.edu/hospital/huntingtons/index.html
The Dysphagia Cookbook is a specialty cookbook filled with nutritious, great-tasting recipes for those whose eating options are limited by chewing and swallowing difficulties. All of the recipes focus on enhancing flavor, presentation, texture, aroma, and color. It can be found on the publisher's website at Cumberlandhouse.com or on Amazon.com.
A non-profit organization in California which supports and assists caregivers of brain-impaired adults through education, research, services and advocacy. Web site includes articles such as Legal Planning for Incapacity, When you Need to Hire In-Home Help, Long-Distance Caregiving, Laying the Groundwork for Communication, etc. Available at: http://www.caregiver.org/
Exciting communication aid and personalized care plan for those who have difficulty with speech. Consists of a custom-made, spiral bound, laminated book which documents such things as personal interests, food preferences, favorite TV shows, hygiene needs, important phone numbers, etc. Information available from Jodi Heath, 870 Northwest Blvd., Columbus, Ohio, 43212, Phone: 614-299-8438, and on the Internet at: http://members.aol.com/fngrprnts1
Catalog of accessories for wheel chairs, devices to help make eating and dressing easier, items for safety-proofing bathrooms, etc., from NCM Consumer Products Divison in San Jose, California. Telephone number: 1-800-821-9319, Monday - Friday, 8 a.m. - 5 p.m.
Online support group for Huntington's Disease. A wonderful group of people, all helping each other with information and support. For instructions on joining see: Mailing List for Huntington's Disease.
Resources relating to care of persons with HD from Rob Laycock's excellent Huntington's Disease web site. Includes hyperlinks to other resources on the Internet. Available at: http://www.interlog.com/~rlaycock/care.html
Company which makes the Halesworth Chair, a highly specialized chair for those with Huntington's Disease. This chair has considerably improved the quality of life for a large number of Huntington's Disease sufferers in Europe. It gives great support and positioning, especially when eating and resting. It is strong and well padded to cope with severe involuntary movements, and has a padded legrest for additional support. It also has wheels and a push handle for easy maneuverability. Address: 23 Rookwood Way, Haverhill, Suffolk, CB9 8PB, England (Tel: +44 (0)1440 705352 or Fax: +44 (0)1440 706521 or Email: bev@kirtonhealthcare.demon.co.uk). Web site: http://www.kirton-healthcare.co.uk/
A cookbook by J. Randy Wilson for people suffering from chewing, swallowing, and dry mouth disorders. It contains 200 recipes and sells for $23.95. A description is available at http://www.rof.net/yp/randyw/. Information is also available by writing to: PO Box 2190, Glenwood Springs, CO 81602, or by phoning 1-800-843-2409. For sample recipes see Ham-Potato Bake and The Slick Chick.
Resources for providing nutrition to people with Huntington's Disease. Includes cookbooks, finger foods, ideas on providing nutrition, internet resources, and recipes. Available at: http://www.renettedavis.com/nutritn.html.
Second edition published in 1999, this book by Adam Rosenblatt, M.D., Neal G. Ranen, M.D., Martha A. Nance, M.D., and Jane S. Paulsen, Ph.D., is state of the art for physicians who treat Huntington's Disease patients. It is written in fairly non-technical language so it is also very useful for friends and families of Huntington's Disease victims. Available from Huntington's Disease Society of America, 158 West 29th Street, 7th Floor, New York, NY 10011-5300. Phone: (212) 242-1968 or (800) 345-HDSA. Website: http://www.hdsa.org/. For a review of the book see: http://www.lib.uchicago.edu/~rd13/hd/physicia.html
Company which manufactures over 900 innovative items, such as wheelchair accessories and aids to daily living. Address: 19747 Wolf Road, Mokena, IL 60448. Phone: 1-800-843-7234. Email: info@therafin.com. Website: http://www.therafin.com
Complete feeding program for people with swallowing disorders. Products include instant food thickener, instant pasta for the pur�e diet, heat and serve pur�e meat patties, pre-thickened ready-to-serve juices, pamphlets, training videos, 60-page cookbook with single serving recipes, 180-page Puree Gourmet cookbook, plastic molds to make food look more desirable, decorating kit, and in-service seminars. Information available from American Institutional Products, Inc., 2733 Lititz Pike, Lancaster, PA, 17601, Phone: 1-800-866-7757. To purchase small amounts for home use, contact Fred Sammons Company, 1-800-323-5547. For additional information, including an excellent explanation of dysphagia, see the Thick & Easy Pur�e Express web site at: http://www.hormelhealthlabs.com/
Commercial thickener for those who have difficulty swallowing. Information available from Milani Foods, 2525 Armitage Avenue, Melrose Park, IL 60160, Phone: 1-800-333-0003. They have a pamphlet called "Swallowing Problems?" which includes tips for safe swallowing, a booklet entitled "Dysphagia: a Review for Health Professionals," and a collection of recipes with institution size servings using Thick-It called "Pur�e & Fancy."
Ideas on communication, etc. by individuals who have known or cared for someone with Huntington's Disease. Available on the Internet at: http://www.lib.uchicago.edu/~rd13/hd/tips.html
Book in looseleaf form written by Eileen Werbel, M.S.W., and published with funding from the Foundation for the Care and Cure of Huntington's Disease. Includes chapters on safety, clothing, food, communication, and other aspects of daily life. Available from the Huntington's Disease Society of America, 140 W. 22nd Street, 6th Floor, New York, NY 10011-2420. Phone: 800-345-HDSA or 212-242-1968.
Youcan Toocan is a leading online retailer of home health products, including drinking aids, eating aids, medication aids, special clothing and footwear, dressing aids, personal care supplies, and bathroom safety equipment. Their website is available at www.youcantoocan.com.
A welcome message by Jean Miller for people new to hunt-dis, the online support group for Huntington's Disease. Includes a lot of useful information for anyone dealing with Huntington's Disease. On Carmen Leal-Pock's website at: http://ddi.digital.net/~promo/hunt.html
This page is still in the process of being developed. If you know of any helpful resources, please send them to Renette by clicking here.
Created: Jan. 4, 1997
Last updated: Aug. 13, 2011