Stages of Disease Progression (Shoulson, 1981) and Alternate Stages of Huntington’s Disease (Pollard & Best, 1996)
Stage I: (0 to 8 years from illness onset)
Maintains only marginal engagement in occupation having part-time voluntary or salaried employment potential, and maintains typical pre-disease level of independence in all other basic functions, such as financial management, domestic responsibilities, and activities of daily living (eating, dressing, bathing, etc.); or performs satisfactorily in typical salaried employment (perhaps at a lower level) and requires slight assistance in only one basic function: finances, domestic chores, or activities of daily living.
Alternate Stage I: Defiance
Stage II: (3 – 13 years from illness onset)
"I am not denying the diagnosis, I’m defying the verdict! I’m refusing to accept it, I’m just boldly resisting the inevitable."
Typically unable to work but requires only slight assistance in all basic functions: finances, domestic, daily activities, or unable to work and requiring major assistance in one basic function with only slight assistance needed in one other basic function; one basic function is handled independently.
Alternate Stage II: Perseverance
"I’m continuing on…in spite of all the difficulties this damn disease puts on me."
Stage III: (5 – 16 years from illness onset)
Totally unable to engage in employment and requires major assistance in most basic functions: financial affairs, domestic responsibilities, and activities of daily living.
Alternate Stage III: Compassion
"I’m sorry for the trouble I’m causing my family and everyone else who cares for me. I wish I could do something to help them."
Stage IV: (9 – 21 years from illness onset)
Requires major assistance in financial affairs, domestic responsibilities, and most activities of daily living. For instance, comprehension of the nature and purpose of procedures may be intact, but major assistance is required to act on them. Care may be provided at home but needs may be better provided for at an extended care facility.
Alternate Stage IV: Stamina
"I’m not sure just what it is but something keeps me going! It keeps me going through all my fatigue and all the problems and hardship this damn disease presents me."
Stage V: (11 – 26 years from illness onset)
Requires major assistance in financial affairs, domestic responsibilities, and all activities of daily living. Full-time skilled nursing care is required.
Alternate Stage V: Grace
"I’ve quietly resigned myself to needing others to care for me, to sustain me. I can’t show them, but I’m more concerned for the welfare of those around me than I am for myself. We know we’re there for each other."