The Only Constant is Change
There is a saying among HD families about medication, "No one medication works for everyone and no medication works indefinitely." Huntington's Disease symptoms vary among individuals. Individual responses to medication also vary and HD patients, like all patients with damage to the brain, are particularly susceptible to side effects. In addition, because HD is a progressive disorder, a medication that was effective in treating certain symptoms at one point may cease to be effective or even necessary later on.
HD families stress the importance of working closely with a doctor who will try a variety of medications and combinations to get the right ones for the individual, who periodically reviews medications, who lets you know what side effects to watch for, and who will appreciate your feedback on side effects and symptoms. If your physician doesn't already have this publication, you can contact the HDSA and ask them to send your physician a free copy of A Physician's Guide to the Management of Huntington's Disease, 2nd edition. www.hdsa.org
Many people also find it helpful to talk to their pharmacist about potential side effects and contra-indications of medications used singly or in combination and to check Pharmaceutical guides to medicine such as The Physician's Desk Reference. Online, people have reported using the following site to get more information about medications:
http://www.mentalhealth.com/fr30.html
It's a good idea to make a list of all medications, their dosage, when and how often they are taken, who prescribed them and why. Carry it with you when you visit a doctor or pharmacist. Also have it ready to take with you in case of medical emergencies.
People with HD also get other illnesses that are unrelated to HD and are treated by family practitioners and specialists in other areas. Share the medication list with the patient's other doctors and also let the doctor with primary responsibility for treating HD symptoms know what else has been prescribed and why.
A personal note:
It is especially important to keep reviewing medications when an individual has been placed in a nursing home. My late mother in law lived in a nursing home in a rural area for the last five years of her life. She was seen regularly by a general practitioner, a psychiatrist, and a neurologist, none of whom had had HD patients before. In addition, the physicians all changed when the management of the facility changed. At one point, when her condition worsened rapidly faster than we had expected, we got a 'second' opinion and found that her medical records weren't clear.
The correct diagnosis of Huntington's Disease should have replaced her previous incorrect diagnoses of Alzheimer's, Parkinson's Disease, Affective Schizoid Disorder, and Bipolar Disorder but was instead only added. As a result, she was being overmedicated and also being prescribed a contraindicated medication for Parkinson's patients. Further, the physicians were not consulting with one another about making medication changes.
At our direction, the primary physician took the responsibility for clearing up her diagnosis in the medical records, a note was put in the charts requesting that all medication changes be discussed with the primary physician, and an additional note requested that my husband, who was his mother's legal guardian, be notified of all medication changes. Not only did this eliminate future problems with the medication, but the improvement in my mother in law's condition astounded her caregivers, all of whom had assumed her worsening condition was a result of her disease. Her quality of life was excellent until just a few short weeks before the end of her life.
Provided by Marsha Miller, Phd.
Answers to this question can be found through these links:
- A review of the Treatment Options for Huntington's Disease
- Published by the Lighthouse with the permission of the journal Expert Opinion on Pharmacotherapy
