Table 2.

Patient-reported symptoms of ataxia: selection of verbatim reports from online survey, question 1 (N = 147 patients)

Concept measured	Patient-reported symptoms of ataxia		Frequency of report [high (H, medium (M), low (L)]
Evaluation of gross motor functions
Gait and walking	Walking; gait Tripping; clumsy walking; stumbling; hard to recover from stumble Slow walking; walking as if drunk Cannot turn or stop quickly Wall walking to keep balance; cannot walk without my walker	Cannot walk and carry anything Cannot climb stairs or go down curbs Loss of leg control Random falls weak legs; once in a while my legs will let go on me Falling every week Falling on uneven ground Unable to walk (wheelchair)	H
Stance and balance (while standing still)	Balance; difficult regaining balance; balance (feeling of falling backward) Cannot stand Coordination Dizziness; dizziness particularly when bending over	My brain feels like it is turning inside my head; vertigo Vestibular dysfunction Loss of leg control Random falls weak legs; once in a while my legs will let go on me	H
Quality of sitting position	Trunk tremors Cannot roll over in bed	Difficulty elevating my body from a sitting position on the floor	L
Evaluation of physical functioning, targeted systems1
Speech	Speech difficulties; poor speech Occasional speech problems; pronunciation of certain words	Slurred speech; slurred and halting speech Slow speech Difficulty with social conversations	H
Swallowing	Swallowing problems Difficult swallowing pills	Esophageal tremor Choking	M
Bladder function	Urinary incontinence	Bladder weakness; lots of bathroom breaks	L
Oculomotor	Headaches; migraines My brain feels like it is turning inside my head; vertigo Vestibular dysfunction	Dizziness; dizziness particularly when bending over Double vision; blurred vision Lack of depth perception	H
Evaluation of upper limb functioning
Finger movement and target accuracy	Sometimes miss what I am trying to grab; lack of depth perception; over-reaching Accidentally poking myself in the eye Double vision; blurred vision	Hand–eye coordination problems; coordination Problems using computer	M
Fine motor accuracy	Hand coordination; manual dexterity; dexterity challenges; worsening finger dexterity and grasping; problems with fine motor; hard to pick things like coins Writing; cannot write clearly	Handshakes; tremors; jerkiness; constant movements Keyboard and typing; poor typing; typing slower Drop and throwing things around unintentionally	H
Hand tremor	Tremors; handshakes Jerkiness; twitching; uncontrollable body movements that make me feel like a puppeteer is in control of my movements (not me)	Constant movements Cannot carry a glass of liquid without spilling Hand coordination Hand/arm clumsiness	HM
Alternating hand movements	Involuntary movements Problems muscle control; sudden loss of muscle control Coordination; hand/arm clumsiness Arm jerk; spasm; twitching	Manual dexterity; dexterity challenges Problems using computer	H
Evaluation of lower limb functioning
Lower limb assessment	Leg tremors; foot tremors (see walking and gait responses)	loss of leg control (see stance and balance responses)	H
Evaluation of activities of daily living (ADLs)
Cutting food and feeding self	Coordination Hand coordination; hand/arm clumsiness Manual dexterity; loss of grip strength; grip difficulties	Fine motor Handshake Jerkiness; twitching	H
Dressing	Coordination Manual dexterity; hard to button small buttons Inability to tie shoes Hard to fasten jewelry Handshake	Hand coordination; hand/arm clumsiness Fine motor Losing grip strength; grip difficulties Jerkiness; twitching	H
Personal hygiene	Worsening dexterity; manual dexterity; fine motor problems; lose grip on small items easily (hairbrush); can no longer twist on caps Balance	Coordination challenges; coordination of hands Poke myself in eye Random falls weak legs; once in a while my legs will let go on me	MH
Falling	Random falls weak legs; once in a while my legs will let go on me Falling every week	Hard to recover from stumble Falling on uneven ground Falling onto furniture	L

Italicized responses reflect reports that may be more tenuously associated with the stated concept, as that the relationship may be less clear. ¹No symptoms reported reflecting challenges with coughing (e.g., producing a strong, controlled cough)