Combined Responses for Questions Asked in Both Survey E and Survey F

Table e-1

Combined Responses for Questions Asked in both Survey E and Survey F

Field / Label / Numberof
Responses / Number
Experiencing / Percent
Experiencing / Mean
Impact Score / Std
Dev / Population Impact Score
Q10A / Limitations with mobility or walking / 74 / 66 / 89.2 / 2.21 / 1.14 / 1.97
Q10B / Hip, thigh, or knee weakness / 74 / 66 / 89.2 / 2.22 / 1.14 / 1.98
Q10C / Back, chest, or abdomen weakness / 73 / 54 / 74.0 / 2.00 / 1.20 / 1.48
Q10D / Problems with shoulders or arms / 73 / 55 / 75.3 / 1.75 / 1.20 / 1.32
Q10E / Problems with hands or fingers / 74 / 57 / 77.0 / 1.52 / 1.25 / 1.17
Q10F / Emotional issues / 73 / 47 / 64.4 / 1.45 / 1.08 / 0.93
Q10G / Changed body image due to disease / 73 / 49 / 67.1 / 1.39 / 1.26 / 0.93
Q10H / Difficulty thinking / 73 / 45 / 61.6 / 1.89 / 1.05 / 1.16
Q10I / Decreased satisfaction in social situations / 73 / 45 / 61.6 / 1.68 / 1.24 / 1.03
Q10J / Decreased performance in social situations / 72 / 47 / 65.3 / 1.68 / 1.29 / 1.10
Q10K / Impaired sleep or daytime sleepiness / 74 / 57 / 77.0 / 2.23 / 1.30 / 1.72
Q10L / Fatigue / 74 / 66 / 89.2 / 2.29 / 1.24 / 2.04
Q10M / Pain / 74 / 59 / 79.7 / 1.98 / 1.41 / 1.58
Q10N / Myotonia / 69 / 57 / 82.6 / 1.65 / 1.11 / 1.36
Q10O / Problems with your vision, hearing or smell / 73 / 54 / 74.0 / 1.96 / 1.15 / 1.45
Q10P / Gastrointestinal issues / 74 / 58 / 78.4 / 1.90 / 1.37 / 1.49
Q10Q / Problems choking or swallowing / 73 / 48 / 65.8 / 1.19 / 0.89 / 0.78
Q10R / Issues having children / 61 / 21 / 34.4 / 2.14 / 1.65 / 0.74
Q10S / Inability to do activities / 72 / 68 / 94.4 / 2.24 / 1.19 / 2.11
Q10T / Communication issues / 72 / 39 / 54.2 / 1.28 / 0.94 / 0.69
Q10U / Difficulty with medication side effects / 73 / 33 / 45.2 / 1.48 / 1.28 / 0.67

Survey E Results

Field / Label / Numberof
Responses / Number
Experiencing / Percent
Experiencing / Mean
Impact Score / Std
Dev / Population Impact Score
Q10A / Limitations with mobility or walking / 38 / 37 / 97.4 / 2.30 / 0.97 / 2.24
Q10B / Hip, thigh, or knee weakness / 38 / 35 / 92.1 / 2.34 / 1.06 / 2.16
Q10C / Back, chest, or abdomen weakness / 37 / 29 / 78.4 / 1.90 / 1.21 / 1.49
Q10D / Problems with shoulders or arms / 38 / 29 / 76.3 / 1.79 / 1.18 / 1.37
Q10E / Problems with hands or fingers / 38 / 34 / 89.5 / 1.53 / 1.26 / 1.37
Q10F / Emotional issues / 37 / 25 / 67.6 / 1.44 / 1.08 / 0.97
Q10G / Changed body image due to disease / 37 / 26 / 70.3 / 1.27 / 1.15 / 0.89
Q10H / Difficulty thinking / 37 / 22 / 59.5 / 2.09 / 0.97 / 1.24
Q10I / Decreased satisfaction in social situations / 37 / 19 / 51.4 / 1.61 / 1.42 / 0.82
Q10J / Decreased performance in social situations / 36 / 21 / 58.3 / 1.76 / 1.51 / 1.03
Q10K / Impaired sleep or daytime sleepiness / 38 / 30 / 78.9 / 2.27 / 1.31 / 1.79
Q10L / Fatigue / 38 / 34 / 89.5 / 2.44 / 1.08 / 2.18
Q10M / Pain / 38 / 32 / 84.2 / 1.97 / 1.43 / 1.66
Q10N / Myotonia / 35 / 30 / 85.7 / 1.77 / 1.07 / 1.51
Q10O / Problems with your vision, hearing or smell / 38 / 28 / 73.7 / 1.96 / 1.00 / 1.45
Q10P / Gastrointestinal issues / 38 / 31 / 81.6 / 1.74 / 1.32 / 1.42
Q10Q / Problems choking or swallowing / 37 / 24 / 64.9 / 1.13 / 0.85 / 0.73
Q10R / Issues having children / 33 / 10 / 30.3 / 2.20 / 1.93 / 0.67
Q10S / Inability to do activities / 37 / 37 / 100.0 / 2.35 / 1.01 / 2.35
Q10T / Communication issues / 37 / 19 / 51.4 / 1.37 / 1.07 / 0.70
Q10U / Difficulty with medication side effects / 37 / 13 / 35.1 / 1.77 / 1.36 / 0.62
Q11A / Diffculty getting up from the floor or ground / 38 / 38 / 100.0 / 2.87 / 1.19 / 2.87
Q11B / Diffculty rising from a seated position / 38 / 37 / 97.4 / 2.27 / 1.10 / 2.21
Q11C / Leg weakness / 38 / 38 / 100.0 / 2.71 / 1.01 / 2.71
Q11D / Difficulty getting up from a lying position / 38 / 35 / 92.1 / 2.23 / 1.14 / 2.05
Q11E / Difficulty squatting down / 38 / 38 / 100.0 / 2.82 / 1.29 / 2.82
Q11F / Difficulty getting off of a toilet / 37 / 32 / 86.5 / 2.13 / 1.36 / 1.84
Q11G / Knee weakness / 37 / 31 / 83.8 / 2.10 / 1.27 / 1.76
Q11H / Difficulty lifting objects because of leg weakness / 38 / 37 / 97.4 / 2.27 / 1.19 / 2.21
Q12A / Impaired walking / 38 / 37 / 97.4 / 1.97 / 1.40 / 1.92
Q12B / Difficulty with stairs / 38 / 37 / 97.4 / 2.88 / 1.20 / 2.80
Q12C / Difficulty with balance / 37 / 36 / 97.3 / 2.11 / 1.33 / 2.05
Q12D / Use of assistant devices for mobility (including wheelchair, etc.) / 37 / 18 / 48.6 / 2.39 / 1.54 / 1.16
Q12E / Falls / 37 / 31 / 83.8 / 2.00 / 1.39 / 1.68
Q12F / Inability to run / 38 / 37 / 97.4 / 2.35 / 1.36 / 2.29
Q12G / Inability to walk fast / 38 / 35 / 92.1 / 2.31 / 1.18 / 2.13
Q12H / Difficulty walking up hills or inclines / 38 / 38 / 100.0 / 2.34 / 1.32 / 2.34
Q12I / Difficulty with rough ground / 36 / 35 / 97.2 / 2.37 / 1.31 / 2.31
Q12J / Problems getting to and using the bathroom / 38 / 23 / 60.5 / 1.96 / 1.36 / 1.18
Q12K / Difficulty walking long distances / 37 / 32 / 86.5 / 2.47 / 1.34 / 2.14
Q12L / Difficulty staying in a standing position / 38 / 31 / 81.6 / 2.16 / 1.24 / 1.76
Q12M / Tripping / 38 / 36 / 94.7 / 2.03 / 1.38 / 1.92
Q12N / Reduced flexibility / 37 / 33 / 89.2 / 2.08 / 1.23 / 1.85
Q12O / Foot drop / 35 / 20 / 57.1 / 1.70 / 1.42 / 0.97
Q12P / Trouble getting around / 36 / 30 / 83.3 / 1.93 / 1.41 / 1.61
Q12Q / Uncertainty of footing / 36 / 32 / 88.9 / 1.81 / 1.49 / 1.61
Q12R / Reliance on stair railings / 38 / 35 / 92.1 / 2.80 / 1.37 / 2.58
Q12S / Not able to go certain places / 38 / 33 / 86.8 / 2.30 / 1.47 / 2.00
