Our health is important to us. There are many components to what makes our lives healthy. Some of the sections below will be permanent - like the listing of adult clinics, books, and websites. The question of the month and a special topic will change monthly. Current research will change when newer items are posted. Why didn’t they ask us is a fun section of research that simply discovered what most of use knew already. This section will grow as more disabilities are included. Have something to add? Contact Ana thru the form on the Contact Us page.
Books | Clinics | Current Research
Question of the Month
Special Topic | Websites| Why
Profiles in Health Wellness
Nutritious Foods and Recipes for People who have Chewing and Swallowing Problems
Eating should be pleasurable, not painful! It’s a normal part of our everyday lives. People with certain disabilities, such as cerebral palsy or multiple sclerosis, may find food to be difficult or painful to chew or swallow. The American Dietetic Association recommends that medical nutritional therapy include plenty of fluids between and during meals, plus soft foods and liquids as the primary model of food texture for meals and snacks.
Simply because chewing or swallowing might be difficult doesn’t mean we can’t find ways to enjoy healthy food that’s full of vitamins and minerals that looks and tastes delicious! The “Easy to Swallow” website has recipes donated by peoples with chewing and swallowing problems, as well as recipes by world-renowned chefs. The site also offers tips that can make drinking and eating easier, plus it provides other helpful information, such as conversion tables from solid to liquid portions.
Here are a few recipes from this marvelous cookbook:
“Berry Blast” Protein Shake
Berries are high in fiber and antioxidants called flavonoids, which are anti-aging agents, anti-inflammatory agents, and antioxidants.
* 3/4 cup frozen mixed berries
* 1/2 cup organic vanilla yogurt
* 1/2 cup cold water
* 1 scoop vanilla whey protein powder
Add all the ingredients into a blender, and blend until smooth. Serve immediately.
Yield: 1 glass
Blueberry Pudding Drink
* 2 small ripe bananas, peeled
* 8 oz. blueberries
* 1/2 pint orange juice
* 2 scoops of vanilla ice cream
1. Place the bananas, blueberries, and orange juice in a blender, and blend until smooth.
2. Transfer the blueberry smoothie to two dessert-style serving bowls and sprinkle with the reserved blueberries. Top with a scoop of vanilla ice cream, and serve at once.
