Impact of Late Onset GM2 | |||
---|---|---|---|
Question | Possible Answer | Numerical Value | Numerical Value Converted (For composite scale) |
This section relates to your ability to walk about from place to place. Please select the option that best describes how you are generally. | I have no problems walking about | 0 | 0 |
I am clumsy | 1 | 0.2 | |
I am unsteady on my feet | 2 | 0.4 | |
I can walk but only with assistance, particularly outdoors | 3 | 0.6 | |
I normally use a wheelchair outdoors. Inside/at home I move about on my feet but need assistance | 4 | 0.8 | |
I cannot walk at all and to get around I always use a wheelchair | 5 | 1 | |
This section relates to your ability to coordinate your movements. Please select the option that best describes how you are generally. | I have no problems coordinating movement | 0 | 0 |
My movements can be shaky or trembling | 1 | 0.25 | |
I have some problems with coordinating movement | 2 | 0.5 | |
I have problems with coordinating movement, but can still feed myself | 3 | 0.75 | |
I cannot perform any activities independently and need help to do everything | 4 | 1 | |
This section relates to your speech. Please select the option that best describes how you are generally. | I have no problems with speech | 0 | 0 |
My speech can be difficult to understand | 1 | 0.333 | |
My speech is very difficult to understand and really only people who know me very well can understand what I am saying | 2 | 0.667 | |
I cannot speak, but can communicate in other ways | 3 | 1 | |
This section relates to your ability to swallow. Please select the option that best describes how you are generally. | I have no difficulty in swallowing | 0 | 0 |
I chew abnormally | 1 | 0.25 | |
I sometimes have difficulty in swallowing, and may occasionally cough while eating or drinking | 2 | 0.5 | |
I have difficulty in swallowing every day, frequently coughing or choking on food or drinks | 3 | 0.75 | |
My difficulties in swallowing are so severe that I now must be fed by nasogastric tube or gastrostomy. | 4 | 1 | |
Do you think your cognitive abilities are impacted by late onset GM2 gangliosidosis? i.e. learning new skills, making decisions, following instructions, focusing your attention | Not at all | 0 | 0 |
A little bit | 1 | 0.333 | |
Quite a bit | 2 | 0.667 | |
Very much | 3 | 1 | |
Total Score | 19 | Â |