Q12T / Difficulty with curbs / 38 / 29 / 76.3 / 2.41 / 1.59 / 1.84
Q12U / Inability to keep pace with friends while walking / 38 / 34 / 89.5 / 2.32 / 1.36 / 2.08
Q13A / Difficulty opening jars or bottles / 38 / 36 / 94.7 / 1.78 / 1.46 / 1.68
Q13B / Hand weakness / 38 / 35 / 92.1 / 1.94 / 1.30 / 1.79
Q13C / Decreased hand grip / 38 / 36 / 94.7 / 1.81 / 1.33 / 1.71
Q13D / Clumsy hands / 38 / 28 / 73.7 / 1.61 / 1.42 / 1.18
Q13E / Difficulty doing things with your hands / 38 / 28 / 73.7 / 1.61 / 1.42 / 1.18
Q13F / Tremors / 38 / 22 / 57.9 / 1.77 / 1.38 / 1.03
Q13G / Problems dropping objects / 38 / 26 / 68.4 / 1.58 / 1.30 / 1.08
Q13H / Impaired ability to open doors or drawers / 38 / 15 / 39.5 / 2.00 / 1.41 / 0.79
Q14A / Slurred speech / 38 / 16 / 42.1 / 1.13 / 1.02 / 0.47
Q14B / Quiet voice / 38 / 8 / 21.1 / 1.25 / 1.28 / 0.26
Q14C / Impaired speech / 38 / 11 / 28.9 / 1.36 / 1.21 / 0.39
Q14D / Difficulty communicating with others / 38 / 15 / 39.5 / 1.33 / 1.05 / 0.53
Q14E / Impaired facial expression / 38 / 12 / 31.6 / 1.42 / 1.08 / 0.45
Q14F / Poor handwriting / 38 / 23 / 60.5 / 1.52 / 1.41 / 0.92
Q14G / Impaired ability to change the inflection of one's voice / 38 / 8 / 21.1 / 1.38 / 1.06 / 0.29
Q14H / Drooping eyelids / 38 / 16 / 42.1 / 1.06 / 1.18 / 0.45
Q14I / Not wanting to talk because of voice / 38 / 4 / 10.5 / 1.25 / 0.96 / 0.13
Q14J / Having to repeat oneself often / 38 / 13 / 34.2 / 1.08 / 0.95 / 0.37
Q14K / Can't raise hands / 38 / 8 / 21.1 / 2.25 / 1.04 / 0.47
Q14L / Inability to smile / 38 / 5 / 13.2 / 1.00 / 1.00 / 0.13
Q14M / Facial weakness / 38 / 15 / 39.5 / 0.93 / 1.10 / 0.37
Q14N / Can not wink / 38 / 4 / 10.5 / 1.00 / 1.15 / 0.11
Q15A / Generalized myotonia / 34 / 26 / 76.5 / 1.85 / 1.29 / 1.41
Q15B / Muscle stiffness / 38 / 33 / 86.8 / 2.15 / 1.23 / 1.87
Q15C / "Locked up" muscles / 38 / 26 / 68.4 / 1.81 / 1.10 / 1.24
Q15D / Jaw stiffness (myotonia) / 38 / 18 / 47.4 / 1.22 / 0.88 / 0.58
Q15E / Cramping / 38 / 25 / 65.8 / 1.68 / 1.22 / 1.11
Q15F / Can't let go of grip / 38 / 21 / 55.3 / 1.38 / 1.40 / 0.76
Q15G / Embarrassment when not able to let go of someone's hand / 38 / 15 / 39.5 / 1.53 / 1.46 / 0.61
Q15H / Knees that "lock up" / 36 / 12 / 33.3 / 1.50 / 0.90 / 0.50
Q15I / Hand myotonia / 36 / 26 / 72.2 / 1.15 / 1.38 / 0.83
Q15J / Tongue cramping / 38 / 9 / 23.7 / 0.89 / 1.17 / 0.21
Q16A / Difficulty sitting up / 38 / 28 / 73.7 / 1.29 / 1.15 / 0.95
Q16B / Difficulty bending down / 38 / 29 / 76.3 / 1.83 / 1.34 / 1.39
Q16C / Neck weakness / 38 / 28 / 73.7 / 1.89 / 1.29 / 1.39
Q16D / Difficulty rolling over in bed / 38 / 26 / 68.4 / 1.85 / 1.29 / 1.26
Q16E / Decreased neck flexibility / 38 / 30 / 78.9 / 1.67 / 1.37 / 1.32
Q16F / Poor posture / 37 / 31 / 83.8 / 1.32 / 1.30 / 1.11
Q16G / Weak trunk (core) muscles / 38 / 34 / 89.5 / 2.06 / 1.30 / 1.84
Q16H / Back weakness / 38 / 32 / 84.2 / 1.91 / 1.44 / 1.61
Q16I / Weak chest muscles / 38 / 28 / 73.7 / 1.21 / 1.32 / 0.89
Q16J / Abdominal muscle weakness / 38 / 30 / 78.9 / 1.43 / 1.25 / 1.13
Q16K / Unable to get out of bed due to weakness / 38 / 18 / 47.4 / 1.39 / 1.38 / 0.66
Q17A / Difficulty cleaning a house / 37 / 30 / 81.1 / 2.00 / 1.23 / 1.62
Q17AA / Difficulty doing yard work / 37 / 31 / 83.8 / 2.39 / 1.36 / 2.00
Q17B / Difficulty getting in and out of vehicles / 37 / 35 / 94.6 / 1.71 / 1.27 / 1.62
Q17BB / Difficulty getting out of a tub or shower / 37 / 27 / 73.0 / 2.26 / 1.32 / 1.65
Q17C / Problems preparing food / 37 / 22 / 59.5 / 1.55 / 1.22 / 0.92
Q17CC / Difficulty changing a light bulb / 37 / 21 / 56.8 / 1.86 / 1.42 / 1.05
Q17D / Problems getting dressed / 37 / 22 / 59.5 / 1.32 / 1.25 / 0.78
Q17DD / Not able to hike / 36 / 29 / 80.6 / 2.50 / 1.58 / 2.01
Q17E / Difficulty maintaining a home / 37 / 25 / 67.6 / 1.96 / 1.31 / 1.32
Q17EE / Difficulty putting on shoes / 37 / 18 / 48.6 / 1.72 / 1.32 / 0.84
Q17F / Difficulty playing sports / 37 / 33 / 89.2 / 2.85 / 1.33 / 2.54
Q17FF / Difficulty cutting or manicuring nails / 37 / 16 / 43.2 / 1.69 / 1.35 / 0.73
Q17G / Impaired sexual function / 37 / 25 / 67.6 / 2.16 / 1.49 / 1.46
Q17GG / Difficulty shoveling / 37 / 31 / 83.8 / 2.03 / 1.68 / 1.70
Q17H / Impaired dancing / 36 / 32 / 88.9 / 2.38 / 1.48 / 2.11
Q17HH / Trouble standing on a chair / 35 / 31 / 88.6 / 2.39 / 1.50 / 2.11
Q17I / Trouble riding a bike / 35 / 30 / 85.7 / 2.50 / 1.53 / 2.14
Q17II / Difficulty taking care of pets / 33 / 12 / 36.4 / 2.25 / 1.48 / 0.82
Q17J / Having to modify a house to accommodate for disability / 36 / 15 / 41.7 / 2.00 / 1.51 / 0.83
Q17JJ / Difficulty making bed / 36 / 21 / 58.3 / 1.76 / 1.45 / 1.03
Q17K / Difficulty driving a motor vehicle / 37 / 12 / 32.4 / 1.33 / 1.61 / 0.43
Q17KK / Difficulty maintaining personal hygiene / 37 / 11 / 29.7 / 1.64 / 1.63 / 0.49
Q17L / Problems shopping / 37 / 24 / 64.9 / 1.67 / 1.43 / 1.08
Q17LL / Difficulty using a computer keyboard / 37 / 11 / 29.7 / 1.73 / 1.42 / 0.51
Q17M / Trouble with going up step ladders / 36 / 31 / 86.1 / 2.52 / 1.52 / 2.17
Q17MM / Impaired safety because of illness / 36 / 19 / 52.8 / 2.05 / 1.35 / 1.08
Q17N / Difficulty bathing or taking a shower / 37 / 20 / 54.1 / 1.90 / 1.37 / 1.03
Q17NN / Difficulty using keys / 37 / 13 / 35.1 / 1.08 / 1.50 / 0.38
Q17O / Difficulty holding a milk gallon / 37 / 25 / 67.6 / 1.36 / 1.32 / 0.92
Q17OO / Difficulty cutting meat / 37 / 18 / 48.6 / 1.33 / 1.41 / 0.65
Q17P / Limited sexual positioning / 34 / 24 / 70.6 / 1.79 / 1.50 / 1.26
Q17PP / Difficulty using a hammer or other tool / 35 / 19 / 54.3 / 1.47 / 1.35 / 0.80
