Table 3. Parents' report of symptoms first noticed and their feelings at that time and while seeking and following the diagnosis.

Description of symptoms reported by more than 20% of parents	Data collected in the survey N=62 (%)	Words and phrases describing how parents felt at various stages, Data collected in survey N=62	When first noticing symptoms n=53 (%)	While seeking diagnosis n=55 (%)	After confirmed diagnosis n=59 (%)
Difficulties with standing	16 (26)	Stressed	18 (34)	33 (60)	45 (76)
		Frustrated	16 (30)	28 (51)	31 (53)
Difficulty with getting up from a seated position	23 (37)	Anxious	24 (45)	39 (71)	39 (66)
		Confused	15 (28)	25 (45)	27 (46)
		Guilty	5 (9)	12 (22)	41 (69)
Poor co-ordination	14 (23)	Sad	10 (19)	23 (42)	56 (95)
Poor balance	23 (37)	In denial	8 (15)	5 (9)	11 (19)
Large calves	26 (42)	Unsure	21 (40)	25 (45)	30 (51)
Complaining of tired legs	16 (26)	Angry with the medical system	10 (19)	13 (24)	19 (32)
		Pressured by health professionals	4 (8)	5 (9)	10 (17)
Difficulties with walking	22 (35)	Pressured by family or friends	7 (13)	7 (13)	16 (27)
Toe-walking	15 (24)	Optimistic about the future	16 (30)	11 (20)	27 (46)
Falling down often	27 (44)	Pessimistic about the future	4 (8)	14 (25)	37 (63)
Clumsy	13 (21)	Worried about my child's development	30 (57)	24 (44)	37 (63)
Tiring easily	23 (37)	Questioning my parenting abilities	14 (26)	11 (20)	19 (32)
Difficulties running	40 (65)	Questioning my own concerns	8 (15)	11 (20)	21 (36)
Difficulties hopping	34 (55)	Concerns dismissed by others	15 (28)	16 (29)	15 (25)
Difficulties climbing stairs	38 (61)	Had a gut instinct something was wrong	37 (70)	26 (47)	10 (17)