Yield: 2 servings
Broccoli Soup with Rosemary
* 2 small heads of broccoli, steamed
* 10 oz. chicken stock
* 1 cup cream
* 1 tablespoon fresh rosemary, finely chopped
* salt
* 1 tbsp. toasted almonds
1. Steam the broccoli.
2. Mix with the stock and cream, and bring to a slow simmer.
3. Add salt, rosemary, and toasted almonds.
4. Blend in the food processor; be careful of the steam, and serve.
Yield: 2 servings
Seafood Casserole
* 4 ounce small shrimp, drained, finely chopped
* 6 1/2 ounce can crab meat, finely flaked
* 1 cup celery, finely chopped
* 1 cup onion, finely chopped
* 1 cup green pepper, minced
* 1 cup mayonnaise
* salt & pepper to taste
* 1 tbs Worcestershire sauce
* 1/2 cup milk
* 1 cup herb stuffing mix
1. Combine first nine ingredients and 3/4 cup of the stuffing mix in a bowl, mixing well.
2. Spoon into buttered baking dish.
3. Top with remaining stuffing mix.
4. Bake at 350F for 30 minutes.
Yield: 4 servings
Summer Fruit Mousse
* 1 lb. summer berries or frozen fruit
* 3 oz. confectioner’s sugar
* 1 2½-oz packet gelatin powder
* ½ pint heavy cream
* 7 oz. plain yogurt
* Whole berries for garnish
1. Puree the berries, and mix with the sugar.
2. Prepare the gelatin according to the packet’s instructions.
3. Whip the cream until fairly stiff but not grainy, and mix with the yogurt.
4. Stir the gelatin into the fruit, and fold in the cream.
5. Pour into a dish, and refrigerate for an hour before serving, allowing the gelatine to set.
6. Decorate with berries before serving.
Yield: 6 servings
The “Easy To Swallow” Cookbook: http://www.easytoswallow.co.uk/
Advances in Water Therapy
It’s summertime, and swimming is a fun way to spend an afternoon, but therapeutic swimming is an activity that can benefit almost anyone with cerebral palsy. Water-based exercises use the physical properties of water to resist or assist in the performance of exercises. Not only does swimming give you a freedom of movement you might not have on land, but it can also help improve respiratory ability. Warm water swimming has a relaxing effect and can help improve circulation, stamina and mobility. It’s a great stress reducer, too!
Pain experienced by people with cerebral palsy is a consequence of contractions and contortions of their bodies. The buoyancy factor of water can take the stress of gravity off your body and aid in pain management. Therapeutic activities, such as walking and stretching, can be done in addition other exercises while warm water swimming. Water places less strain and pressure on joints and increases blood flow and flexibility.
Currently, the University of North Carolina at Chapel Hill is offering adults with cerebral palsy more strength and mobility through their innovative research. Three 45-minute exercise sessions a week of aquatic therapy provide intense workouts with less physical wear. Researchers are finding that exercising a spastic muscle doesn’t make the muscle more spastic, and “Use it or lose it!” is a better approach to therapy with positive results.
This article from the May 26 issue of The Raleigh News&Observer, “Water Therapy Used To Treat Cerebral Palsy”, gives more information and includes a video:
http://www.newsobserver.com/news/story/1085457.html
Nutrition and Swallowing Disorders
Good nutrition is an important factor to consider for the person with a swallowing disorder throughout her life, since malnutrition is a condition that can cause serious outcomes, including death. Malnutrition occurs when the body doesn’t obtain the correct amounts of vitamins, nutrients, and other minerals it needs to successfully operate and can be caused by either undernourishment or over-nourishment. If you have a SD, you may not be able to get the nutrition you need for a number of reasons:
–Difficulty coordinating the muscles in the tongue and mouth to chew and swallow correctly, which may lead to a refusal or difficulty in eating or drinking.
–Inability to use eating utensils.
–Inability to swallow can lead to choking or aspirating food into the lungs.
Nutritional supplements may be necessary in order to keep malnutrition at bay. Other solutions for people with swallowing disorders include speech therapy and muscle exercises; they can develop the muscles around the mouth. Better control of the mouth muscles enables the abillity for a good nutritional intake. Inserting NG or PEG tubes should never be a first option.
Recipe: High-Calorie, High-Protein Smoothie
Ingredients:
1 cup vanilla yogurt
1 cup 2 percent milk
1 medium banana, cut into chunks
2 tablespoons wheat germ
2 tablespoons protein powder
Directions:
In a blender, combine the yogurt, milk, banana chunks, wheat germ and protein powder. Blend until smooth.
Pour into a tall frost-chilled glass and serve immediately.
Nutritional Analysis (Per Serving)
Serving size: 2 1/2 to 3 cups
Calories 531
Cholesterol 35 mg
Protein 32 g
Sodium 293 mg
Carbohydrate 82 g
Fiber 5 g
Total fat 10 g
Potassium 1,430 mg
Saturated fat 5 g
Calcium 777 mg
Monounsaturated fat 2 g
Maureen Arcand’s Journals
Maureen Arcand and her Journey into Aging
Maureen Arcand is 78, has cerebral palsy, and believes warm water exercise, chiropractic care, and exercise have dramatically slowed down CP’s aging process in her body. She uses a walker, a motorized recliner, and a raised toilet seat for her comfort, as well as for her safety. She also drinks lots of water to ward off urinary tract infections.