Q17Q / Unable to travel or tour / 37 / 22 / 59.5 / 2.14 / 1.61 / 1.27
Q17QQ / Worsening golf game / 27 / 10 / 37.0 / 2.30 / 1.64 / 0.85
Q17R / Unable to ride a motorcycle / 29 / 16 / 55.2 / 2.44 / 1.82 / 1.34
Q17RR / Difficulty with mopping / 36 / 23 / 63.9 / 1.57 / 1.53 / 1.00
Q17S / Unable to ice skate / 33 / 23 / 69.7 / 2.22 / 1.88 / 1.55
Q17SS / Not able to dust / 37 / 13 / 35.1 / 1.77 / 1.42 / 0.62
Q17T / Impaired ability to exercise / 36 / 32 / 88.9 / 2.16 / 1.32 / 1.92
Q17TT / Problems washing windows / 36 / 19 / 52.8 / 2.16 / 1.42 / 1.14
Q17U / Problems using buttons or zippers / 37 / 19 / 51.4 / 1.37 / 1.01 / 0.70
Q17UU / Difficulty lifting weights / 36 / 31 / 86.1 / 2.10 / 1.45 / 1.81
Q17W / Taking longer to do household chores / 36 / 27 / 75.0 / 1.74 / 1.32 / 1.31
Q17WW / Difficutly vacuuming / 37 / 23 / 62.2 / 1.61 / 1.41 / 1.00
Q17X / Difficulty washing dishes / 37 / 16 / 43.2 / 1.63 / 1.41 / 0.70
Q17XX / Difficulty painting / 35 / 23 / 65.7 / 1.74 / 1.36 / 1.14
Q17Y / Difficulty scrubbing surfaces / 37 / 24 / 64.9 / 1.79 / 1.38 / 1.16
Q17YY / Unable to turn on a light with a pull cord / 37 / 3 / 8.1 / 3.00 / 0.00 / 0.24
Q17Z / Difficulty swimming / 34 / 20 / 58.8 / 1.60 / 1.57 / 0.94
Q17ZZ / Difficulty tying shoes / 37 / 9 / 24.3 / 1.78 / 1.72 / 0.43
Q18A / Diffuse pain / 35 / 23 / 65.7 / 1.91 / 1.62 / 1.26
Q18B / Chest pain / 37 / 16 / 43.2 / 1.00 / 0.97 / 0.43
Q18C / Leg pain / 38 / 29 / 76.3 / 2.14 / 1.30 / 1.63
Q18D / Hip pain / 38 / 27 / 71.1 / 1.78 / 1.34 / 1.26
Q18E / Neck pain / 38 / 27 / 71.1 / 1.78 / 1.28 / 1.26
Q18F / Sore or achy muscles / 38 / 31 / 81.6 / 2.26 / 1.24 / 1.84
Q18G / Back pain / 38 / 31 / 81.6 / 1.97 / 1.43 / 1.61
Q18H / Limited activity from pain / 37 / 24 / 64.9 / 2.13 / 1.48 / 1.38
Q18I / Foot pain / 38 / 19 / 50.0 / 2.16 / 1.26 / 1.08
Q18J / Pain during sex / 36 / 12 / 33.3 / 1.92 / 1.56 / 0.64
Q18K / Arm pain / 38 / 16 / 42.1 / 2.19 / 1.56 / 0.92
Q18L / Shoulder pain / 37 / 17 / 45.9 / 2.18 / 1.51 / 1.00
Q18M / Muscle pain after exertion / 38 / 32 / 84.2 / 2.03 / 1.28 / 1.71
Q19A / Arm weakness / 38 / 33 / 86.8 / 1.67 / 1.31 / 1.45
Q19B / Difficulty lifting objects / 38 / 36 / 94.7 / 1.97 / 1.23 / 1.87
Q19C / Shoulder weakness / 38 / 27 / 71.1 / 1.96 / 1.29 / 1.39
Q19D / Difficulty reaching items on the back of a shelf or fridge / 38 / 25 / 65.8 / 1.52 / 1.36 / 1.00
Q19E / Difficulty lifting children / 36 / 30 / 83.3 / 2.47 / 1.41 / 2.06
Q19F / Difficulty brushing or washing hair / 38 / 16 / 42.1 / 1.75 / 1.48 / 0.74
Q19G / Difficulty carrying a load / 38 / 36 / 94.7 / 2.25 / 1.25 / 2.13
Q19H / Difficulty lifting laundry basket / 38 / 29 / 76.3 / 2.17 / 1.51 / 1.66
Q19I / Difficulty reaching things overhead / 37 / 27 / 73.0 / 2.00 / 1.52 / 1.46
Q19J / Reduced arm and shoulder range of motion / 38 / 22 / 57.9 / 1.91 / 1.60 / 1.11
Q19K / Difficulty putting away dishes overhead / 37 / 26 / 70.3 / 1.69 / 1.59 / 1.19
Q19L / Difficulty brushing teeth / 38 / 9 / 23.7 / 1.56 / 1.51 / 0.37

Survey F Results

Field / Label / Numberof
Responses / Number
Experiencing / Percent
Experiencing / Mean
Impact Score / Std
Dev / Population Impact Score
Q10A / Limitations with mobility or walking / 36 / 29 / 80.6 / 2.10 / 1.35 / 1.69
Q10B / Hip, thigh, or knee weakness / 36 / 31 / 86.1 / 2.08 / 1.24 / 1.79
Q10C / Back, chest, or abdomen weakness / 36 / 25 / 69.4 / 2.12 / 1.20 / 1.47
Q10D / Problems with shoulders or arms / 35 / 26 / 74.3 / 1.71 / 1.25 / 1.27
Q10E / Problems with hands or fingers / 36 / 23 / 63.9 / 1.50 / 1.25 / 0.96
Q10F / Emotional issues / 36 / 22 / 61.1 / 1.45 / 1.10 / 0.89
Q10G / Changed body image due to disease / 36 / 23 / 63.9 / 1.52 / 1.38 / 0.97
Q10H / Difficulty thinking / 36 / 23 / 63.9 / 1.70 / 1.11 / 1.08
Q10I / Decreased satisfaction in social situations / 36 / 26 / 72.2 / 1.73 / 1.12 / 1.25
Q10J / Decreased performance in social situations / 36 / 26 / 72.2 / 1.62 / 1.10 / 1.17
Q10K / Impaired sleep or daytime sleepiness / 36 / 27 / 75.0 / 2.19 / 1.30 / 1.64
Q10L / Fatigue / 36 / 32 / 88.9 / 2.13 / 1.39 / 1.89
Q10M / Pain / 36 / 27 / 75.0 / 2.00 / 1.41 / 1.50
Q10N / Myotonia / 34 / 27 / 79.4 / 1.52 / 1.16 / 1.21
Q10O / Problems with your vision, hearing or smell / 35 / 26 / 74.3 / 1.96 / 1.31 / 1.46
Q10P / Gastrointestinal issues / 36 / 27 / 75.0 / 2.07 / 1.44 / 1.56
Q10Q / Problems choking or swallowing / 36 / 24 / 66.7 / 1.25 / 0.94 / 0.83
Q10R / Issues having children / 28 / 11 / 39.3 / 2.09 / 1.45 / 0.82
Q10S / Inability to do activities / 35 / 31 / 88.6 / 2.10 / 1.37 / 1.86
Q10T / Communication issues / 35 / 20 / 57.1 / 1.20 / 0.83 / 0.69
Q10U / Difficulty with medication side effects / 36 / 20 / 55.6 / 1.30 / 1.22 / 0.72
Q11A / Memory deficits / 36 / 27 / 75.0 / 1.63 / 1.15 / 1.22
Q11B / Problems concentrating / 36 / 26 / 72.2 / 1.69 / 1.01 / 1.22
Q11C / Trouble finding the right word / 36 / 29 / 80.6 / 1.62 / 1.29 / 1.31
Q11D / Requirement for increased planning / 35 / 25 / 71.4 / 1.64 / 1.19 / 1.17
Q11E / Decreased motivation / 35 / 26 / 74.3 / 1.88 / 1.24 / 1.40
Q11F / Cognitive fatigue / 35 / 22 / 62.9 / 2.27 / 1.08 / 1.43
Q11G / Decreased ability to think fast / 36 / 27 / 75.0 / 1.93 / 1.30 / 1.44
Q11H / Difficulty with math / 36 / 20 / 55.6 / 1.35 / 1.31 / 0.75
Q11I / Problems reading / 36 / 22 / 61.1 / 1.18 / 0.96 / 0.72
Q11J / Being in a dream like state / 35 / 21 / 60.0 / 0.95 / 1.07 / 0.57
Q11K / Disorganization / 36 / 24 / 66.7 / 1.19 / 1.05 / 0.79
Q11L / Difficulty with comprehension / 36 / 22 / 61.1 / 1.27 / 1.24 / 0.78
Q11M / Reduced decision making abilities / 36 / 22 / 61.1 / 1.55 / 1.14 / 0.94
