HD can be broken down into 5 stages, described below. Some also generalize them and will refer to them as early, middle, and late stage. It may not always be clear what stage you or your loved one are in. A HD specialized medical professional can help guide you in identifying it.
*Note that specific symptoms can vary, both from person to person and also within any HD individual throughout the course of the disease.
Prodromal Phase (7-10 years before motor symptoms begin)
This is the phase of HD that marks the beginning of clinical symptoms, but occurs BEFORE motor symptoms occur. The person might have tested positive for the disease, but hasn't yet started showing motor symptoms. This is a great time to begin planning for a life with HD. You might notice that the person with HD has subtle and gradual changes in cognition and behavior. For example, they might be more irritable than normal, and may have increased depression or anxiety. Early intervention can make a huge difference in the quality of life.
Coping strategies for Prodromal Phase HD patients
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Now is a good time to discuss personal wishes with the person with HD about care, treatment, advance directives, and who they wish to help them through this journey.
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Get help with any psychological symptoms - they are treatable and with intervention can greatly improve quality of life. Be in tune to concerns around suicide and get prompt help. Check out the Therapy Path to talk to a knowledgeable counselor.
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Consider joining a clinical trial like ENROLL (http://enroll-hd.org/). HD patients who are trial participants tend to do better over time due to close monitoring, frequent visits, and support. Many HD patients also take pride in participating in a valuable trial knowing that it will benefit future generations. It will also help establish a baseline of symptoms.
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Learn all you can about HD and join a support group .
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Talk with your family and children about HD and the future. This will give you the opportunity to answer their questions and provide accurate information over time in ways they can understand. HDYO.org is a great resource of information for children and parents.
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As motor symptoms begin to develop, give the person with HD extra time for everything.
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To learn more about the early stages of HD, check out HD Buzz (https://en.hdbuzz.net/207).
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Meet with an attorney and a financial advisor to get advanced directives and estate planning set up and out of the way.
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Strengthen relationships - affirmations, encouragement, and familiarity are all helpful.
Stages 1 and 2 (Early HD)
A diagnosis of HD is made when motor symptoms occur. At this point the person has normal or mildly reduced work ability and might need some help with finances. The HD patient can still live independently and typically experiences minimal impairment in activities and chores. Psychiatric symptoms are intermittent and manageable and emerging motor symptoms might become more identifiable.
Coping strategies and ideas for Stage 1 and 2 HD patients:
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Productive, decision-making conversations should be continued or started about the rest of the patient’s life.
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Attention should be paid to any minor problems experienced in the workplace. An HD patient may be able to seek accommodations from an employer.
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A healthcare team should be built proactively.
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Attend support group sessions.
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Assess long-term care options and establish future preferences. Identify financial resources for long-term care. We can help ease the burden of making these difficult and time-consuming decisions.
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Learn about all available emergency resources so they’re ready if needed.
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If you aren't in a clinical trial , consider participating in one now. You'll receive close monitoring, frequent visits, and support while helping future generations.
Stage 3 (Mid-Stage HD)
Once a person reaches the third stage of Huntington’s Disease, it’s a good time to implement plans for the future. During this stage, walking, eating, and communicating become affected. There may be some noticeable impairment as it relates to money management and cognitive symptoms become less treatable than they were in the earlier stages. Frustrations easily mount and a patient is typically at a high risk of suicide during this time.
Coping strategies and ideas for Stage 3 HD patients:
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Monitor the patient’s physical safety—problems with difficulty swallowing or choking tend to begin around this stage and falls become more frequent.
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Utilize physical therapy to help strengthen and tone core muscles in order to lessen falls and make walking easier. HD Reach can help you find a knowledgeable provider in your area.
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Stop driving. Now is the time for friends and a support group to make this difficult transition as smooth as possible.
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Implement a structured daily routine.
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Apply for Social Security Disability (SSDI).
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Utilize resources (psychiatrist, therapist, social workers, and caregivers) to identify psychiatric concerns because this is typically when depression, anxiety, irritability, and obsessive thoughts and behaviors frequently occur. Caregivers can attend a Calming Irritability Workshop to learn how to cope with changing behaviors.
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Attend support groups to reduce isolation and learn how others are coping with HD.
Stages 4 and 5 (Late Stage HD)
During the final stages of Huntington’s disease, all areas of functioning become severely impaired. At this stage, total care is often needed and many patients enter long-term care facilities. Chorea can be severe or movements can become rigid or stiff.
Coping strategies and ideas for Stage 4 and 5 HD patients:
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Obtain high-quality, long-term care you can afford. Weigh the long-term care options (for example: in home companions, home health care, long-term care facilities, skilled nursing facilities, and/or hospice) in order to select the option that makes the most sense for you and the person with HD.
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Prepare a scrapbook featuring pictures and meaningful stories that describe a patient’s life to help the long-term staff help in an engaging and familiar way.
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Rely on family members and other loved ones to give respite to caregivers because unity and support will be more important now than ever before, for both caregivers and the patient.
If you or a loved one is having trouble understanding the stages of HD or if you want more information, contact us and we’d love to answer any questions and help provide support, guidance, and additional resources.
