- Joined
- Jul 25, 2015
- Messages
- 1,606
- Reason
- CALS
- Diagnosis
- 07/2015
- Country
- US
- State
- tx
- City
- Dallas
Hello everyone! I haven't posted much lately due to work and a very busy schedule. However, I do value the knowledge and opinions of everyone here. I need some advice.
Several months ago I responded to Dr Bedlack on something he had on the net. I sent him an email and was amazed that he replied the next day which was a Saturday. He also promised to put Steve on the list for the Lunasin trial. I went about life and forgot about it.
Yesterday, I received an email stating that Steve has been chosen for the trial. Now for the advice.
Steve would have to fund his own way there from Texas and would need to go there three times in a year. I would need to go with him which means time off work and plane tickets for me unless we can drive him there which is a long trip. Steve is also in the Tirasemtiv trial and not sure what that will mean.
I have ready the stickies, researched on the Internet, watched Dr Bedlack video and still am not sure if there is enough evidence of improvement with this drug to justify the time and expense to get in the study. We would jump at the chance if there was enough proof to justify it. I do admire Dr. Bedlack and would love to have Steve under any type of his care even if it's for a trial. I also feel very fortunate that we have a chance for any of his trials. It's the expense, time and getting Steves hopes up for nothing.
Advice, thoughts, and experience will be greatly appreciated. I am torn as what to do.
Several months ago I responded to Dr Bedlack on something he had on the net. I sent him an email and was amazed that he replied the next day which was a Saturday. He also promised to put Steve on the list for the Lunasin trial. I went about life and forgot about it.
Yesterday, I received an email stating that Steve has been chosen for the trial. Now for the advice.
Steve would have to fund his own way there from Texas and would need to go there three times in a year. I would need to go with him which means time off work and plane tickets for me unless we can drive him there which is a long trip. Steve is also in the Tirasemtiv trial and not sure what that will mean.
I have ready the stickies, researched on the Internet, watched Dr Bedlack video and still am not sure if there is enough evidence of improvement with this drug to justify the time and expense to get in the study. We would jump at the chance if there was enough proof to justify it. I do admire Dr. Bedlack and would love to have Steve under any type of his care even if it's for a trial. I also feel very fortunate that we have a chance for any of his trials. It's the expense, time and getting Steves hopes up for nothing.
Advice, thoughts, and experience will be greatly appreciated. I am torn as what to do.