Q11N / Not able to focus / 36 / 25 / 69.4 / 1.32 / 0.95 / 0.92
Q11O / Confusion / 35 / 21 / 60.0 / 1.00 / 1.26 / 0.60
Q11P / Inability to keep appointments / 36 / 15 / 41.7 / 0.53 / 0.83 / 0.22
Q11Q / Learning difficulties / 35 / 19 / 54.3 / 1.37 / 1.07 / 0.74
Q11R / Visual spatial difficulties / 34 / 12 / 35.3 / 1.17 / 1.03 / 0.41
Q12A / Physical fatigue / 36 / 33 / 91.7 / 2.15 / 1.44 / 1.97
Q12B / Impaired endurance / 36 / 33 / 91.7 / 2.48 / 1.30 / 2.28
Q12C / Whole body weakness / 36 / 30 / 83.3 / 2.37 / 1.30 / 1.97
Q12D / Decreased energy / 35 / 32 / 91.4 / 2.19 / 1.38 / 2.00
Q12E / Prolonged recovery time after activities / 36 / 32 / 88.9 / 2.17 / 1.37 / 1.93
Q12F / Muscle fatigue / 35 / 31 / 88.6 / 2.10 / 1.30 / 1.86
Q12G / Lethargy / 36 / 27 / 75.0 / 1.93 / 1.49 / 1.44
Q12H / Decreased lower extremity stamina / 36 / 31 / 86.1 / 2.47 / 1.20 / 2.13
Q12I / Decreased activity level / 35 / 32 / 91.4 / 2.19 / 1.40 / 2.00
Q12J / Breathing difficulties / 35 / 18 / 51.4 / 1.11 / 1.23 / 0.57
Q12K / Tired muscles / 36 / 34 / 94.4 / 2.06 / 1.32 / 1.94
Q13A / Problems swallowing / 36 / 23 / 63.9 / 0.83 / 0.89 / 0.53
Q13B / Choking / 36 / 18 / 50.0 / 0.78 / 0.88 / 0.39
Q13C / Modification of diet due to choking / 36 / 8 / 22.2 / 1.25 / 1.49 / 0.28
Q13D / Fear of choking / 36 / 11 / 30.6 / 0.82 / 1.25 / 0.25
Q14A / Depression / 36 / 22 / 61.1 / 1.68 / 1.49 / 1.03
Q14AA / Self pity / 35 / 9 / 25.7 / 0.56 / 1.13 / 0.14
Q14B / Awareness of the disease getting worse / 35 / 30 / 85.7 / 1.73 / 1.44 / 1.49
Q14BB / Constant need to adapt to disability / 36 / 19 / 52.8 / 1.47 / 1.35 / 0.78
Q14C / Burden of thinking about the future / 36 / 23 / 63.9 / 1.65 / 1.50 / 1.06
Q14CC / Symptoms mistaken as another disease by others / 36 / 15 / 41.7 / 1.13 / 1.13 / 0.47
Q14D / Anxiety / 35 / 19 / 54.3 / 1.74 / 1.24 / 0.94
Q14DD / Difficulty letting people get close emotionally / 36 / 10 / 27.8 / 1.10 / 1.20 / 0.31
Q14E / Damaged pride with loss of independence / 36 / 20 / 55.6 / 1.55 / 1.43 / 0.86
Q14EE / Increased emotional sensitivity / 36 / 18 / 50.0 / 1.56 / 1.25 / 0.78
Q14F / Fear of falling / 36 / 27 / 75.0 / 1.96 / 1.51 / 1.47
Q14FF / Concern about heart problems / 36 / 24 / 66.7 / 1.50 / 1.35 / 1.00
Q14G / Moodiness / 35 / 19 / 54.3 / 1.26 / 1.19 / 0.69
Q14GG / Concern that your work will find out that you have an illness / 33 / 4 / 12.1 / 1.00 / 1.41 / 0.12
Q14H / Panic / 36 / 16 / 44.4 / 0.63 / 1.09 / 0.28
Q14HH / Changed perspective on how to live life / 36 / 23 / 63.9 / 1.70 / 1.26 / 1.08
Q14I / Frustration / 36 / 28 / 77.8 / 1.57 / 1.29 / 1.22
Q14II / Shyness / 36 / 15 / 41.7 / 1.40 / 1.12 / 0.58
Q14J / Embarrassment of disability / 35 / 15 / 42.9 / 1.13 / 1.19 / 0.49
Q14JJ / Hopelessness / 36 / 9 / 25.0 / 1.22 / 1.09 / 0.31
Q14K / Feeling of being overwhelmed / 35 / 21 / 60.0 / 1.71 / 1.19 / 1.03
Q14KK / Grumpy/argumentative nature / 36 / 14 / 38.9 / 1.14 / 0.95 / 0.44
Q14L / Increased stress / 36 / 26 / 72.2 / 1.62 / 1.33 / 1.17
Q14LL / Fear of a worsening ability to think / 36 / 22 / 61.1 / 1.27 / 1.28 / 0.78
Q14M / Decreased tolerance of others / 36 / 22 / 61.1 / 1.41 / 1.26 / 0.86
Q14MM / Fear of death / 34 / 9 / 26.5 / 0.67 / 1.12 / 0.18
Q14N / Generalized fear / 36 / 16 / 44.4 / 0.88 / 0.96 / 0.39
Q14NN / Feeling of losing control / 36 / 19 / 52.8 / 1.37 / 1.21 / 0.72
Q14O / Fear of injury with activity / 36 / 20 / 55.6 / 1.75 / 1.16 / 0.97
Q14P / Obession about the disease / 35 / 7 / 20.0 / 1.00 / 1.41 / 0.20
Q14Q / Grief / 36 / 14 / 38.9 / 0.79 / 0.97 / 0.31
Q14R / Keeping more to oneself (introverted) / 36 / 18 / 50.0 / 0.94 / 1.21 / 0.47
Q14S / Denial / 35 / 4 / 11.4 / 1.25 / 0.96 / 0.14
Q14T / Apathy / 36 / 12 / 33.3 / 1.42 / 1.00 / 0.47
Q14U / Decreased confidence / 36 / 19 / 52.8 / 1.63 / 1.26 / 0.86
Q14W / Anger / 36 / 16 / 44.4 / 1.31 / 1.08 / 0.58
Q14X / Loss of pride / 36 / 13 / 36.1 / 1.38 / 1.33 / 0.50
Q14Y / Sadness / 36 / 17 / 47.2 / 1.06 / 1.14 / 0.50
Q14Z / Isolation / 36 / 13 / 36.1 / 1.31 / 1.18 / 0.47
Q15A / Impaired self image / 36 / 21 / 58.3 / 1.14 / 1.35 / 0.67
Q15B / Skin abnormalities / 36 / 15 / 41.7 / 1.47 / 1.46 / 0.61
Q15C / Impaired body image / 36 / 20 / 55.6 / 1.30 / 1.17 / 0.72
Q15D / Worry about how others perceive you / 35 / 17 / 48.6 / 1.06 / 1.14 / 0.51
Q15E / Decreased muscle definition / 36 / 28 / 77.8 / 1.46 / 1.14 / 1.14
Q15F / Self conscious of muscle loss / 36 / 25 / 69.4 / 1.32 / 1.22 / 0.92
Q15G / Hair loss / 36 / 11 / 30.6 / 1.27 / 1.49 / 0.39
Q15H / Embarrassment in wearing a bathing suit / 36 / 23 / 63.9 / 1.83 / 1.56 / 1.17
Q15I / Impaired body image due to abdomen protrusion / 35 / 18 / 51.4 / 2.17 / 1.50 / 1.11
Q15J / Impaired body image due to gait / 36 / 16 / 44.4 / 1.50 / 1.41 / 0.67
Q16A / Cataracts / 36 / 20 / 55.6 / 1.50 / 1.43 / 0.83
Q16B / Hearing difficulties / 36 / 24 / 66.7 / 1.92 / 1.38 / 1.28
Q16C / Dizziness / 36 / 22 / 61.1 / 1.00 / 0.87 / 0.61
Q16D / Impaired ability to read / 35 / 20 / 57.1 / 1.20 / 1.15 / 0.69
Q16E / Ringing in the ears / 35 / 20 / 57.1 / 1.45 / 1.19 / 0.83
Q16F / Difficulty with visual focus / 34 / 20 / 58.8 / 1.10 / 1.25 / 0.65
Q16G / Visual loss / 33 / 16 / 48.5 / 1.31 / 1.25 / 0.64
Q16H / Impaired smell / 35 / 12 / 34.3 / 1.17 / 1.64 / 0.40
Q16I / Poor night vision / 34 / 24 / 70.6 / 1.63 / 1.38 / 1.15
Q16J / Increased tearing / 36 / 12 / 33.3 / 1.00 / 0.85 / 0.33
Q16K / Not able to close eyes / 36 / 3 / 8.3 / 0.83 / 0.76 / 0.07
Q16L / Eye irritation / 36 / 16 / 44.4 / 0.75 / 0.93 / 0.33
