This complementary guide is provided to you by Kinetic Balance physical therapy, with the hope that it will be a
good source of information about all the services, information sources and products available in northern Virginia
to manage degenerative ataxia.
Ataxia can have many underlying causes and this brochure is not intended to be a thorough book on the subject
or replace the advice of your doctor. It is a work in progress and a reference where you can find links to website
and information about locally available resources that will help you make the many decisions you will be faced
with as your symptoms evolve.
As you will see throughout this webpage, the advice of a knowledgeable physical therapist becomes
indispensable to maintain your independence throughout your changes in functional status.
We hope that all these resources will allow you (or someone you love) to live fully and independently with the
challenges of Ataxia.
What is Ataxia?
The Miriam-Webster dictionary defines Ataxia as an inability to coordinate voluntary muscular movements that is
symptomatic of some central nervous system disorders and injuries and not due to muscle weakness —called
also incoordination
www.merriam-webster.com/dictionary/ataxia
Ataxia can be a symptom of many different diseases, some degenerative and some not.
Below are some of the common causes of ataxia and a list of the websites containing useful information about
their causes, symptoms and treatment.
Friedreich’s ataxia (FRDA), although rare, is the most common degenerative inherited ataxia. It is caused by an
abnormality in the Frataxin Gene.
For detailed information on Friedreich’s ataxia pathology the following associations and their websites are a good
source of information:
Friedreich’s Ataxia Research Alliance: www.curefa.org
Other autosomal recessive early-onset ataxias:
Ataxia-telangiectasia: National Organization to Treat A-T: http://www.treat-at.org/
Marinesco-Sjogren syndrome
- ataxia with short stature, mental retardation, and cataracts
www.sjogrens.org
National Institute of Neurological Disorder and Stroke:
In English:
http://www.ninds.nih.gov/disorders/friedreichs_ataxia/detail_friedreichs_ataxia.htm
Information en Espanol:
http://espanol.ninds.nih.gov/trastornos/ataxia_de_friedreich.htm#external_groups
National Ataxia Foundation:
www.ataxia.org
Mayo Clinic:
www.mayoclinic.com/health/ataxia/DS00910
John Hopkins Movement Disorder Center:
www.hopkinsneuro.org/movement_disorders/disease.cfm/condition/Ataxia
Ataxia can also be a symptom in
Multiple sclerosis (www.nationalmssociety.org)
Pakinson’s disease ( ww.pdf.org and www.parkinsons.org)
How is it transmitted?
Many of the above described ataxia are transmitted through mutated genes through various genetic
combinations, If you suffer from a genetic ataxia, you might benefit from genetic counseling in order to learn what
the transmission process is for your particular disease in order to determine the risk to pass it on to your children.
For information on genetics and genetic counseling referrals, please contact:
Alliance of Genetic Support Groups
4301 Connecticut Avenue, N.W., Suite 404
Washington, D.C. 20008-2304
(202) 966-5557
(800) 336-GENE (4363)
Home page: http://www.geneticalliance.org/
Treatment/ diagnosis resources
Because these degenerative ataxias affect many systems, a multidisciplinary approach is necessary to manage
the disease. The following assessments are recommended 1
• Neurological assessment
• Physical therapy and occupational therapy assessment of strength, balance, posture and need for
adaptive aids
• Speech and swallowing assessment
• ECG and echocardiogram for evidence of cardiomyopathy; assessment by a cardiologist if abnormal
• Assessment of significant scoliosis by an orthopedic surgeon
• Bladder function
• Hearing
• Random blood glucose concentration for evidence of diabetes mellitus
• Genetic counseling
The treatment is then tailored to the symptoms founds during the assessment, and requires the cooperation of
multiples health care specialists.
• Physical therapy:
o for advice and fitting of adaptive equipment including walking aids, wheelchairs, adaptive technology and
to maintain an active lifestyle for as long as possible.
o For balance and gait training to maintain independent ambulation and decrease the risk of falls.
o To manage spasticity through stretching programs, standing frame and splints,
o Non operative orthopedic intervention to prevent and/or reverse joint deformities, scoliosis, foot deformities.
