Question:  What are my husband’s HD symptoms going to be like in the future?

Answer: 

I would love to be able to answer your question with detailed information but unfortunately, there is no way to do so.  The progression and symptoms of Huntington’s disease vary from individual to individual.  Although each individual’s symptoms are different, most people with HD experience increasing problems in three interconnected areas: cognition, motor, and psychiatric in a roughly five stage progression.  Some professionals also use a three stage progression model. 

In stage 1, usually when someone is first diagnosed, there are both observable and discrete symptoms, but he will probably still be able to manage independently at work and home.  There might be some involuntary movement as well as a small decline in coordination, perhaps some difficulty with thinking and problem solving.  There also might be some psychiatric changes.  Some individuals experience depression, irritability, or disinhibition.   In stage 2, the symptoms may become more pronounced.  He will probably still be able to manage some work independently but not at the level he used to and at home there may be some activities that are beginning to be difficult.  In stage 3, he will need help performing daily living tasks.  Employment may be no longer possible.  There may be problems with falls as well as swallowing and weight loss.   When he needs support for most activities of daily living but with that support can still live at home, he is in stage 4.  When he needs total care, including nursing, he is considered to be in stage 5.  At this point, an individual may be bedridden and nonverbal but is still able to comprehend what is happening around him.

The descriptions of these stages are purposely very general because HD affects each person differently.  There is also no concrete time frame for how long someone with HD will experience each stage.  Your husband might have a lot of motor problems early on but his memory remains intact even at the advanced stage of HD.  Someone else may have had years of depression and anxiety that have taken away his independence, yet he is walking, talking, and eating without difficulty.  The most important thing to do is to find ways to support your husband in the most respectful and caring way possible. 

There will be a lot to do as you and your husband face the challenge of living with HD.  Read and learn as much as you can.  Go to your husband’s medical appointments with a written list of questions about your husband’s progression.   You may find it helpful to attend support groups, your local Chapter’s educational conference, HDSA’s Annual Convention, or explore the HDSA publications list, found here.  For information on all of these and additional supports available, call HDSA at 1-800-345-HDSA (4372) or visit our website at www.hdsa.org to find your local social worker.  You will want to develop a team of professionals such as doctors, therapists, social workers, etc as well as friends and family who will support you both through the changing needs of HD.  The more you know, the better prepared you will be to meet the ever changing challenge of caring for a loved one with Huntington’s disease.

Joanne M. Luz, HDSA Eastern Pennsylvania and Delaware Chapter Social Worker