Q17A / Inability to do things that you used to do / 36 / 32 / 88.9 / 2.38 / 1.18 / 2.11
Q17B / Lack of ability to participate in fun activities / 36 / 30 / 83.3 / 2.10 / 1.45 / 1.75
Q17C / Perceived burden to family members / 35 / 21 / 60.0 / 1.95 / 1.24 / 1.17
Q17D / Lack of understanding by family, friends, or co-workers / 36 / 12 / 33.3 / 1.25 / 1.42 / 0.42
Q17E / Increased family stress / 35 / 16 / 45.7 / 1.44 / 1.03 / 0.66
Q17F / Lowered self worth / 36 / 22 / 61.1 / 1.14 / 1.13 / 0.69
Q17G / Lack of available information about your disease / 35 / 19 / 54.3 / 1.53 / 1.65 / 0.83
Q17H / Perception of being lazy / 36 / 17 / 47.2 / 1.71 / 1.36 / 0.81
Q17I / Dissatisfaction with social interactions / 36 / 24 / 66.7 / 1.13 / 1.12 / 0.75
Q17J / Impaired interactions with friends (satisfaction) / 36 / 20 / 55.6 / 1.20 / 1.01 / 0.67
Q17K / Dissatisfaction with social interactions / 36 / 22 / 61.1 / 1.27 / 1.03 / 0.78
Q17L / Decreased sexual contacts / 34 / 20 / 58.8 / 1.85 / 1.50 / 1.09
Q17M / Being perceived by others as dumb or dull / 34 / 12 / 35.3 / 1.17 / 0.94 / 0.41
Q17N / Discrimination at work / 31 / 1 / 3.2 / 0.00 / . / 0.00
Q17O / The perception by others that myotonic dystrophy is contagious / 36 / 3 / 8.3 / 0.33 / 0.58 / 0.03
Q17P / Loss of physical intimacy / 34 / 17 / 50.0 / 1.94 / 1.43 / 0.97
Q17Q / Decreased acceptance by others / 36 / 8 / 22.2 / 1.50 / 1.07 / 0.33
Q17R / Need to hide one's condition from friends / 36 / 9 / 25.0 / 1.17 / 0.87 / 0.29
Q17S / Feeling older than age / 35 / 17 / 48.6 / 1.71 / 1.16 / 0.83
Q17T / Reduced enjoyment with activities / 36 / 25 / 69.4 / 2.24 / 1.23 / 1.56
Q18A / Decision not to have children as to not pass on the disease / 31 / 5 / 16.1 / 2.00 / 1.58 / 0.32
Q18B / Anger towards a parent who gave the disease / 36 / 0 / 0 / 0 / 0 / 0
Q18C / Difficulty having children / 31 / 8 / 25.8 / 1.63 / 1.30 / 0.42
Q18D / The need for reproductive intervention to have unaffected children / 28 / 4 / 14.3 / 1.75 / 1.71 / 0.25
Q18E / Fear to tell children that they may have the disease / 30 / 4 / 13.3 / 1.75 / 0.96 / 0.23
Q18F / Guilt of passing the disease on to others / 31 / 9 / 29.0 / 2.44 / 1.59 / 0.71
Q19A / Daytime somnolence / 32 / 23 / 71.9 / 1.52 / 1.38 / 1.09
Q19B / Excessive sleep requirements / 36 / 26 / 72.2 / 1.79 / 1.42 / 1.29
Q19C / Breathing problems at night / 35 / 13 / 37.1 / 0.85 / 0.90 / 0.31
Q19D / Difficulty sleeping due to choking on saliva / 36 / 5 / 13.9 / 0.40 / 0.55 / 0.06
Q19E / Difficulty falling asleep at night / 36 / 23 / 63.9 / 1.87 / 1.42 / 1.19
Q19F / Fear of safety secondary to excessive sleepiness / 36 / 7 / 19.4 / 1.86 / 1.21 / 0.36
Q19G / Restless sleep / 36 / 25 / 69.4 / 1.32 / 1.41 / 0.92
Q20A / The reliance on family members / 36 / 21 / 58.3 / 1.69 / 1.17 / 0.99
Q20AA / Unable to babysit due to disability / 33 / 11 / 33.3 / 1.91 / 1.45 / 0.64
Q20B / Limitations physically on what one can do / 36 / 30 / 83.3 / 2.23 / 1.43 / 1.86
Q20C / Issues at work / 29 / 10 / 34.5 / 1.40 / 1.43 / 0.48
Q20D / Having to adapt to disease related restrictions / 36 / 27 / 75.0 / 1.85 / 1.35 / 1.39
Q20E / Lack of job secondary to disability / 31 / 8 / 25.8 / 3.00 / 1.20 / 0.77
Q20F / Decreased independence / 36 / 24 / 66.7 / 1.83 / 1.46 / 1.22
Q20G / Impaired social interactions / 36 / 22 / 61.1 / 1.45 / 0.96 / 0.89
Q20H / Difficulty interacting with family / 36 / 11 / 30.6 / 1.55 / 1.04 / 0.47
Q20I / Limited activities secondary to weakness / 36 / 27 / 75.0 / 1.93 / 1.59 / 1.44
Q20J / Difficulty interacting with friends / 36 / 15 / 41.7 / 1.27 / 1.10 / 0.53
Q20K / The avoidance of social situations / 36 / 20 / 55.6 / 1.35 / 0.93 / 0.75
Q20L / Reliance on co-workers / 32 / 7 / 21.9 / 0.71 / 0.76 / 0.16
Q20M / Disease affecting choice of where to live / 34 / 17 / 50.0 / 1.94 / 1.56 / 0.97
Q20N / Increased time to complete an activity / 36 / 25 / 69.4 / 1.60 / 1.32 / 1.11
Q20O / Financial issues associated with your disability / 36 / 18 / 50.0 / 2.56 / 1.42 / 1.28
Q20P / Unable to enjoy an active lifestyle / 36 / 27 / 75.0 / 2.52 / 1.42 / 1.89
Q20Q / Difficulty making friends / 36 / 14 / 38.9 / 1.21 / 1.05 / 0.47
Q20R / Inability to care for family members / 35 / 14 / 40.0 / 2.29 / 1.14 / 0.91
Q20S / Lack of perfection at job / 32 / 9 / 28.1 / 1.22 / 1.48 / 0.34
Q20T / Change from a leader to a follower / 34 / 11 / 32.4 / 1.00 / 0.89 / 0.32
Q20U / Inability to "go out" / 35 / 14 / 40.0 / 1.86 / 1.23 / 0.74
Q20W / The inability to hold health or long-term insurance / 35 / 8 / 22.9 / 1.88 / 1.73 / 0.43
Q20X / Reliance on friends / 35 / 13 / 37.1 / 1.23 / 1.09 / 0.46
Q20Y / Marijuana or other drug use / 35 / 2 / 5.7 / 1.00 / 1.41 / 0.06
Q20Z / Excessive alcohol use / 35 / 3 / 8.6 / 1.00 / 0.00 / 0.09
Q21A / Constipation / 35 / 24 / 68.6 / 2.08 / 1.53 / 1.43
Q21B / Abdominal pain / 36 / 24 / 66.7 / 1.00 / 1.02 / 0.67
Q21C / Diarrhea / 36 / 10 / 27.8 / 1.80 / 1.14 / 0.50
Q21D / A change in diet due to intestinal distress / 36 / 16 / 44.4 / 1.31 / 1.14 / 0.58
Q21E / Indigestion / 36 / 16 / 44.4 / 1.50 / 1.41 / 0.67
Q21F / Stomach cramping / 35 / 13 / 37.1 / 1.54 / 1.27 / 0.57
Q21G / Gas / 35 / 24 / 68.6 / 1.46 / 1.38 / 1.00
Q21H / Bloating / 35 / 21 / 60.0 / 1.57 / 1.47 / 0.94
Q21I / Fecal incontinence / 35 / 8 / 22.9 / 2.00 / 1.07 / 0.46
Q21J / Change in your activities secondary to gastrointestinal symptoms / 36 / 15 / 41.7 / 1.00 / 1.31 / 0.42

Data Displayed As Individual Participant Responses For Each Individual Question.

Participant responses marked in between boxes are listed with the response option of the left.

