The HCMC Huntington's Disease clinic is located in the Center's Neurology department and provides patient care through weekly in-house admittance, monthly HD clinics and visits to long-term care facilities. Some of the clinic's HD patients represent families that have been with the HCMC clinic for three generations. Generational patient care facilitates strong understanding of patient histories and good patient-physician relations.
Every Wednesday, neurologists Dr. Martha Nance and Dr. Scott Bundlie provide care to HD patients through in-house admittance at the medical center. These appointments with the neurologists are generally for newly diagnosed HD patients, genetic testing consultations and medication changes.
Patients who require other services are advised to visit the clinic during the monthly HD clinic days which occur one Wednesday per month. One these days, a multidisciplinary team of specialists offers services including consultations in neurology, physical therapy, speech-language pathology, genetic counseling, occupational therapy, nutrition, neuropsychology, and social services. Dr. Nance lauds the clinic days as being particularly helpful because patients and their families can see several different physicians and specialists without the hassle of scheduling several appointments or coming to the hospital for multiple visits. HOPES members were able to visit Minneapolis on one of the HD clinic days to see how they are run.
Before the HD clinic opens, the staff holds a meeting to determine the needs of incoming patients. Dr. Nance reviews relevant medical history and highlights concerns that may arise for each of the approximately ten patients who visit on clinic days. By holding the pre-clinic meeting, the staff members are prepared for more meaningful interactions with patients. Following the meeting, the specialists disperse to tend to the patients. Dr. Nance greets most patients personally, inquiring about how the patient has been since his or her last visit. Check-ups for the HD patients are usually scheduled for every three months, so most patients have news to tell Dr. Nance whether it is about serious new symptoms or simply a recent family vacation.
In many instances, the patient's family and caregivers will accompany them to the clinic and can give insight into how the patient is coping with HD. Family members, particularly siblings and children of HD patients, may want to consider genetic testing. Genetic counselor Carol Ludowese talks with family members about their options for genetic testing. She can also give advice to younger family members about options like pre-implantation genetic diagnosis that would enable them to have children without passing on the genes for HD. For more information about genetic testing click here.
Following each of her consultations, Dr. Nance will report back to the rest of the HD clinic team who will go into the rooms to see the patients. The other specialists will then tailor visits and consultations to the needs of the patients and their families. In addition to finding out how the patients are doing holistically, Dr. Nance also asks more specific questions depending on the condition of the patient. Many of these questions are about topics that can be more thoroughly addressed by one of the specialists on the team.
Dr. Nance often asks about the patient's weight and eating habits. One of the common symptoms of HD is weight loss, and in the later stages of the disease patients' weights can fall significantly below healthy levels. If patients are showing drastic weight loss clinical dietician Stacey Payerl offers advice on how to maintain a healthy weight. Her recommendations often extend beyond what kinds of foods to eat to how caregivers can encourage food intake by making eating more enjoyable for the patient.
Speech-language pathologist Sally Gorski can also help patients who are having trouble maintaining a healthy weight. Patients find swallowing becomes more difficult as HD progresses, so she can administer a swallow exam to determine what kinds of foods are safe for a patient to eat without choking. To increase calorie intake and overcome swallowing difficulties, physicians often recommend that a feeding tube be inserted into the stomach. Dr. Nance emphasizes that whether or not a patient wants to have a feeding tube is an important issue to discuss early on because when the time comes to make the decision, the progression of HD may make it too difficult for patients to make the decision or convey their wishes to their families. Gorski can help patients and their families learn more information to help decide whether a feeding tube is right for them. Making the decision to have a feeding tube falls under the category of advanced directives, which Dr. Nance thinks are important to bring up to patients even during beginning stages of the disease.
While engaging the patients and families in conversation, Dr. Nance often asks patients to complete several motor tasks. Some of these actions include sticking the tongue out, walking a short distance, tapping the index and middle fingers against the thumb, and looking in different directions without moving the head. Watching the patients' performances helps Dr. Nance evaluate which stage of HD they are in according to the Unified Huntington's Disease Rating Scale (UHDRS). Physical therapist Susan Braun-Johnson and occupational therapist Mary Morgan LaGorio can provide more extensive advice to patients about their physical and motor symptoms, as well as ways to cope with these symptoms. For example, assistive devices can help in daily activity and changes within the home, such as installing additional bathroom equipment, can maximize safety. For more information about assistive devices and physical therapy click here.
Patients are also asked about their mental status and, if they are still formally employed, whether they are experiencing any difficulties at the workplace. These questions can help determine how behavioral and cognitive symptoms are progressing. If more thorough examination is needed, neuropsychologist Dr. David Tupper can administer several neuropsychological tests to determine how a patient's brain is functioning. Results from these tests not only help members of the HD clinic better understand their patients, but they can also be important for determining qualifications for social security disability.
Questions about disability determination and other topics related to social services can be answered by the social worker Lena Ross on the HD clinic team. She can advise HD patients about resources within the community. One of the recurring topics that Lena receives questions about is health insurance. Given the complex nature of health insurance, patients along with families and caregivers often find it difficult to understand how HD patients can manage their healthcare costs. Lena can also answer questions regarding care for the patients who are progressing into the later stages of HD. Many family members of HD patients find it difficult to balance their busy lives with caring for a loved one with HD. It is important for families to recognize that HD patients can receive meticulous care without becoming a burden for their family at home. If a patient begins showing more severe symptoms, it may be safer to consider other options, such as a long term care facility. In this regard, Lena helps HD families learn about and weigh the options that are available to them.
At the end of the day, the HD clinic team meets again to discuss the status of the patients. Many patients are scheduled for another visit in three months or, if necessary, follow-up visits within a shorter amount of time. Although official reports are documented for each patient, the post-clinic session helps the HD clinic staff familiarize themselves with the patients for more individualized care.
For patients who are in the later stages of HD and cannot go to the clinic in Minneapolis, staff from the clinic visit local long-term care facilities to provide care to HD patients. The HCMC Center of Excellence is affiliated with the Good Samaritan Society - University Specialty Center also located in Minneapolis. The facility provides long-term care to patients with several chronic diseases and has a unit for HD patients that can care for up to fifty patients. Dr. Nance organizes monthly visits to the Good Samaritan Society patients. Whether at the HCMC or the Good Samaritan Society facilities, the HD clinic continues to provide comprehensive and personal care to its patients.
Last Modified: 05/22/2009
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