Dysphagia in Huntington Disease

View the video on HDSCN’s YouTube Channel

Introducing Aundie Werner, MS, CCC-SLP, Speech Language Pathologist from Dignity Health and Marian Health & Wellness Center, Santa Maria, California. She presented an incredible seminar on dysphagia in HD at the HDSA/HDSCN Support Group meeting on August 8, 2016.

Aundie has been a speech therapist for 22 years, works primarily with adults and neurogenics, and taught at University of Texas at El Paso for a while. She works with all conditions that present with dysphagia. She says, “Swallowing is a very important issue, and it’s a quality of life issue.”

Aundie goes over the different stages of swallowing and different problems that might occur with HD patients. HD presents unique physiological challenges, which she explains in detail in her presentation. (See the video). Get the handouts here.

She teaches about the mechanics of eating, chewing and swallowing. In HD the epiglottis sometimes works in reverse and doesn’t cover the airway when the patient swallows; that’s when the patient can aspirate. When that happens the patient may feel anxiety and stress about eating. Most of us take eating and swallowing for granted. Find out how caregivers can help manage the challenges that HD individuals face with eating and swallowing.

Aundie discusses options for thickened liquids, different products that are available to address the needs of each patient. Print out the handouts and follow along with the video for a very informative and educational experience.

Visit HDSCN’s YouTube Channel for more information on this topic and more.

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Advanced Health Care Directives

AHCD with Lana Clark
View the video on HDSCN Youtube

A seminar by Lana Clark, Attorney at Law on power of attorney, advanced health care directives and conservatorships, was the highlight of our Santa Maria HDSA/HDSCN Support Group meeting on July 11, 2016. The number one important message that was received from this seminar was, if you don’t have an advanced health care directive and a power of attorney, what you will get is a conservatorship. If you get into an accident and you are not able to make decisions for yourself, without a power of attorney or advanced health care directive, someone in your family will have to petition the court for a conservatorship until you recover. Visit Lana’s seminar video on YouTube.

There are different types of advanced health care directives, as we learned, but the one that is most highly used at health care facilities is called “Five Wishes”, found at www.agingwithdignity.org, which is a very comprehensive document and is available for every state. You must have this document signed by two witnesses (or) signed and notarized for it to be valid. Keep in mind that if you or your loved one is in a nursing home, their on-site ombudsman must also sign the document.

Thanks to a generous donation from Teva Pharmaceuticals, “Five Wishes” is available to you at no charge. To fill out your own copy of this document, click on the Five Wishes link in this paragraph. We have a limited number of copies available, so please, if you don’t have an Advanced Health Care Directive yet, now is the time to get one done.

A conservatorship is for adults. In persons under 18 it would be called a guardianship. There are different types of conservatorships: temporary or permanent; estate (managing just the finances) or the person, or both. Conservatorships are both expensive and time consuming. You will have to file a petition with the court based on the person’s specific situation and needs once a year. You will have to file annual accounting with the court and they will have to approve the accounting. As a safeguard and protection, the judge will oversee everything in a conservatorship.

Advanced Health Care Directive
CA End of Life Option Act
Living Trusts Brochure

Visit HDSCN YouTube Channel for more information on this topic and more…

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What We Do

HD Support & Care Network, Inc. is a 501c3 nonprofit organization founded by Melissa Biliardi, and continues a tradition of dedication to the needs of HD families that began in 2010. In Melissa’s search for information, support and care for her own sons afflicted with Huntington’s disease, she discovered her life’s mission: Helping Huntington’s disease families find resources.

HDSCN is a free service provided to HD families. Our mission is to help HD families find resources for support and care options. HDSCN really understands the unmet needs and we are here to help.

HDSA/HDSCN Support Groups provide a safe and confidential place to defuse from the stress of caregiving and to find comfort and care options for their HD loved ones. HDSCN is proud to announce our partnership with the Huntington’s Disease Society of America (HDSA) by co-branding our new support groups in the underserved areas of California and Arizona we will have even more resources and help for our HD families. Our support groups will provide:

  • Caregiver Support & Education: One-on-one consulting and group meetings with clients;
  • HDSCN Support Groups: Co-facilitated by Licensed Clinical Social Workers (LCSW) to assure professional oversight;
  • Support Group Start-up: Ready to help others who wish to start their own support groups with professional oversight;
  • Clinical Trials: Current clinical trial and clinical study information is available at HDSCN.

HDSCN Care is focused to help HD families find the best possible care options specifically for HD management:

  • Care Providers: HDSCN connects with many different disciplines because many are necessary to care for HD:
    • Centers of Excellence, Psychiatry and Psychology, Physical Therapy (PT), Occupational Therapy (OT) and Speech Therapy;
    • Medication Management;
    • Emergency Services, Suicide Prevention;
    • Addiction and Substance Abuse;
    • Assisted Living, Board & Care, and Nursing facilities;
    • Hospice & Palliative Care;
    • End of Life Resources, Organ Donation;
  • Basic Needs Referrals: to address basic needs like food, clothing, housing, nutrition, medical equipment, transportation, etc.

HDSCN Network collaborates with many service agencies and organizations because many resources are necessary to manage HD:

  • Community Outreach: to help more HD families in need get connected to their community and the resources they need;
  • Regional Networking: to help HD families find resources in their local area;
  • Develop Associations: In Home Caregiver, Home Health Care and Hospice Agencies;
  • Connecting: with Community and Social Services Agencies and other Charities;
  • Legal Referrals: Law Enforcement, Power of Attorney, Healthcare Directives, Conservatorships, Wills, Estate Planning, and much more.

CONTACT: Melissa Biliardi at 805-354-0708 or email at melissa@hdscn.org.