How well are you being served?

[sfoltz]

I am a nursing grad student and I have a close friend with ALS, he is now on a vent and living at home. I would like to know your views on the following 5 questions, a simple yes or no or elaborate as you have time. Thank you your input is greatly appreciated.

1. Was it difficult to find a knowledgeable primary provider?
2. Have you been unable to obtain or delayed in obtaining necessary medical care, dental care, or prescription medicines?
3. Do you feel you have friends or family members with whom you can talk about your illness?
4. Do you feel enough information is provided on ALS related Websites to determine the reliability of the information that is presented?
5. Given the restrictions ALS imposes on movement and communication are Websites accessible (well organized, easy to navigate)?

 

[trfogey]

1. Was it difficult to find a knowledgeable primary provider?

No. But I live within 30 miles of two major medical schools and research/training hospitals.

2. Have you been unable to obtain or delayed in obtaining necessary medical care, dental care, or prescription medicines?

No.

3. Do you feel you have friends or family members with whom you can talk about your illness?

Yes.

4. Do you feel enough information is provided on ALS related Websites to determine the reliability of the information that is presented?

Not really.

5. Given the restrictions ALS imposes on movement and communication are Websites accessible (well organized, easy to navigate)?

No. I have yet to find any websites that are friendly to motor-impaired users. If you know of any that claim to be designed to be accessible to motor-impaired users, I'd be happy to test them out and give you an opinion.