TableofItembyResponse
Item / Response
Frequency / No response / Don't experience / Exp, does not affect life / Exp, affects life a little / Exp, affects life moderately / Exp, affects life very much / Exp, affects life severely / Total
Q10A: Limitations with mobility or walking / 0 / 8 / 5 / 14 / 17 / 22 / 8 / 74
Q10B: Hip, thigh, or knee weakness / 0 / 8 / 5 / 14 / 17 / 22 / 8 / 74
Q10C: Back, chest, or abdomen weakness / 1 / 19 / 6 / 15 / 11 / 17 / 5 / 74
Q10D: Problems with shoulders or arms / 1 / 18 / 10 / 15 / 12 / 15 / 3 / 74
Q10E: Problems with hands or fingers / 0 / 17 / 17 / 11 / 15 / 11 / 3 / 74
Q10F: Emotional issues / 1 / 26 / 12 / 11 / 15 / 9 / 0 / 74
Q10G: Changed body image due to disease / 1 / 24 / 16 / 12 / 9 / 10 / 2 / 74
Q10H: Difficulty thinking / 1 / 28 / 4 / 12 / 17 / 9 / 3 / 74
Q10I: Decreased satisfaction in social situations / 1 / 28 / 8 / 14 / 13 / 5 / 5 / 74
Q10J: Decreased performance in social situations / 2 / 25 / 10 / 12 / 14 / 5 / 6 / 74
Q10K: Impaired sleep or daytime sleepiness / 0 / 17 / 7 / 11 / 11 / 18 / 10 / 74
Q10L: Fatigue / 0 / 8 / 5 / 14 / 18 / 15 / 14 / 74
Q10M: Pain / 0 / 15 / 12 / 11 / 13 / 12 / 11 / 74
Q10N: Myotonia / 5 / 12 / 8 / 21 / 14 / 11 / 3 / 74
Q10O: Problems with your vision, hearing or smell / 1 / 19 / 8 / 7 / 23 / 11 / 5 / 74
Q10P: Gastrointestinal issues / 0 / 16 / 12 / 11 / 16 / 9 / 10 / 74
Q10Q: Problems choking or swallowing / 1 / 25 / 11 / 20 / 15 / 1 / 1 / 74
Q10R: Issues having children / 13 / 40 / 5 / 4 / 2 / 3 / 7 / 74
Q10S: Inability to do activities / 2 / 4 / 5 / 15 / 18 / 19 / 11 / 74
Q10T: Communication issues / 2 / 33 / 8 / 17 / 9 / 5 / 0 / 74
Q10U: Difficulty with medication side effects / 1 / 40 / 9 / 10 / 5 / 7 / 2 / 74
Total / 33 / 430 / 183 / 271 / 284 / 236 / 117 / 1554

Survey E

TableofItembyResponse
Item / Response
Frequency / No response / Don't experience / Exp, does not affect life / Exp, affects life a little / Exp, affects life moderately / Exp, affects life very much / Exp, affects life severely / Total
Q11A: Diffculty getting up from the floor or ground / 0 / 0 / 2 / 4 / 5 / 13 / 14 / 38
Q11B: Diffculty rising from a seated position / 0 / 1 / 2 / 6 / 15 / 8 / 6 / 38
Q11C: Leg weakness / 0 / 0 / 1 / 3 / 11 / 14 / 9 / 38
Q11D: Difficulty getting up from a lying position / 0 / 3 / 1 / 9 / 13 / 5 / 7 / 38
Q11E: Difficulty squatting down / 0 / 0 / 2 / 7 / 2 / 12 / 15 / 38
Q11F: Difficulty getting off of a toilet / 1 / 5 / 5 / 6 / 7 / 8 / 6 / 38
Q11G: Knee weakness / 1 / 6 / 2 / 11 / 6 / 6 / 6 / 38
Q11H: Difficulty lifting objects because of leg weakness / 0 / 1 / 4 / 4 / 13 / 10 / 6 / 38
Q12A: Impaired walking / 0 / 1 / 6 / 11 / 5 / 8 / 7 / 38
Q12B: Difficulty with stairs / 0 / 1 / 2 / 3 / 8 / 9 / 15 / 38
Q12C: Difficulty with balance / 1 / 1 / 4 / 9 / 10 / 5 / 8 / 38
Q12D: Use of assistant devices for mobility (including wheelchair, etc.) / 1 / 19 / 3 / 3 / 2 / 4 / 6 / 38
Q12E: Falls / 1 / 6 / 4 / 10 / 6 / 4 / 7 / 38
Q12F: Inability to run / 0 / 1 / 5 / 5 / 8 / 10 / 9 / 38
Q12G: Inability to walk fast / 0 / 3 / 1 / 9 / 11 / 6 / 8 / 38
Q12H: Difficulty walking up hills or inclines / 0 / 0 / 5 / 3 / 14 / 6 / 10 / 38
Q12I: Difficulty with rough ground / 2 / 1 / 4 / 4 / 11 / 7 / 9 / 38
Q12J: Problems getting to and using the bathroom / 0 / 15 / 3 / 7 / 6 / 2 / 5 / 38
Q12K: Difficulty walking long distances / 1 / 5 / 2 / 7 / 8 / 4 / 11 / 38
Q12L: Difficulty staying in a standing position / 0 / 7 / 4 / 4 / 11 / 7 / 5 / 38
Q12M: Tripping / 0 / 2 / 7 / 5 / 11 / 6 / 7 / 38
Q12N: Reduced flexibility / 1 / 4 / 4 / 7 / 9 / 9 / 4 / 38
Q12O: Foot drop / 3 / 15 / 5 / 5 / 4 / 3 / 3 / 38
Q12P: Trouble getting around / 2 / 6 / 5 / 9 / 5 / 5 / 6 / 38
Q12Q: Uncertainty of footing / 2 / 4 / 8 / 8 / 4 / 6 / 6 / 38
Q12R: Reliance on stair railings / 0 / 3 / 4 / 2 / 6 / 8 / 15 / 38
Q12S: Not able to go certain places / 0 / 5 / 5 / 5 / 9 / 3 / 11 / 38
Q12T: Difficulty with curbs / 0 / 9 / 4 / 8 / 1 / 4 / 12 / 38
Q12U: Inability to keep pace with friends while walking / 0 / 4 / 3 / 8 / 8 / 5 / 10 / 38
Q13A: Difficulty opening jars or bottles / 0 / 2 / 9 / 8 / 8 / 4 / 7 / 38
Q13B: Hand weakness / 0 / 3 / 6 / 7 / 10 / 7 / 5 / 38
Q13C: Decreased hand grip / 0 / 2 / 7 / 9 / 9 / 6 / 5 / 38
Q13D: Clumsy hands / 0 / 10 / 8 / 7 / 5 / 4 / 4 / 38
Q13E: Difficulty doing things with your hands / 0 / 10 / 9 / 5 / 5 / 6 / 3 / 38
Q13F: Tremors / 0 / 16 / 6 / 3 / 5 / 6 / 2 / 38
Q13G: Problems dropping objects / 0 / 12 / 5 / 10 / 6 / 1 / 4 / 38
Q13H: Impaired ability to open doors or drawers / 0 / 23 / 3 / 2 / 5 / 2 / 3 / 38
Q14A: Slurred speech / 0 / 22 / 5 / 6 / 3 / 2 / 0 / 38
Q14B: Quiet voice / 0 / 30 / 3 / 2 / 1 / 2 / 0 / 38
Q14C: Impaired speech / 0 / 27 / 3 / 3 / 4 / 0 / 1 / 38
Q14D: Difficulty communicating with others / 0 / 23 / 3 / 6 / 5 / 0 / 1 / 38
Q14E: Impaired facial expression / 0 / 26 / 2 / 5 / 4 / 0 / 1 / 38
Q14F: Poor handwriting / 0 / 15 / 8 / 5 / 1 / 8 / 1 / 38
Q14G: Impaired ability to change the inflection of one's voice / 0 / 30 / 2 / 2 / 3 / 1 / 0 / 38
Q14H: Drooping eyelids / 0 / 22 / 7 / 4 / 2 / 3 / 0 / 38
Q14I: Not wanting to talk because of voice / 0 / 34 / 1 / 1 / 2 / 0 / 0 / 38
Q14J: Having to repeat oneself often / 0 / 25 / 4 / 5 / 3 / 1 / 0 / 38
Q14K: Can't raise hands / 0 / 30 / 0 / 2 / 3 / 2 / 1 / 38
Q14L: Inability to smile / 0 / 33 / 2 / 1 / 2 / 0 / 0 / 38
Q14M: Facial weakness / 0 / 23 / 8 / 1 / 5 / 1 / 0 / 38
Q14N: Can not wink / 0 / 34 / 2 / 0 / 2 / 0 / 0 / 38
Q15A: Generalized myotonia / 4 / 8 / 5 / 6 / 5 / 8 / 2 / 38
Q15B: Muscle stiffness / 0 / 5 / 4 / 5 / 11 / 8 / 5 / 38
Q15C: "Locked up" muscles / 0 / 12 / 3 / 8 / 7 / 7 / 1 / 38
Q15D: Jaw stiffness (myotonia) / 0 / 20 / 3 / 10 / 3 / 2 / 0 / 38
Q15E: Cramping / 0 / 13 / 5 / 7 / 5 / 7 / 1 / 38
Q15F: Can't let go of grip / 0 / 17 / 8 / 3 / 7 / 0 / 3 / 38