At age forty she worked full-time, was the mother of six children, a homemaker, and a community activist. A newly-divorced mother, Maureen was responsible for all the home’s decisions. Physically, she was able to maintain her home, care for her children, cook and bake, walk six to ten blocks, and type with one finger. She was extremely close to her family and active as a volunteer in advocacy activities for people living with life-long disabilities. Forty was also the first time her jaw locked. (See below)
Maureen’s life was filled with meaningful activities. Her children grew into adulthood, and she welcomed the arrival of each new grandchild. She had a series of full-time jobs, with the last one beginning at age 55; after nine years, she retired from full-time employment. However, her community activities still continued, including six years as an elected Dane County Board member.
Maureen’s championed the rights of people with disabilities while raising six children as a divorced mother. Her career as an advocate for the PWD relied on her exceptional listening and communication skills. Her community service includes many years on the Dane County Board, the Wisconsin Council for Developmental Disabilities, and a statewide agency, Movin’ Out. She was a lobbyist for Access To Independence and was the first evaluation coordinator in Dane County for the Americans with Disability Act. The walls of her home are lined with awards and other symbols of her many achievements and contributions. Madison’s Arcand Park was named after her Maureen Arcand.
At 75, her balance, strength, and coordination were weakened by a urinary tract infection. After an evaluation, she changed the arrangement of her room, making its accessibility to Maureen safer. She enrolled in The Life Line Program, which allows her to push a button worn on her clothing to call for help, although she hasn’t used it yet. A ramp and an accessible shower were installed, a new walker, and a new walker was procured. Recently, help with heavier housekeeping chores has allowed her to maintain her independence in the community.
She enjoys chronicling and sharing information on all aspects of her experiences of aging with CP in hope that order to help others with CP live longer. These two essays deal with Maureen’s aging process with CP and how she dealt with issues such as locking of the jaw, swallowing, tongue movement, chewing, the possibility of choking, and quality of speech. I cannot recommend these highly enough!
“One Person’s Journey into Aging with Cerebral Palsy” –
http://www.wcdd.org/publication
“The Journey into Aging with Cerebral Palsy Continues” –
http://www.wcdd.org/publication
“I can live with disability. I’ve lived with it all my life and coped with it all my life. There’s nothing wrong with asking for help. You shouldn’t be embarrassed to acknowledge your needs.”
–Maureen Arcand
Special Issues in Contraception: Caring for Women with Disabilities. (Kaplan, C.) Journal of Midwifery & Womens Health. Nov/Dec 2006, Vol. 51(6):pp 450-456. Women with disabilities make up a diverse population of underserved clients needing skilled, sensitive, and culturally-competent contraceptive care. Barriers to care for these women are structural, attitudinal, and informational, and lack of attention to their needs is also reflected in limited research and clinical guidelines. Special techniques for a modified gynecologic examination can be employed, and disabled women can work in partnership with providers to promote comfort, respect, and safety. There are specific considerations for the use of different contraceptive methods in women with movement limitations, sensory impairments, seizure disorders, developmental disability, and emotional and psychiatric disorders. A climate of welcoming respect as well as clinical expertise in issues specific to this population can enhance the ability to provide contraception to these women. http://www.jmwh.com
Just Hop Up, Look Here, Read This, Listen Up, Don’t Breathe & Stay Still! Access to Medical Equipment – Where are We? presented by June Kailes on January 4, 2007 http://www.ilru.org
The Importance of Accessible Examination Tables http://www.cdihp.org
How do you feel when those lawyer ads come on decrying the birth of a baby with cerebral palsy or other disability? The lawyers spout the money damages they will get for the parents as they blame the doctors for negligence. Are you happy for the families who might get needed financial support that your family might have benefited from? Do you feel like it demeans your value as a person? Are you ambivalent? Send me an email using the contact us form and tell me what you think and I will post your comments here.
