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Huntington's Disease Caregiving

Early/ Early Intermediate Stages
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CLINICAL DEFINITIONS
Early/ Early Intermediate Stages
Stated in positive terms from the person's point-of-view.

Defiance

"I'm not denying the diagnosis, I'm defying the verdict! I'm not refusing to accept it, I'm just boldly resisting the inevitable!"

Perserverance

"I'm continuing on...in spite of all the difficulties this damn disease puts in front of me."

Early Stages

Early in the disease, manifestations include subtle changes in coordination, perhaps some involuntary movements, difficult thinking through problems, and often, a depressed or irritable mood.

At this stage, medications are often effective in treating depression and other emotional symptoms. It is a good time to begin planning for the future. Financial plans should be made and legal documents drawn up.

 Early Stage

The person is diagnosed as having HD and can function fully both at home and work.

In addition to the physical symptoms of HD, there are often subtle cognitive signs as well.

Initial stages

People with early Huntington's may find they have difficulty organizing routine matters or coping effectively with new situations. Difficulty recalling information may make them appear forgetful.

Work activities may become more time-consuming, and decision-making and attention to detail may be impaired.

Early emotional symptoms may be equally subtle. Individuals at this stage may experience more periods of depression, apathy, irritability, or impulsiveness, or perhaps changes in personality.

At this stage, people with Huntington's can function quite well at work and home.

Early Intermediate Stage

The person remains employable but at a lower capacity. They are still able to manage their daily affairs despite some difficulties.

In addition to the physical symptoms of HD, there are often subtle cognitive signs as well.

Intermediate stages

As the disease progresses, the symptoms become worse. The initial motor symptoms will gradually develop into more obvious involuntary movements such as jerking and twitching of the head, neck, arms and legs. These movements may interfere with walking, speaking and swallowing.

People at this stage of Huntington's often look as if they're drunk: they stagger when they walk and their speech is slurred.

They have increasing difficulty working or managing a household, but can still deal with most activities of daily living.

Resources