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Huntington's Disease Support Information

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Index~HD Search

 Click on map for yellow pages
Texas State Flag  
Texas Affiliate of HDSA
President: 
Email: 
Address: 
 
Helpline: 
Toll Free
Fax:
Website: 
 
Becky Quandahl
P.O. Box 270261
Flower Mound, TX 75027-0261
1-972-724-1367
1-800-910-6111
1-972-539-7007
 
Social Worker
Contact
Address
 
Phone
Email
Cheryl Lenheiser LMSW-ACP
P.O. Box 270261
Flower Mound, TX 75027-0261
1-800-910-6111 [Dallas area]
txhd.socialworker@verizon.net 
 
Special Notices
Support Group Meetings
Abilene
When:       1st Monday of month
Time:         5:30 pm
Where:      Towne Crier
Address:
Contact:    Susan Kilpatrick
Phone:       (915) 691-9489

Austin
When:      4th Thursday of month
Time:        7:00 pm until 8:30pm
Where:     Seton Shoal Creek Hospital
                  Cafeteria Conference Room
                  3501 Mills Avenue
                  Austin
Contact:    Kim Krahn
Email:       Kimkrahn@sbcglobal.net 
Phone:      (512) 258-6567
 
Austin
Huntington's Disease Association of Texas
(not associated with the HDSA Chapter)
When:         Quarterly
Time:          Call for information
Where:        Little Walnut Library
                    Austin Texas 78757
Contact:      Peggy Maceo, Director  
Email:         HDATAustin@aol.com
Phone         (512) 453-6745
Website:      HD Association of Texas
Newsletter (PDF format):  HDAT Newsletter
Dallas/Denton/Ft. Worth
When:     3rd Tuesday of month
Time:       7:00 pm
Where:    Baylor Medical Center
                 In The Grapevine Center 
                 for Continuing Education
                 1650 West College
Contact:  Cheryl Lenheiser
Email:      txhd.socialworker@verizon.net 
Phone:     (972) 724-1357
 
East Texas (Minneola)
When:      Quarterly
Time:        Saturday
Where:    
Contact:    C.T. Almand

Phone:      (903) 473-3453

 
Greenville-Meetings have been disbanded

Houston
When:       2003:  Jan. 19, March 16, May 18,   
                   Jul 20, Sep 21 and Nov 16
Time:         1:00 to 3:00pm
Where:      Memorial Hermann NW Hospital
                   Conf Room A/Prof. Office Bldg.
                   Houston
Contact     Carrie Martin
Email:        carriem@bcm.tmc.edu
Phone:       (713) 798-5519

San Antonio
When:       3rd  Saturday  Quarterly
2003:          Feb, May, August and Nov
Time:         11:00 am to 1:00pm
Where:       North Central
Baptist Hospital - 
                   Executive Dining Room
Address:     520 Madison Oak Drive
                   San Antonio
Contact:     Gerleine Schoonover
Email:        
curehdnow@aol.com
Phone:       (210) 691-0047
Center of Excellence & Physicians
HDSA Center of Excellence
Baylor College of Medicine
Huntington's Disease Clinic
6550 Fannin, Suite 1801
18th floor of the Smith Tower
Houston, TX, 77030
Phone: 1-713-798-3953
Fax:     1-713-798-3128
Contact:   Lauren Tipton
Email:      
Phone:     (713) 798-5970
Fax:          (713) 798-6808
Website  HD Clinic
HD Current  research projects

Social Worker:
Carrie Martin, LMSW-ACP
Email:    carriem@bcm.tmc.edu
Phone: ( 713) 798-7438
Fax:      ( 713) 798-6808
 
Neurologists:
Patient Appointment
Phone: 1-713-798-7438
Fax:     1-713-798-6808
Joseph Jankovic, M.D.
Email: 
josephj@bcm.tmc.edu
 
Dr. William Ondo
 
Dr. Ronald Tintner
 
Dr. Madhavi Thomas
Email: madhaviv@bcm.tmc.edu

Genetic Counselor:
Katie P. Leonard, M.S.

Clinical Psychologist:
Lois C. Friedman, Ph.D.
Physicians-HD
HD Experienced Other Cities
 
The University of Texas Medical Branch
301 University Blvd. JSA9.128
Galveston, Texas 77555-0539
Phone  409-772-2466
Fax       409-772-2390
Website:  Galveston HD Clinic
Clinic Scheduling:
Tuesdays 1:00 pm to 5:00 pm
For appointments call:  (409) 772-7370
For additional information contact:
Martha Eguileor
Phone: (409) 772-2466
 
Physicians:
Neurologist: Tetsuo Ashizawa, M.D.
Professor and Chairman
Department of Neurology
 
Neuropsychologist:  Vicki Soukup, Ph.D.
Both Dr. Ashizawa and Dr. Soukup currently see  HD paitients.
 
