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You are not your Hoehn and Yahr Parkinson's staging score

Picture of Melvin Yahr and Peggy Hoehn that appeared in Movement Disorders.

You would not believe me if I told you how many persons with Parkinson’s have approached me worried after being told their Parkinson’s disease Hoehn and Yahr stage. In this week’s video tip, we address what is the Hoehn and Yahr staging system for Parkinson’s and why it shouldn’t matter.

From 2004 article by the Movement Disorders Society critiquing this scale

  • The HY scale tells you whether Parkinson’s disease is unilateral or bilateral and it tells you if you have impairment in postural reflexes (being able to stabilize yourself so you don’t fall) and whether you use assistive devices.

  • The scale was published in 1967 in the journal Neurology.

  • Stages 1 through 5 were described in the study.

  • Later the scale was modified to include stages 1.5 and 2.5.

  • The idea was to develop a scale to measure disability and impairment due to progression.

  • The Movement Disorder Society Task Force in 2004 critiqued the Hoehn and Yahr scale.

  • The scale was found to mix impairment and disability

  • The scale failed to capture impairments or disability from other motor features beyond walking and balance.

  • There was no information in HY scale on non-motor symptoms.

  • In my opinion I do not believe it is wise for individual persons with PD to apply this scale and assume that it will accurately assess their disease state. You are not your HY scale.

Hoehn MM, Yahr MD. Parkinsonism: onset, progression and mortality. Neurology. 1967 May;17(5):427-42. doi: 10.1212/wnl.17.5.427. PMID: 6067254.

Goetz CG, Poewe W, Rascol O, Sampaio C, Stebbins GT, Counsell C, Giladi N, Holloway RG, Moore CG, Wenning GK, Yahr MD, Seidl L; Movement Disorder Society Task Force on Rating Scales for Parkinson's Disease. Movement Disorder Society Task Force report on the Hoehn and Yahr staging scale: status and recommendations. Mov Disord. 2004 Sep;19(9):1020-8. doi: 10.1002/mds.20213. PMID: 15372591.

Michael Okun