Real Stories

Managing Life with HD, One Day at a Time

Matt's HD-related chorea made it difficult for him to do even the simplest things. Read about the changes they had to make—and how Xenazine helps Matt control his chorea and enables him to carry out his daily activities.

Matt and Karen had only been married for a few years when they noticed Matt was exhibiting the onset of early symptoms associated with Huntington's disease. The symptoms started with chorea—small, uncontrolled movements—as when Matt's hands twitched when he didn't want them to. The movements became so severe that Matt was not able to drive his car nor do one of the things he enjoys most: gardening.

As Matt's symptoms worsened, Matt and Karen were forced to make a number of changes in their lives. Matt had to quit his job, and Karen had to pick up more hours at work to cover normal expenses. They purchased plastic dishes to eliminate the daily shattering of the ceramic dishes they had been using, as well as a new coffee maker that operated with a simple push-button so that Matt could brew his own coffee.

Matt and Karen anticipated that proper medical care and emotional support would be imperative in managing Matt's disease as it worsened, so they decided to move to their current home. Now they were only 30 minutes away from access to specialists able to help Matt manage his HD, and more specifically, his chorea. Soon after their move, Matt and Karen connected with a neurologist at a university hospital. Their neurologist recognized the difficulties Matt was experiencing in managing his chorea and the impact the condition was having on both Matt and Karen's daily life, so she started Matt on a new medication for chorea associated with HD. While on the medication, Matt saw a noticeable change in the amount of chorea he was experiencing.

You or your loved one’s results may be different. Always talk to your doctor about your medical condition and discuss treatment options that are right for you.

While Matt's chorea continues to be managed better as a result of his medication, Karen's role as a caregiver continues to evolve. It was not an easy task, but Karen has learned how to juggle her new responsibilities in helping Matt carry out his daily activities, as well as her increased hours at work. But the first thing she acknowledges is that she hasn't done it alone. They have a lot of help from friends and family that they refer to as their "support team."

On days when Karen needs to be at a work unexpectedly, she relies on her "support team" to take Matt to scheduled doctor's appointments. Or, if she gets held up at the office, the team will be on point to go to the house and make sure that Matt is getting through the day.

Karen has also made it a point to let Matt have the last word on family decisions, household changes and ideas for their future. Feeling engaged and in control in these decisions has helped Matt's outlook on his future, as well as Matt and Karen's relationship overall.

While Karen and Matt know that the future will hold even more changes—they have already discussed removing the railing on their stairs and moving their bedroom to the first level of the house—they are learning to live each day they have together to its fullest. Keeping faith and having the support of family and friends helps them keep smiling and striving to manage HD one day at a time.

Your results may vary. Always talk to your doctor about your medical condition and what treatment options are right for you.