Dr. Eric John Pappert, MD
PD & Movement Disorder Clinic
Department of Medicine
2379 NE Loop 410, Suite 12,
San Antonio, TX 78217
Appointments:  (210) 656-2333
Clinic hours:  Tuesday 12:00 - 5:00 PM
VA Neurologicaly Clinic:  Monday mornings
Speciality: Neurologist, Psychiatry/Board Certified
Genetic Testing Facilities-Other
Medical Center of Dallas
Department of Genetics and Metabolism
1935 Motor Street
Dallas, TX 75240
Contact:  Gail Brookshire, MS
Phone:     (214) 456-2357
Fax:          (214) 640-6233

Genetic Counseling Associates
14999 Preston D 212 #562
Dallas, TX 75254
Contact:  Karen Heller, MS, CGC
                 Certified Genetic Counselor
Phone:     (972) 458-8699
Fax:          (972) 458-9060
Scott & White Clinic
2401 South 31st Street
Temple, TX 76508
Contact:  Dr. Immken, MD, Geneticist
Phone:     (254) 724-0722
Fax:          (254) 724-1425

Southwest Genetics
7711 Louis Pasteur Drive
Oak Hills Medical Building, Suite 509
San Antonio, TX 78229
Contact:   G.A. Mengden, PhD
Phone:      (210) 615-8237
Fax:           (210) 615-8239
Long Term Care
Hospices
 
Hospice Support Care
Houston Hospice
El Campo, Tx
Contact:  Ms Ruth Kainer, RN
Phone      (979) 578-0314
Website: 
http://www.houstonhospice.org/
Nursing Homes HD Experienced
need your input
 
State Long-Term Care  Ombudsman
Texas State Long-Term Care
Department on Aging
4900 North Lamar Blvd., 4th Floor
P.O. Box 12786
Austin, TX 78751-2316
Phone:  (512) 424-6840
FAX:     (512) 424-6890
State Resources
 Homepage: Texas 
 
Insurance-Texas Consumers Guide To Getting and Keeping Health Insurance In Texas.
This Guide summarizes your protections, and so may not answer all of your questions. It is not a substitute for legal, accounting, or other professional advice.
 
 
Texas Health Care Planning Documents
 
General Info on  Right To Make Decions - Attachment 2
 
Directive to Physicians/ Living Wills Attachment 3
 
Durable Power of Attorney for Health Care Attachment 5
 
Designation of Health Care Agent Attachment 4
Physician or Physician/Family Determined Treatment Options  Attachment 6
 
Policies and Procedures Relating to Self-Determination  Attachment 7
 
Assignment of Right to Make Treatment Decisions  Attachment 8
Miscellaneous State Support
 
 
 
Guardianship Programs
A listing of guardianship programs in each state
 
 
 
 
 
 
Patient Advocacy Foundation State Locator
  L to W
Ensuring equal access to health care to all Americans. Find out what is available in your community.  Information available on (to mention only a few from the entire list): Children,  Children's Health Insurance Programs, Community Referral, Disability Services, Financial Assistance, Food Stamps, Health Care, Insurance, Legal, Medication/Drug Assistance and Special Needs
 
Private Fuel Funds
There are non-federal dollars available from local fuel funds, which frequently are contributed by your neighbors when they pay their utility bill. Ask the state energy assistance office for the local phone number of the fuel fund nearest your residence.
A directory of official state, county and goverment websites
 
 
Select from the list of State Benefit Program Contributors to read more about each State's benefits. To determine if you may be eligible to receive benefits you must select from the list of State Benefit Program Contributors and then click "am I eligible?" to begin the questionnaire.
 
State Resources-information or links related to Assistive Technologies, Disability Resources, Domestic Violence Legal Information, Family Legal Guides, Family Services, Guardianship Programs, Health & Human Services Quick Locators, Legal Assistance, Legal Forms - State & Federal, Long-Term Care Ombudsman Programs, Medicaid, Medicaid Waiver Programs, Social Security Offices, Summer Camp Programs, United Way~Local Support and more.
 
United Way-Search By Zip Code will provide you with information on the United Way in your area.  If they have a website, they usually have a section called "How Do I Get Help?"  Click on it and look for their "Quick Guide" (To Human Services) for help in your area. You can print it out.  Most guides are in PDF format and are a great resources to put on your refrigerator!
Other Resources
Applying For Government Benefits
Dental-Even if you cannot pay for dental care there are ways in which to receive help. Contact the American Dental Association (ADA) (1-800-621-8099) to learn about dentists who assist individuals on fixed incomes by offering their services at reduced fees.
 
