2014 Faces of HD: Seeing through the Huntington's Disguise


Thursday, June 12, 2014 | 8:30 AM

Check-In: 8:30am

Program: 9:00am - 4:30pm

Saint Alphonsus RMC
McCleary Auditorium
1055 N. Curtis Road
Boise, ID 83706

For more information please contact: Jill Rice, Social Worker

208-570-3175 or jrice@hdsa.org

 

Agenda-

EVENT AGENDA 9:00am

Event Welcome & Logistics | Trevor Makinson, HDSA Southern Idaho, Affiliate Leader/President

9:10am - 10:10am

(1.00 CEU)

Welcoming Individuals with Huntington's Disease (HD) into Your Care Community | Jimmy Pollard, CHDI Foundation

Is caring for individuals with HD really 'special'? Are their care challenges too unique for assisted living and long-term care settings? Are their needs outside the experience of your staff? In this session, we will look at some of the features of HD, as well as some myths and misconceptions in assisted living and long-term care. We'll find answers to these questions and identify the breadth and depth of skills within our staff.

10:30am - 11:15am

(0.75 CEU)

Nutrition Intervention in Huntington's Disease | Becky Swartz, MS, Registered Dietitian

Even when caloric intake is adequate, severe weight loss remains a chronic symptom of Huntington’s Disease. The goals of nutrition intervention for Huntington’s patients are to maintain weight and prevent aspiration. We will discuss nutrition intervention and its role from initial diagnosis of HD to end-of-life decisions.

11:30am-12:15pm

(0.75 CEU)

We are Family! Placing HD in a Familial and Social Context | Anne Spencer, MS, CGC, Genetic Counselor

Helping someone with HD requires understanding them in their familial and social context. Since HD is a hereditary condition, many people with HD have seen or taken care of symptomatic family members, and may also worry about whether other family members (siblings, children, nieces and nephews) will develop HD. Understanding this history will help caregivers understand the person with HD and their families. This session will address:

• Inheritance of HD and genetic testing

• Growing up in a family with HD

• Living at risk for HD

• Importance of social support for HD families

• Finding social support resources for people with HD and their families

 

12:15pm - 1:00pm

LUNCH

served on-site and included in registration fee

1:00pm-2:30pm

(1.50 CEUs)

Hurry Up & Wait: Thinking About Thinking with HD | Jimmy Pollard, CHDI Foundation

Thinking with HD is a primary challenge to those living with it. Families have to work to understand how HD affects their loved ones' thinking - it takes their loved one longer to think about things, they can't wait for things, they may have a short temper, and the little things in life that they did unconsciously may now require conscious effort, and be more difficult as HD progresses. We see these difficulties but folks with HD can actually feel them. Understanding how it feels to think with HD often helps us to see problems in a new light, from the point of view of the person with HD. This is a series of interactive exercises that simulate how thinking with HD colors our interactions, and challenges how we communicate with one another.

2:50pm - 3:35pm

(0.75 CEU)

Huntington's Disguise | Jimmy Pollard, CHDI Foundation

As HD progresses, it often places a mask on the person you're caring for. They're the same person, but it's more difficult to see them behind the disguise. Understanding some of the more subtle physical and cognitive aspects of HD can help you see through this "Huntington's Disguise." Your loved one (or patient/resident) may not be bored, disinterested, angry, or unwilling, although they may appear that way to some. Underneath they are the very same person you have known, loved, and cared for through the years.

3:45pm - 4:30pm (0.75)

Raise Your Voice! Taking Action Through Advocacy & Clinical Trials | Trevor Makinson, HDSA Southern Idaho, Affiliate Leader/President; Sarah Weber, HDSA Clinical Trials Diplomat for the State of Idaho

During this session, we will hear the personal stories of Trevor and Sarah, and how HD has affected their lives. They will discuss how to become more involved as an HDSA Advocate, as well as current clinical trials and what they mean for the future of Huntington's Disease.

4:30pm

Closing Remarks & Evaluations



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