• Occupational therapy assessment to ensure a safe home and work environment and maximum
independence
• Speech therapy to maximize communication skills and to manage dysphagia that may include dietary
modification and, in the late stages of disease, use of nasogastric or gastrostomy feeding
• A Cardiologist can design a treatment for any cardiac problem, including standard anti-arrhythmic agents,
anti-cardiac failure medication, anti-coagulants, and pacemaker insertion. Cardiac transplantation is more
controversial.
• An endocrinologist to design a treatment for diabetes mellitus with oral hypoglycemic agents or insulin as
needed
• Hearing aids as needed
• Antispasmodic agents for bladder dysfunction
• Psychological support for affected individuals and family
Therapies currently under investigation:
To read the latest research on the treatment of FRDA, or to participate in a study, consult the website of the
Friedreich’s Ataxia Research Alliance at www.curefa.org
For the latest in ataxia research consult the national ataxia foundation’s website: www.ataxia.org
Family Support & Resources
Coping and support
Living with ataxia can be extremely frustrating. The challenges ataxia represents, such as loss of independence,
may lead to depression and anxiety. You may find that talking to a counselor or therapist can help you cope. Or
you may find encouragement and understanding in a support group, either for ataxia or for your underlying
condition, such as cancer or multiple sclerosis.
Although support groups aren't for everyone, they can be good sources of information. Group members often
know about the latest treatments and tend to share their own experiences.
Caregiver resources:
Internet Support Groups:
A list of online resources for caregivers in general can be found at http://www.ataxia.org/resources/caregivers.
aspx
The resources below are more focused on the challenges of being a caregiver to somebody with ataxia:
The Friedreich's Ataxia Parents Group (FAPG) is a closed list, limiting subscriptions to parents & guardians of
children with Friedreich's Ataxia (or other childhood onset ataxias). From all over the world, parents who are
having similar experiences raising children with FA communicate with one another.
http://www.fortnet.org/fapg/subscrib.htm
FA_babelFamily is an independent multilingual mailing-list born in order to become a source of information for all
people coping with Friedreich's Ataxia in Europe and worldwide. All messages dealing with what is being done in
the field of scientific research and fund-raising in order to reach a cure for FA are particularly appreciated.
http://health.groups.yahoo.com/group/FA_babelFAmily/
INTERNAF is an international e-mail based forum to exchange information and support for those who are
diagnosed with ataxia. Open to patients, families and friends.
http://internaf.org/
The Chesapeake Chapter of The National Ataxia Foundation (AKA: CC-NAF)
Offers a bi monthly meeting at different locations with speakers on the subject of Ataxia. To join or for more
information:
http://www.geocities.com/HotSprings/Oasis/4988/about.html
Adaptive equipment/technology resources:
As your movement abilities change, consult with your physical ( PT), occupational ( OT) and/or speech therapist (
ST) who can all be a great source of advice and information on how to regain your independence through
movement strategies, a balance and therapeutic exercise program or maintain your independence through the
use of adaptive technology and equipment.
Kinetic Balance’s physical therapist specializes in neurological conditions is trained in the treatment of Ataxia, she
can help you navigate through all the options.
Local and online resources for adaptive technology and equipment:
Ability magazine
Their link webpage is a very thorough source of resources for anybody dealing with a disability, it has great
information on job seeking and even a job search/resume posting for job seeker who have a disability.
http://www.abilitymagazine.com/links.html
Lowes hardware store: raised toilets, tub and shower seats, grab bars
www.lowes.com
Home Depot: raised toilets, shower seats, grab bars
www.homedepot.com
Sears Home Medical Catalog: Sears carries a whole range of wheelchairs, lifts, chairs in the health acre section
of their website. www.sears.com
Roberts Home Medical
1800 gatehouse Road
Falls Church, VA 22014
703-385-8018
http://www.robertshomemedical.com/index.htm
Zask Medical Supplies
4600-C Pinecrest Office Park Dr.
Alexandria, VA 22312
Ph: 703.354.1266 Fax: 703.354.1269
Email: info@zaskmedical.com
http://www.zaskmedical.com
Sammons/Preston Catalog:
Tel: 1-800-323-5547
www.sammonsprestonrolyan.com
Getting a wheelchair
When the time comes to choose a wheelchair, Inova Mount Vernon Hospital has a wheelchair clinic to assist
individuals who are primary wheelchair users in obtaining the most appropriate chair and seating system.