Q15G: Embarrassment when not able to let go of someone's hand / 0 / 23 / 5 / 3 / 3 / 2 / 2 / 38
Q15H: Knees that "lock up" / 2 / 24 / 2 / 3 / 6 / 1 / 0 / 38
Q15I: Hand myotonia / 2 / 10 / 12 / 6 / 2 / 4 / 2 / 38
Q15J: Tongue cramping / 0 / 29 / 5 / 1 / 2 / 1 / 0 / 38
Q16A: Difficulty sitting up / 0 / 10 / 8 / 9 / 8 / 1 / 2 / 38
Q16B: Difficulty bending down / 0 / 9 / 5 / 8 / 8 / 3 / 5 / 38
Q16C: Neck weakness / 0 / 10 / 4 / 9 / 4 / 8 / 3 / 38
Q16D: Difficulty rolling over in bed / 0 / 12 / 4 / 7 / 8 / 3 / 4 / 38
Q16E: Decreased neck flexibility / 0 / 8 / 7 / 8 / 8 / 2 / 5 / 38
Q16F: Poor posture / 1 / 6 / 11 / 8 / 5 / 5 / 2 / 38
Q16G: Weak trunk (core) muscles / 0 / 4 / 4 / 8 / 11 / 4 / 7 / 38
Q16H: Back weakness / 0 / 6 / 7 / 7 / 6 / 6 / 6 / 38
Q16I: Weak chest muscles / 0 / 10 / 12 / 5 / 6 / 3 / 2 / 38
Q16J: Abdominal muscle weakness / 0 / 8 / 9 / 7 / 8 / 4 / 2 / 38
Q16K: Unable to get out of bed due to weakness / 0 / 20 / 6 / 5 / 3 / 2 / 2 / 38
Q17A: Difficulty cleaning a house / 1 / 7 / 4 / 6 / 10 / 6 / 4 / 38
Q17AA: Difficulty doing yard work / 1 / 6 / 4 / 4 / 7 / 8 / 8 / 38
Q17B: Difficulty getting in and out of vehicles / 1 / 2 / 8 / 7 / 10 / 7 / 3 / 38
Q17BB: Difficulty getting out of a tub or shower / 1 / 10 / 2 / 8 / 4 / 7 / 6 / 38
Q17C: Problems preparing food / 1 / 15 / 5 / 6 / 7 / 2 / 2 / 38
Q17CC: Difficulty changing a light bulb / 1 / 16 / 5 / 3 / 7 / 2 / 4 / 38
Q17D: Problems getting dressed / 1 / 15 / 6 / 9 / 3 / 2 / 2 / 38
Q17DD: Not able to hike / 2 / 7 / 4 / 7 / 2 / 3 / 13 / 38
Q17E: Difficulty maintaining a home / 1 / 12 / 3 / 7 / 8 / 2 / 5 / 38
Q17EE: Difficulty putting on shoes / 1 / 19 / 3 / 6 / 5 / 1 / 3 / 38
Q17F: Difficulty playing sports / 1 / 4 / 2 / 4 / 7 / 4 / 16 / 38
Q17FF: Difficulty cutting or manicuring nails / 1 / 21 / 3 / 6 / 2 / 3 / 2 / 38
Q17G: Impaired sexual function / 1 / 12 / 4 / 6 / 4 / 4 / 7 / 38
Q17GG: Difficulty shoveling / 1 / 6 / 9 / 4 / 6 / 1 / 11 / 38
Q17H: Impaired dancing / 2 / 4 / 5 / 4 / 8 / 4 / 11 / 38
Q17HH: Trouble standing on a chair / 3 / 4 / 4 / 6 / 7 / 2 / 12 / 38
Q17I: Trouble riding a bike / 3 / 5 / 4 / 5 / 6 / 2 / 13 / 38
Q17II: Difficulty taking care of pets / 5 / 21 / 1 / 4 / 2 / 1 / 4 / 38
Q17J: Having to modify a house to accommodate for disability / 2 / 21 / 4 / 1 / 4 / 3 / 3 / 38
Q17JJ: Difficulty making bed / 2 / 15 / 5 / 5 / 5 / 2 / 4 / 38
Q17K: Difficulty driving a motor vehicle / 1 / 25 / 6 / 1 / 2 / 1 / 2 / 38
Q17KK: Difficulty maintaining personal hygiene / 1 / 26 / 4 / 2 / 1 / 2 / 2 / 38
Q17L: Problems shopping / 1 / 13 / 7 / 4 / 7 / 2 / 4 / 38
Q17LL: Difficulty using a computer keyboard / 1 / 26 / 3 / 2 / 2 / 3 / 1 / 38
Q17M: Trouble with going up step ladders / 2 / 5 / 5 / 4 / 4 / 6 / 12 / 38
Q17MM: Impaired safety because of illness / 2 / 17 / 2 / 6 / 4 / 3 / 4 / 38
Q17N: Difficulty bathing or taking a shower / 1 / 17 / 4 / 5 / 2 / 7 / 2 / 38
Q17NN: Difficulty using keys / 1 / 24 / 8 / 0 / 2 / 2 / 1 / 38
Q17O: Difficulty holding a milk gallon / 1 / 12 / 8 / 8 / 3 / 4 / 2 / 38
Q17OO: Difficulty cutting meat / 1 / 19 / 7 / 4 / 3 / 2 / 2 / 38
Q17P: Limited sexual positioning / 4 / 10 / 6 / 6 / 4 / 3 / 5 / 38
Q17PP: Difficulty using a hammer or other tool / 3 / 16 / 4 / 9 / 2 / 1 / 3 / 38
Q17Q: Unable to travel or tour / 1 / 15 / 5 / 4 / 3 / 3 / 7 / 38
Q17QQ: Worsening golf game / 11 / 17 / 2 / 1 / 3 / 0 / 4 / 38
Q17R: Unable to ride a motorcycle / 9 / 13 / 5 / 0 / 2 / 1 / 8 / 38
Q17RR: Difficulty with mopping / 2 / 13 / 8 / 4 / 6 / 0 / 5 / 38
Q17S: Unable to ice skate / 5 / 10 / 8 / 2 / 1 / 1 / 11 / 38
Q17SS: Not able to dust / 1 / 24 / 3 / 3 / 3 / 2 / 2 / 38
Q17T: Impaired ability to exercise / 2 / 4 / 3 / 9 / 7 / 6 / 7 / 38
Q17TT: Problems washing windows / 2 / 17 / 2 / 6 / 3 / 3 / 5 / 38
Q17U: Problems using buttons or zippers / 1 / 18 / 4 / 7 / 5 / 3 / 0 / 38
Q17UU: Difficulty lifting weights / 2 / 5 / 5 / 7 / 7 / 4 / 8 / 38
Q17W: Taking longer to do household chores / 2 / 9 / 6 / 6 / 7 / 5 / 3 / 38
Q17WW: Difficutly vacuuming / 1 / 14 / 6 / 7 / 3 / 4 / 3 / 38
Q17X: Difficulty washing dishes / 1 / 21 / 4 / 5 / 2 / 3 / 2 / 38
Q17XX: Difficulty painting / 3 / 12 / 5 / 6 / 5 / 4 / 3 / 38
Q17Y: Difficulty scrubbing surfaces / 1 / 13 / 5 / 6 / 6 / 3 / 4 / 38
Q17YY: Unable to turn on a light with a pull cord / 1 / 34 / 0 / 0 / 0 / 3 / 0 / 38
Q17Z: Difficulty swimming / 4 / 14 / 6 / 6 / 3 / 0 / 5 / 38
Q17ZZ: Difficulty tying shoes / 1 / 28 / 3 / 2 / 0 / 2 / 2 / 38
Q18A: Diffuse pain / 3 / 12 / 6 / 6 / 1 / 4 / 6 / 38
Q18B: Chest pain / 1 / 21 / 6 / 5 / 4 / 1 / 0 / 38
Q18C: Leg pain / 0 / 9 / 3 / 7 / 8 / 5 / 6 / 38
Q18D: Hip pain / 0 / 11 / 6 / 6 / 6 / 6 / 3 / 38
Q18E: Neck pain / 0 / 11 / 4 / 9 / 7 / 3 / 4 / 38
Q18F: Sore or achy muscles / 0 / 7 / 2 / 8 / 7 / 8 / 6 / 38
Q18G: Back pain / 0 / 7 / 6 / 8 / 3 / 9 / 5 / 38
Q18H: Limited activity from pain / 1 / 13 / 4 / 6 / 3 / 5 / 6 / 38
Q18I: Foot pain / 0 / 19 / 2 / 4 / 5 / 5 / 3 / 38
Q18J: Pain during sex / 2 / 24 / 2 / 5 / 0 / 2 / 3 / 38
Q18K: Arm pain / 0 / 22 / 2 / 5 / 3 / 0 / 6 / 38
Q18L: Shoulder pain / 1 / 20 / 3 / 3 / 4 / 2 / 5 / 38
Q18M: Muscle pain after exertion / 0 / 6 / 4 / 8 / 8 / 7 / 5 / 38
Q19A: Arm weakness / 0 / 5 / 8 / 8 / 7 / 7 / 3 / 38
Q19B: Difficulty lifting objects / 0 / 2 / 5 / 8 / 10 / 9 / 4 / 38
Q19C: Shoulder weakness / 0 / 11 / 4 / 6 / 8 / 5 / 4 / 38
Q19D: Difficulty reaching items on the back of a shelf or fridge / 0 / 13 / 6 / 9 / 5 / 1 / 4 / 38
Q19E: Difficulty lifting children / 2 / 6 / 4 / 4 / 5 / 8 / 9 / 38
Q19F: Difficulty brushing or washing hair / 0 / 22 / 4 / 4 / 3 / 2 / 3 / 38
Q19G: Difficulty carrying a load / 0 / 2 / 3 / 8 / 9 / 9 / 7 / 38
Q19H: Difficulty lifting laundry basket / 0 / 9 / 6 / 5 / 3 / 8 / 7 / 38
Q19I: Difficulty reaching things overhead / 1 / 10 / 6 / 5 / 6 / 3 / 7 / 38