READ ABOUT STEM CELL RESEARCH AND OTHER MEDICAL INNOVATIONS…
Stem Cell Transplants Improve Recovery in Animal Models for Stroke, Cerebral Palsy http://www.playfuls.com
Joint-Preserving Operation for Osteoarthrosis of the hip in Adult Cerebral Palsy ANZ Journal of Surgery, Volume 70, Issue 6, pp 431-437, June 2000. A joint-preserving operation was performed on 15 hips with oeoarthrosis, involving 12 patients who had adult cerebral palsy. The research confirmed that usual treatment for osteoarthrosis of the hip was also applicable for osteoarthrosis of the hip in cases of adult cerebral palsy, provided sufficient attention is given to the complications accompanying spastic paralysis. http://www.blackwell-synergy.com
Selective Dorsal Rhizotomy - up-to-date information about selective dorsal rhizotomy (SDR), an accepted method for treatment of spastic cerebral palsy (CP). http://www.stlouischildrens.org
Aging and Cerebral Palsy: The Critical Needs. A Report from the Roundtable on Aging and Cerebral Palsy - On March 6-7, 1997, The Roundtable on Aging and Cerebral Palsy, a group of 18 people with cerebral palsy met in Washington, DC to discuss areas of concern. Building on this discussion, the participants drafted an agenda specifying areas in which research 1) would clarify the impact of aging on adults with cerebral palsy, and 2) suggest changes in technology, therapies and other treatments that would alleviate some of the difficulties associated with aging and disability. An interesting read – what has changed in the past ten years??? http://www.jik.com/awcp.html
Maximizing health in menopausal women with disabilities. (Welner, SL; Simon, JA; Welner, B) Menopause. May 2002, Vol 9(3): pp 208-219. There are nearly 30 million women with disabilities in the United States. Of these, more than 16 million are over the age of 50. The health needs of women with disabilities might differ from those of other women, special attention should be focused on how physiological changes of perimenopausal and menopausal states affect this population. In addition to functional changes that might affect menopausal women with disabilities, basic health maintenance issues may be adversely affected by environmental factors. Physical barriers can influence compliance with preventive health screening that is essential in aging populations. Treatment options might need to be tailored to the individual. The disabling condition itself may progress, resulting in secondary conditions requiring creative interventions. A comprehensive evaluation and the development of a suitable management plan, which takes into account the multifactorial nature of aging as a disabled woman, are essential in delivering optimal care to this population.
Handbook for Women with Disabilities
by Jane Maxwell, Julia Watts Belser, and Darlena David 2007, 384 pages, illustrated
English ed. ISBN: 978-0-942364-50-7
Women with disabilities often discover that the social stigma of disability and inadequate care are greater barriers to than the disabilities themselves. A Health Handbook for Women with Disabilities will help women with disabilities overcome these barriers and improve their general health, self-esteem, and abilities to care for themselves and participate in their communities.
This groundbreaking handbook was developed with the help and experience of women with disabilities in 42 countries—women whose disabilities include blindness, deafness, amputations, paralysis, learning difficulties, small stature, epilepsy, arthritis, and cerebral palsy.