 
 
 
 
GovBenefits.gov is a screening tool provided by the federal government to help you find government benefits that you may be eligible to receive.
Health Insurance in Texas - The Guide summarize your protections, and so may not answer all of your questions. It is not a substitute for legal, accounting, or other professional advice.
 
There is no way to cover all of the issues one might possible need to consider when selecting insurance coverage. Provides information on Free Care, General Information, Children, Claims & Insurance Rates, Life Insurance, Long Term Care, Medicaid/Medicare and Pre-Existing Conditions and more.
 
Other Support Resources
Activities of Daily Living 
Activities of daily living are a commonly used term in the health care and professional caregiving world to describe a person's ability to care for him or herself. In a progressive disease, such as Huntington's, measuring your loved one's Daily Living capabilities on a frequent basis (quarterly, semi-annually or annually) can provide you and their primary care physician the ability to evaluate the severity of the changes and develop a plan of care that allows for meeting both the physical and psycho-social needs of the care recipient.
 
Information covered on this link is resources which might help HD families apply for Government and State disability benefits; how to estimate your benefits; makes appeals; how your physician can assist you; and links to information for professionals such as HDSA Chapter Social Workers as well as other resources. The information is designed to provide general advice only.
 
Communication
Communication/Speech in Huntington's Disease. Currently have descriptions of several things causing problems in HD such as Aphasia, Apraxia, Miscommunication, Cognitive Issues, plus many more. More to be added when time is available.
 
Looking for prescription drug insurance? Find information on prescription drug plans and plans. Look up any medication prescribed, check on Alternative medicines, and learn about safety issues. Learn about the "sliding scale" if you don't have insurance. See the "New Drug Checklist-Q&A's", "Keeping Track of Side Effects" Over-The-Counter stuff and more. Also excellent links to Rx Programs, Benefit Check Up, Medicare, and discount pharmaceutical drug discount programs. Information contained on the individual pages of this site is provided for your reference and convenience only.
 
Avoiding Probate, Conservator~Guardianship, Estate Planning, Living & Other Trusts, Wills & Beneficiaries, Employment Issues, Financial Aids. Divorce Issues, Legal, Emergency Planning and more.
 
What Is A Feeding Tube? When To Consider One. Feeding Tube Decision in HD, Tube Feeding in Advanced Stages of HD,Using Baby Foods, Oral & Dental Care, Jean Miller Articles & Checklist and a ton of resources including charts to help in care.
 
This website provides helpful forms to families living with Huntington's Disease to help organize their daily caregiving needs. It contains DOZENS of forms you can use everyday, most of them are in Word format for easy printing and sharing!
HD Medical Definitions
An accumulation of definitions I found which are sometimes used to describe symptoms of/or tests for HD or discuss other diseases or condition which have symptoms similar to Huntington's Disease. The list is very long, but interesting!
 
Huntington's Disease Symptoms
It is extremely important that you are familiar with all the possible symptoms, which might be affecting the quality of life for the person with HD. The symptoms appearing in this section can either be related to Juvenile Huntington's Disease, Huntington's Disease in adults, some other condition, or be caused by a side affect to medication(s). This site is still being updated and developed.
 
Insurance
There is no way to cover all of the issues one might possible need to consider when selecting insurance coverage. Provides information on Free Care, General Information, Children, Claims & Insurance Rates, Life Insurance, Long Term Care, Medicaid/Medicare and Pre-Existing Conditions and more. If you would like more information on a particular subject, use one of the Search Engines to help you find it.
 
Information here is either directly about Juvenile Huntington's Disease, or other information, which will hopefully be helpful to families who have a child with JHD or are concerned about their child having JHD. Information from the old JHD site, which I can no longer access to make changes, is being moved here as time permits. When this is completed, this site will be deleted.
 
Caregiving articles written by Jean Miller, Betty Ann McDorman, Louise Wilkinson and others plus links to other articles.
 
There are quite a few articles that describe the various "stages" of HD. This site provides a Compilation of The [all] Stages Of HD. There are some resources available at the end of "stage" plus each one is in Word format for printing or sharing.
 
This section deals specifically with Swallowing problems associated with HD. It covers the description of problems in swallowing, therapies and products, questions to ask/FAQS, articles written specifically for HD, Safety & Warning Signs, brochures, special diets, the 5 levels of food consistency, testing procedures used to determine swallowing capacity, and more. Many items are available in Word for printing or sharing. Additional information and tips will be added as time permits.