1998 Survey

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In 1998 we asked people to respond to a survey intended to “Help ST’rs”. Well, the outpouring was fantastic. Out of 380 surveys mailed out, results were received from 74 ST’rs. We thank all of you who responded and we know the results that follow will definitely help others who face their futures with ST. If nothing else, it will provide a great barometer on how well we all live with ST. Thus, the results:

TOTAL REPLIES 74

GENDER Female = 59 Male = 15

Questions asked:

DO YOU TAKE BOTOX? Yes = 51 No = 23

FOR HOW LONG?

1 year = 6 4 years = 4 7 years = 4 10 years = 5

2 years = 19 5 years = 10 8 years = 3

3 years = 7 6 years = 2 9 years = 1

HAVE YOU HAD SUCCESS?

Yes = 42 No = 7

TO WHAT DEGREE?

20% 2

40% 1

50% 6

60% 5

70% 10

80% 9

90% 7

100% 2

HOW LONG DO THEY LAST?

1 month = 1 3 months = 24 6 months = 4

2 months = 9 4 months = 3

HOW MANY UNITS DO YOU RECEIVE?

100 = 5

200 = 20

300= 12

400 = 5

HOW OFTEN DO YOU GO?

3 months = 19

4 months = 14

5 months = 4

6 months = 2

DO YOU HAVE ANY SIDE EFFECTS?

Flu-like symptoms = 4 Trembling = 1

Pain = 4 Swelling = 2

Tired = 2 Swallowing = 9

Muscle weakness = 2 Feel worse = 2

Wobbly neck = 4 More spasms = 4

None = 5

HAVE YOU HAD ANTIBODY BUILD-UP? 7

WHAT ORAL MEDS DO YOU TAKE?

None = 10 Valium = 2

Klonopin = 20 Cogentin = 2

Baclofen = 3 Myriad of others

Artane = 5

DO THEY HELP YOU?

Yes = 11 No = 3

WHAT SIDE EFFECTS DO YOU HAVE?

Drowsiness, appetite loss/gain, tired, itching, memory loss, dry mouth

(Myobloc was still not available at that time).

My mom and I wanted to thank you for hosting such a great symposium this year. This was our third year and we are looking forward to next years. E. Mathews