Another member of the multidisciplinary care team at a Huntington’s Disease Society of America (HDSA) Center of Excellence is a speech therapist. You think, how can that discipline help my loved one?
A speech-language pathologist (speech therapist), treats speech and swallowing disorders. They work with babies, children and adults to help improve communication skills. They can help if you have a developmental disorder, neurological condition or injury that prevents you from communicating effectively or consuming food or drinks safely.
She has wide experience with the care of those with neurodegenerative disorders, and has been a leader of our Center of Excellence since its inception. She provides critical expert and practical advice to families dealing with common Huntington’s disease (HD) issues, including coping with behavioral symptoms like irritability or loss of motivation, weight loss, or problems with swallowing.
Cecilia also assists patients and physicians navigate the health care system to obtain needed medications. As with all the disciplines on the multidisciplinary care team, their goal is to help HD families have the highest quality to their lives on their HD journey.
Physical therapist, Erica Pitsch, at the HDSA University of California, San Francisco HD Clinicis specialized in the care and rehabilitation of those with neurological disorders. She has been working with HD patients and families for many years, providing evaluations and formulating care plans across the entire disease spectrum, from designing exercise programs to preventing falls to finding the right gadgets to maximize independence. She works with patients in HD clinic for periodic consultations and tune-ups, but is also available for more regular treatment of patients.
Mara is a huge fan of a Multidisciplinary Care Team to care for Huntington’s disease (HD) patients and families. The core function of a multidisciplinary team (MDT) is to bring together a group of healthcare professionals from different fields in order to determine patients’ treatment plan.
Mara says, “The visits at the HD clinics can be a little long, but the vast majority of people appreciate the whole team approach. It keeps the patient and family from not having the drive to all those different appointments, not having to pay for all those copays separately and not having to repeat their whole story to each team member”.
On my blog today, I’ll share information on how multidisciplinary care team members at Huntington’s Disease Clinics (HDSA Centers of Excellence) can help Huntington’s disease (HD) families in the San Francisco Bay Area.
Let’s talk about what a genetic counselor can offer your family: The genetic counselor, Jamie Fong, at UCSF Huntington’s Disease Clinic has specialized training in the genetics of neurodegenerative disease, and has been counseling families and individuals at-risk for HD for many years. She is the lead in the HD predictive testing program, providing information, counseling and support to people at-risk for HD, but also is available to counsel those dealing with a new diagnosis or sharing the news with their families.
Dr. Sharon Sha, Stanford & Dr. Alexandra Nelson, UCSF
What is multidisciplinary care for Huntington’s disease (HD)? In the San Francisco Bay Area, Dr. Nelson, director at UCSF and Dr. Sha, director at Stanford Centers of Excellence, describe it as, “teamwork based on the complementary expertise of multiple individuals, with a goal of providing compassionate, knowledgeable, and accessible care to families coping with Huntington’s Disease . We understand the challenges of living with Huntington’s disease.”
Why is multidisciplinary care especially helpful for HD?
Dr. Alexandra Nelson states, “HD is complex and impacts the person with HD, but also her/his family and other loved ones. Symptoms range from changes in behavior and mood to changes in thinking, to loss of coordination and balance. This complexity requires a team approach, as well as collaboration with the patient and her/his caregivers. No one individual on the team has all the expertise, or the answers. Indeed, working on our multidisciplinary team is an incredibly fulfilling experience – we learn from our patients as well as from each other, so that hopefully we can be more helpful to the next family we work with.”
To find a Center of Excellence close to where you live, please visit: Locate Resources
To get started, let’s hear from Dr.AlexandraNelson, neurologist at the UCSF Medical Center Huntington’s Disease Clinic as she describes what a multidisciplinary care team can do for you and your family. “At UCSF, it is teamwork based on the complementary expertise of multiple individuals, with a goal of providing compassionate, knowledgeable, and accessible care to families coping with Huntington’s Disease.”
Through the years, I came to believe there is no such thing as coincidences, only reason and purpose. With that thought in mind, people don’t come into our lives by accident; they are meant to cross our path for a reason.
I came to this conclusion based on three incredibly kind women who came into my life along with John. Of course, they are my sisters-in-law, Lora, Marcia and Cindy Marin.
Kindness is at once very simple and very complex, with multiple layers and on the simplest level, kindness is showing consideration to others. I witnessed higher levels of kindness from Lora, Marcia and Cindy in the form of forgiveness, unconditional love and tenderness.
The nonfiction book I penned, Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s is much more than the Marin Family being challenged by Huntington’s but a story of love, commitment and devotion.
When I set out to write the memoir, my goals were to heighten Huntington’s disease (HD) awareness, honor my three (3) sisters-in-law and generate funds to donate to the nonprofit, Huntington’s Disease Society of America (HDSA). As the story unfolded, I was always brought back to one of the themes of the book, unconditional love. (other themes in the book are mindfulness and hope)
Watching Their Dance
Watching Their Dance is John and my enduring love story while living in the shadow of the HD. At the beginning of our marriage and HD journey, John and I committed that HD would not tear us apart, that our lovewould create a bond so strong that nothing could come between us.