http://www.hesperian.org/
WEBSITES THAT FOCUS EXCLUSIVELY ON -
Cerebral Palsy • Dystonia
CEREBRAL PALSY
E- Medicine & Cerebral Palsy http://www.emedicinehealth.com
United Cerebral Palsy - Health & Wellness http://www.ucp.org/ucp_channel.cfm/1/16
Centers for Disease Control & Prevention - Cerebral Palsy http://www.cdc.gov/ncbddd/dd/ddcp.htm
National Institutes of Neurological Disorder & Stroke - Cerebral Palsy: Hope through Research http://www.ninds.ih.gov/disorders/cerebral_palsy/
Kids Health for Kids - Cerebral Palsy http://kidshealth.org
(This can be a good resource for the children you know who ask about CP)
Academy for Cerebral Palsy and Developmental Medicine is a multidisciplinary scientific society devoted to the study of cerebral palsy and other childhood onset disabilities, to promoting professional education for the treatment and management of these conditions, and to improving the quality of life for people with these disabilities. http://www.aacpdm.org
Sexuality & Disability - Cerebral Palsy is a large website that focuses on disability and sexuality - this points to a specific page related to cerebral palsy. There are other pages focusing on other disabilities. http://www.sexsupport.org/CPResources.html
DYSTONIA
Dystonia Medical Research Foundation
http://www.dystonia-foundation.org/
Dystonia & Parkinson Foundation
http://www.dystonia-parkinsons.org/
NINDS Dystonia Fact Sheet
http://www.ninds.nih.gov/disorders/dystonias
We Move - Dystonia
http://www.wemove.org/dys/dys.html
Care 4 Dystonia
http://www.care4dystonia.org/
Dystonia Bulletin Boards - 5 Different ones http://www.dystonia-bb.org/
Dopa-Responsive Dystonia
http://www.drdcentral.com/
CLINICS SPECIALIZING IN ADULT CEREBRAL PALSY and OTHERS DEVELOPMENTAL DISABILITIES, Including DYSTONIA
The National Center for Cerebral Palsy and Related Disorders is a collaborative effort between the National Rehabilitation Hospital, Children’s National Medical Center, and Georgetown University Medical Center, that integrates research and clinical care to serve people with cerebral palsy, from infancy to old age. 30 different centers for care in the area surrounding D.C. Contact: 102 Irving Street, NW, Washington, DC 20010. Phone: (202) 877-1000 http://www.nrhrehab.org
The University of New Mexico - Adult CP Clinic is a Multidisciplinary Clinic Serving Adults with Cerebral Palsy and Related Neurodevelopmental Motor Disorder. The Adult CP Clinic is held every third Thursday of the month, from 9 a.m. to 12 p.m., on the 1st floor of the Center for Development and Disability. Contact: Alejandro Moralez, LISW, Continuum of Care, 2300 Menaul N.E., Albuquerque, New Mexico 87190. Phone: (877) 684-5259 http://www.unmcoc.org/clinics/adult_cp.htm
Rady Children’s Hospital Southern California Cerebral Palsy Center (SCCPC) offers a comprehensive approach to Cerebral Palsy including care of Adults with Cerebral Palsy. Adult Clinic appointments are available the 1st and 2nd Wednesday of each month from 8:30am to 10:30am. Contact: Dr. Henry Chambers, Director, 3020 Children’s Way, San Diego, CA 92123. Phone: (858) 576-1700 x-5362. http://www.chsd.org/body.cfm?id=555803
The Adult Cerebral Palsy Clinic of United Cerebral Palsy Association of Greater Indiana at the Crossroad Rehabilitation Center is a monthly clinic that provides comprehensive and continuing diagnostic and treatment services for people with cerebral palsy. Services include evaluations of speech, hearing, mobility, nutrition, rehabilitation needs and general health. A physiatrist assists patients in determining their need for adaptive equipment (braces, wheelchairs, etc.) and treatment. Contact: Crossroad Rehabilitation Center, 4740 Kingsway Dr., Indianapolis, IN 46205. Phone: (317) 466-1000. http://crossroads.easterseals.com
NYU-Hospital for Joint Diseases Comprehensive Center for Adults with Cerebral Palsy is the only university-affiliated institute in the New York City metropolitan region that provides state-of-the-art neurorehabilitative services to adults with CP. The CCACP is composed of a multidisciplinary team of health care professionals with expertise in the treatment and management of chronic neurologic disability. Specialties include neurology, neurosurgery, orthopedic surgery, physiatry,physical therapy, occupational therapy, nutrition, speech pathology, and social work. Contact: Lawrence Samkoff, M.D., Director, NYU Hospital for Joint Diseases,301 East 17th Street, New York, NY 10003. Phone: (212) 598-2323. http://www.med.nyu.edu/hjd/aboutus/