Q19J: Reduced arm and shoulder range of motion / 0 / 16 / 6 / 4 / 4 / 2 / 6 / 38
Q19K: Difficulty putting away dishes overhead / 1 / 11 / 8 / 7 / 2 / 3 / 6 / 38
Q19L: Difficulty brushing teeth / 0 / 29 / 3 / 2 / 1 / 2 / 1 / 38
Total / 138 / 1875 / 681 / 799 / 786 / 599 / 708 / 5586

Survey F

TableofItembyResponse
Item / Response
Frequency / No response / Don't experience / Exp, does not affect life / Exp, affects life a little / Exp, affects life moderately / Exp, affects life very much / Exp, affects life severely / Total
Q11A: Memory deficits / 0 / 9 / 4 / 10 / 7 / 4 / 2 / 36
Q11B: Problems concentrating / 0 / 10 / 2 / 11 / 7 / 5 / 1 / 36
Q11C: Trouble finding the right word / 0 / 7 / 6 / 10 / 5 / 5 / 3 / 36
Q11D: Requirement for increased planning / 1 / 10 / 5 / 7 / 6 / 6 / 1 / 36
Q11E: Decreased motivation / 1 / 9 / 4 / 7 / 5 / 8 / 2 / 36
Q11F: Cognitive fatigue / 1 / 13 / 1 / 4 / 8 / 6 / 3 / 36
Q11G: Decreased ability to think fast / 0 / 9 / 4 / 7 / 7 / 5 / 4 / 36
Q11H: Difficulty with math / 0 / 16 / 6 / 7 / 3 / 2 / 2 / 36
Q11I: Problems reading / 0 / 14 / 7 / 5 / 9 / 1 / 0 / 36
Q11J: Being in a dream like state / 1 / 14 / 9 / 7 / 2 / 3 / 0 / 36
Q11K: Disorganization / 0 / 12 / 7 / 9 / 6 / 1 / 1 / 36
Q11L: Difficulty with comprehension / 0 / 14 / 7 / 7 / 5 / 1 / 2 / 36
Q11M: Reduced decision making abilities / 0 / 14 / 3 / 10 / 5 / 2 / 2 / 36
Q11N: Not able to focus / 0 / 11 / 4 / 13 / 4 / 4 / 0 / 36
Q11O: Confusion / 1 / 14 / 10 / 6 / 1 / 3 / 1 / 36
Q11P: Inability to keep appointments / 0 / 21 / 10 / 2 / 3 / 0 / 0 / 36
Q11Q: Learning difficulties / 1 / 16 / 4 / 8 / 3 / 4 / 0 / 36
Q11R: Visual spatial difficulties / 2 / 22 / 3 / 6 / 1 / 2 / 0 / 36
Q12A: Physical fatigue / 0 / 3 / 6 / 5 / 8 / 6 / 8 / 36
Q12B: Impaired endurance / 0 / 3 / 4 / 2 / 10 / 8 / 9 / 36
Q12C: Whole body weakness / 0 / 6 / 2 / 7 / 7 / 6 / 8 / 36
Q12D: Decreased energy / 1 / 3 / 5 / 5 / 8 / 7 / 7 / 36
Q12E: Prolonged recovery time after activities / 0 / 4 / 3 / 9 / 9 / 2 / 9 / 36
Q12F: Muscle fatigue / 1 / 4 / 3 / 9 / 7 / 6 / 6 / 36
Q12G: Lethargy / 0 / 9 / 7 / 4 / 5 / 6 / 5 / 36
Q12H: Decreased lower extremity stamina / 0 / 5 / 2 / 5 / 8 / 9 / 7 / 36
Q12I: Decreased activity level / 1 / 3 / 3 / 10 / 6 / 4 / 9 / 36
Q12J: Breathing difficulties / 1 / 17 / 7 / 6 / 2 / 2 / 1 / 36
Q12K: Tired muscles / 0 / 2 / 3 / 12 / 6 / 6 / 7 / 36
Q13A: Problems swallowing / 0 / 13 / 10 / 8 / 4 / 1 / 0 / 36
Q13B: Choking / 0 / 18 / 8 / 7 / 2 / 1 / 0 / 36
Q13C: Modification of diet due to choking / 0 / 28 / 3 / 3 / 0 / 1 / 1 / 36
Q13D: Fear of choking / 0 / 25 / 6 / 3 / 1 / 0 / 1 / 36
Q14A: Depression / 0 / 14 / 6 / 6 / 3 / 3 / 4 / 36
Q14AA: Self pity / 1 / 26 / 7 / 0 / 1 / 1 / 0 / 36
Q14B: Awareness of the disease getting worse / 1 / 5 / 7 / 9 / 4 / 5 / 5 / 36
Q14BB: Constant need to adapt to disability / 0 / 17 / 5 / 7 / 2 / 3 / 2 / 36
Q14C: Burden of thinking about the future / 0 / 13 / 7 / 5 / 4 / 3 / 4 / 36
Q14CC: Symptoms mistaken as another disease by others / 0 / 21 / 6 / 3 / 4 / 2 / 0 / 36
Q14D: Anxiety / 1 / 16 / 4 / 3 / 8 / 2 / 2 / 36
Q14DD: Difficulty letting people get close emotionally / 0 / 26 / 4 / 3 / 1 / 2 / 0 / 36
Q14E: Damaged pride with loss of independence / 0 / 16 / 6 / 6 / 1 / 5 / 2 / 36
Q14EE: Increased emotional sensitivity / 0 / 18 / 5 / 4 / 3 / 6 / 0 / 36
Q14F: Fear of falling / 0 / 9 / 5 / 7 / 7 / 0 / 8 / 36
Q14FF: Concern about heart problems / 0 / 12 / 7 / 7 / 3 / 5 / 2 / 36
Q14G: Moodiness / 1 / 16 / 6 / 6 / 4 / 2 / 1 / 36
Q14GG: Concern that your work will find out that you have an illness / 3 / 29 / 2 / 1 / 0 / 1 / 0 / 36
Q14H: Panic / 0 / 20 / 10 / 4 / 1 / 0 / 1 / 36
Q14HH: Changed perspective on how to live life / 0 / 13 / 4 / 8 / 4 / 5 / 2 / 36
Q14I: Frustration / 0 / 8 / 6 / 10 / 5 / 4 / 3 / 36
Q14II: Shyness / 0 / 21 / 4 / 4 / 4 / 3 / 0 / 36
Q14J: Embarrassment of disability / 1 / 20 / 5 / 6 / 2 / 1 / 1 / 36
Q14JJ: Hopelessness / 0 / 27 / 3 / 2 / 3 / 1 / 0 / 36
Q14K: Feeling of being overwhelmed / 1 / 14 / 4 / 5 / 6 / 5 / 1 / 36
Q14KK: Grumpy/argumentative nature / 0 / 22 / 4 / 5 / 4 / 1 / 0 / 36
Q14L: Increased stress / 0 / 10 / 6 / 9 / 2 / 7 / 2 / 36
Q14LL: Fear of a worsening ability to think / 0 / 14 / 7 / 9 / 0 / 5 / 1 / 36
Q14M: Decreased tolerance of others / 0 / 14 / 7 / 5 / 5 / 4 / 1 / 36
Q14MM: Fear of death / 2 / 25 / 6 / 1 / 1 / 1 / 0 / 36
Q14N: Generalized fear / 0 / 20 / 7 / 5 / 3 / 1 / 0 / 36
Q14NN: Feeling of losing control / 0 / 17 / 5 / 7 / 3 / 3 / 1 / 36
Q14O: Fear of injury with activity / 0 / 16 / 3 / 5 / 8 / 2 / 2 / 36
Q14P: Obession about the disease / 1 / 28 / 4 / 1 / 0 / 2 / 0 / 36
Q14Q: Grief / 0 / 22 / 7 / 4 / 2 / 1 / 0 / 36
Q14R: Keeping more to oneself (introverted) / 0 / 18 / 10 / 2 / 3 / 3 / 0 / 36
Q14S: Denial / 1 / 31 / 1 / 1 / 2 / 0 / 0 / 36
Q14T: Apathy / 0 / 24 / 2 / 5 / 3 / 2 / 0 / 36
Q14U: Decreased confidence / 0 / 17 / 3 / 8 / 3 / 3 / 2 / 36
Q14W: Anger / 0 / 20 / 3 / 8 / 3 / 1 / 1 / 36
Q14X: Loss of pride / 0 / 23 / 4 / 4 / 2 / 2 / 1 / 36
Q14Y: Sadness / 0 / 19 / 7 / 5 / 2 / 3 / 0 / 36
Q14Z: Isolation / 0 / 23 / 4 / 4 / 2 / 3 / 0 / 36
Q15A: Impaired self image / 0 / 15 / 10 / 4 / 2 / 4 / 1 / 36
Q15B: Skin abnormalities / 0 / 21 / 5 / 4 / 2 / 2 / 2 / 36
Q15C: Impaired body image / 0 / 16 / 5 / 9 / 2 / 3 / 1 / 36
Q15D: Worry about how others perceive you / 1 / 18 / 7 / 5 / 2 / 3 / 0 / 36
Q15E: Decreased muscle definition / 0 / 8 / 6 / 10 / 6 / 5 / 1 / 36
Q15F: Self conscious of muscle loss / 0 / 11 / 8 / 7 / 5 / 4 / 1 / 36
Q15G: Hair loss / 0 / 25 / 5 / 2 / 1 / 2 / 1 / 36
Q15H: Embarrassment in wearing a bathing suit / 0 / 13 / 7 / 4 / 2 / 6 / 4 / 36
Q15I: Impaired body image due to abdomen protrusion / 1 / 17 / 4 / 2 / 3 / 5 / 4 / 36
Q15J: Impaired body image due to gait / 0 / 20 / 6 / 2 / 3 / 4 / 1 / 36
Q16A: Cataracts / 0 / 16 / 8 / 1 / 6 / 3 / 2 / 36