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Treatment and Services

Our specialized multidisciplinary team of health professionals provide the highest level of clinical care for HD patients and their families.  In addition to primary neurological treatment and social services, our Center has an extensive genetic testing and counseling program, offers assessments and referrals for psychiatric services, counseling, physical therapy, and speech therapy.

 

Neurology

A comprehensive clinical assessment of persons at risk for HD is essential in making the diagnosis and advising patients and their families about what to expect.  Patients may choose to receive all their neurological care at the Center of Excellence or their primary neurologist may consult with the staff at the Center.  Neurological assessments are done by Karen Marder, MD, MPH, Elan Louis, MD, MSc, and Sara Janicki, MD, MPH.

 

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Psychiatry

Mark Groves, MD administers all psychiatric care at the Center. Because of the need for frequent psychiatric visits for many of our patients and the fact that many patients live far from the Center, we encourage patients who require intensive psychiatric care to have a local psychiatrist. Dr. Groves consults with local psychiatrists who may not have had previous experience with HD patients.

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Neuropsychology

A brief neuropsychological battery may be administered as part of the evaluation. These non-invasive, objective tasks identify subtle changes in memory, concentration, visuospatial skills, and executive functioning as HD progresses, and help to determine the effects of therapeutic interventions. Paula Leber Wasserman, MA, completes most testing at the Center under the supervision of Yaakov Stern, PhD.  If a more comprehensive evaluation is required, individuals will be referred to neuropsychologists in the Columbia University, Department of Neurology's Division of Aging and Dementia (see Columbia University, Department of Neurology, Taub Institute for Research on Alzheimer's Disease and the Aging Brain.

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Social Services

A psychosocial summary is completed on every new patient in the Center by Deborah Thorne, LCSW.  An important component of this is to be sure that our patients are aware of and know how to access their entitlements.  Counseling sessions are held in the Center with patients and/or family members as needed. Outside referrals are made for those patients and family members requiring ongoing counseling. Referrals are also made to attorneys, long-term care facilities, and day programs. All patients and their family are encouraged to complete their written Advance Directives.

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Rehabilitation Therapy: Occupational & Physical

Ashwini K. Rao, Ed.D, OTR is the occupational therapist and Lisa Muratori, PT, Ed.D, is the physical therapist at the HD Center. Services provided at the Center include evaluation of strength, posture, balance and gait, and recommendations for assistive devices such as weighted utensils, orthoses and footwear.  In addition, prescriptions for adaptive equipment to maximize function such as walkers and wheelchairs, and recommendations for exercise programs are provided.  Referrals to Occupational Therapy and/or Physical Therapy services in patients' local area are made upon request. More on Rehab therapy. See also Horseback-riding. Also see The Adaptive Sports Foundation for more information about staying active!

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Speech and Swallowing

Jeanne Thomson, MS, CCC-SLP, is the speech and language pathologist at the HD Center.  Ms. Thomson provides evaluation and treatment services for patients such as recommendations regarding seating, placement, food preparation and helpful hints for safer swallowing such as pacing, eating one consistency at a time and the use of therapeutic eating utensils.  As part of an evaluation, Ms. Thomson often requests that patients bring favorite or problem foods to eat during their evaluation.  Ms. Thomson also provides telephone follow up to ensure that swallowing strategies have improved and weight gain has begun. More on speech and swallowing.

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Genetic Counseling and Genetic Testing

Genetic testing reveals whether a person has the HD allele, and thus whether he or she will eventually develop HD. In order to make an informed decision, people need to have as much knowledge and guidance as possible.  We offer comprehensive genetic counseling and testing services.  The genetic counselor, Jill Goldman, MS, meets with individuals and families interested in presymptomatic or confirmatory genetic testing, post-test genetic counseling, and those who wish to discuss family planning options. For more information on testing and family planning options, see Genetic Testing.

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Nutritional Assessment

Ann Gaba, Ed.D, RD, CDE, is available to consult with HD patients who have nutritional concerns. See “HD Care and Planning” for more information on her high-calorie recipes and guidelines for a high calorie diet.

 

Support Groups

We currently offer two support groups through the Center that meet on a monthly basis.

  • The At-risk support group serves individuals who have a parent with HD.  Individuals considering genetic testing, have been tested for the HD gene, or who are at-risk but do not know their gene status are welcome.  For more information about the At-risk support group, please contact Katie Berry, LCSW at askkatie@gmail.com
  • The HD support group serves individuals who have been diagnosed with symptoms of HD.  This is the only support group exclusively for symptomatic individuals in the tri-state area.  For more information, please contact Paula Leber Wasserman at (212) 305-4597.
  • For more information about other support groups in the tri-state area, see support groups.  

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Appointments

The Center operates on most Fridays, from 8:00 AM to 1:00 PM, by appointment only. All appointments are confirmed by phone usually one week in advance. 

New patient appointments

New patient appointments take approximately 2-3 hours to complete.  Therefore, new patient appointments are scheduled for 8:30 am.  Prior to your first visit to the Center, an information packet will be sent in the mail confirming your appointment date and time, directions to the center, and a medical health history questionnaire. 

If you prefer not to receive any mail sent directly to you regarding your appointment, please notify the Center staff of your wishes.  For your convenience, you can find directions to the center here.  Also, you can print out a medical health history questionnaire here (pdf file). Please fill this form out to the best of your ability and bring it to your scheduled appointment. 

Follow-up appointments

In order to get the most out of your follow-up appointments, we kindly ask patients to arrive 15 minutes prior to their scheduled appointment time.  If your follow-up visit to the Center involves multiple appointments, please bring something to read, and something to drink as the nearest coffee shop and vending machines are some distance away.  Especially if you are meeting with several practitioners, you should expect some waiting time.

Cancellations

If you are not going to be able to keep your appointment for any reason, please contact Paula Leber Wasserman at (212) 305-4597 or email pl2032@cumc.columbia.edu as soon as possible.

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Columbia University Medical Center : Department of Neurology : Last updated 03-Nov-2014