Lifetime Specialty Clinic is designed to provide specialized healthcare for adolescents and adults with cerebral palsy. The clinic is staffed by experts who have been a part of Gillette Children’s Hospital, providing care for children with CP for over 100 years. They have the equipment and staff necessary to lift, transfer, weigh and otherwise accommodate adult patients. For example, their scale can weigh someone who’s using a wheelchair,examination chairs recline, tilt and provide support and adjustable equipment makes pelvic examinations, X-rays and other procedures more effective and comfortable, especially for people who have such issues as spasticity. Contact: Gillette Lifetime Specialty Healthcare, 183 E. University Ave, St. Paul, MN 55101. Phone: (651) 2908707. http://www.gillettechildrens.org
The Center for Cerebral Palsy Spasticity recently began to offer dorsal rhizotomy for adults on the basis of our accumulated experience with the procedure on pediatric patients. To date, they report observing satisfactory functional gains in adult patients that are similar to those in children. Not all patients with spastic cerebral palsy (CP) benefit from selective dorsal rhizotomy (SDR). Contact: St. Louis Children’s Hospital, One Children’s Place, Room 4S20, St. Louis, Missouri 63110. Phone (800) 416-9956 http://www.stlouischildrens.org
DYSTONIA
Massachusetts General Dystonia Clinic is a part of the Movement Disorders Unit within the Department of Neurology, the Dystonia Clinic is a regional referral center for individuals seeking specialized care and treatment. Neurologists specializing in dystonia and related movement disorders evaluate individuals with cervical dystonia, generalized dystonia, writer’s cramp and many other types of dystonia. Contact: WACC, 15 Parkman Street, Boston, MA 02114 (617) 724-9234
WHY DIDN’T THEY JUST ASK US????
The lived body: experiences from adults with cerebral palsy (Sandström, K) Clinical Rehabilitation, 2007. Vol. 21, No. 5, pp 432-441. Conclusion : Interviews showed the importance for professionals to meet people with cerebral palsy as individual subjects in relation to functional problems, self-image and autonomy together with seeing the consequences of different coping strategies.
The health status of women with cerebral palsy. (Turk MA, Geremski CA, Rosenbaum PF, Weber RJ.) Archives Physical Medicine Rehabilitaton. Dec 1997, Vol.78, pp S10-7. Conclusion of article: Women with CP residing in the community perceived themselves as healthy, and the observed health status measures support this concept. Further investigation is warranted for a better understanding of their ramifications in the design of health promotion activities for women with CP.
Health Promotion for People With Disabilities: The Emerging Paradigm Shift From Disability Prevention to Prevention of Secondary Conditions (Rimmer, J.) Physical Therapy. May 1999, Vol. 79, No. 5,pp. 495-502. Conclusion of article: A greater emphasis must be placed on community-based health promotion initiatives for people with disabilities.
Pain in persons with cerebral palsy. (Schwartz L; Engel JM; Jensen MP) Archives Physical Medicine Rehabilitation. Oct, 1999, Vol. 80(10), pp 1243-6. Conclusion: The data suggest that pain is common in adults with CP. In many subjects, pain levels were moderate to intense.
Preparing for the future: aging and alternative and augmentative communication(Balandin S; Morgan J) Augmentative & Alternative Communication. June, 2001, Vol 17( 2), pp. 99-108. Conclusion: The results indicate that those involved in the AAC field must work with individuals who use augmentative communication to ensure that they maintain their health, well-being, and effective communication as they age.
Women With Cerebral Palsy and Breast Cancer Screening by Mammography (Poulos, AE; Balandin, S; Llewellyn, G; Dew, A.) Archives of Physical Medicine and Rehabilitation. February, 2006. Vol 87, (2), pp304-307 Conclusion: Education for health personnel as well as adaptation of the mammographic technique to suit the physical limitations of women with CP are critical to increasing participation and ensuring successful outcomes. Importantly, there is a need to identify women for whom having a mammogram is not an option and for whom alternative breast screening methods should be provided.