Evaluations are performed by an occupational or physical therapist for manual chairs, power/electric chairs, back
systems and seat systems. Current wheelchair users also will be assessed for any new modifications.
http://www.inova.org/rehabilitation/specialized_services/wheelchairclinic.jsp
For the latest news in adaptive technologies, an easy to follow guide on how to get a wheelchair, and more links
to dealers and organizations:
www.wheelchair.org is a great website.
Schooling for the child with Ataxia
The following is an exert from the curefa.org webpage listed at the end of this paragraph:
A child diagnosed with Friedreich's ataxia is served by the Individuals with Disabilities Education Act (IDEA). This
law entitles your child to have an Individual Education Plan (IEP), which provides a blueprint for how the child's
education needs must be met. IEP teams, usually consisting of parents, administrators, teachers, and sometimes
the student and outside experts, meet to craft each child's IEP.
The curefa.org website also has a lot of success stories from parents about getting their child in the public
schools.
http://www.curefa.org/message.html#schoolA
The website for Fairfax county Public Schools is www.fcps.edu, for Loudoun county public schools http://www.
loudoun.k12.va.us
Finding work:
Discuss with your physical therapist what type of work would best fit your physical status. You may be surprised
at the number of things that can be done to accommodate your abilities and disabilities so that they do not
prevent you from finding the job you always wanted.
ADA Watch is a project of the National Coalition for Disability Rights, an alliance of hundreds of disability, civil
rights, and social justice organizations united to defend and promote the American with Disabilities Act (ADA) and
the human rights of children and adults with physical, mental, cognitive and developmental disabilities.
The website is full of resources and links about disability and the ADA.
http://www.adawatch.org
Ability magazine
Their link webpage is a very thorough source of resources for anybody dealing with a disability, it has great
information on job seeking and even a job search/resume posting for job seeker who have a disability.
http://www.abilitymagazine.com/links.html
Leisure Activities
Northern Virginia has a variety of leisure activities for people with physical challenges. Your physical therapist
can help you determine what program would best fit your interest and abilities. Below are some ideas and links to
get you started:
General:
EnDependence of Northern Virginia, Inc
Has a comprehensive list of activities both sports and recreational for person with disabilities.
http://www.ecnv.org/FAQ/sports.html#q2_5
Fairfax county Park authorities
Adapted swimming, gymnastics and recreation
http://www.fairfaxcounty.gov/rec/Trs/
Examples of activities available in northern Virginia:
Horseback Riding - Therapeutic and Recreational
NARHA
P.O. Box 33150
Denver, CO 80233
Ph: 1 (800) 369-7433
Promotes therapeutic riding by accrediting the various therapeutic riding programs and also certifies instructors.
Maintains a list of members, certified facilities, and is an excellent source of information.
www.narha.org
International Wheelchair Aviators (IWA)
P.O. Box 2799
Big Bear City, CA 92314
(909) 585-9663 (Voice)
(909) 585-7156 (FAX)
IWAviators@aol.com
www.wheelchairaviators.org
An organization created for persons with disabilities interested in flying. IWA has many resources, lists types of
hand controls for planes, has "Fly-in's" and is open to everyone.
American Canoe Association
7432 Alban Station Blvd, Suite B-226
Springfield, VA 22159-2311
(703) 451-0141 (Voice)
www.acanet.org
Offers training courses on canoeing for individuals with disabilities as well as being an excellent resource for
information on canoeing.
Virginia Department of Game and Inland Fisheries
Wildlife Division
4010 West Broad Street
P.O. Box 11104
Richmond, VA 23230-1104
(804) 367-1000 (Voice/TTY)
Persons with a disability may obtain a special lifetime hunting license and fishing license for $5.00 each as well as
a permit to hunt from a vehicle and a permit to hunt with a crossbow.
Books
The Official Parent's Sourcebook on Friedreich's Ataxia: A Revised and Updated Directory for the Internet Age by
Icon Health Publications, Health Publica Icon Health Publicationsa
Resource guide
to
local and online resources
to live fully
with the challenges of degenerative ataxia in
Northern Virginia.
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