captaingary
New member
- Joined
- Jul 20, 2018
- Messages
- 4
- Reason
- PALS
- Diagnosis
- 06/2018
- Country
- US
- State
- fl
- City
- micco
Hi All. Very new to all this. Symptoms started about 7 months ago. After 4 Dr.s and 3 states they confirmed what I suspected from the beginning. ALS. Got to say it's harder on the people around me than it is me.
Got a few questions.
1. What legal forms do I need to prepare while I still can? Will. Do not resuscitate. Living will. Any place I can find them online and download? Need to be notarized?
2. Just started Riluzole. Any feedback on effectiveness or side effects? No insurance, just medicare. Paid $170 for 120 pills. Any suggestions on how to cut cost?
3. Starting clinical study on CK-2127107 Reldesemtiv next month. Anyone been on this drug?
4 Doing another clinical study on DNA. Since there is no ALS in my family, I just donated DNA for baseline of ALS.
Sooo many questions. Won't take up your time with them now. Hope I can find any replies. To say I'm not real sharp on computers would be an understatement.
Thanks in advance
Gary
Got a few questions.
1. What legal forms do I need to prepare while I still can? Will. Do not resuscitate. Living will. Any place I can find them online and download? Need to be notarized?
2. Just started Riluzole. Any feedback on effectiveness or side effects? No insurance, just medicare. Paid $170 for 120 pills. Any suggestions on how to cut cost?
3. Starting clinical study on CK-2127107 Reldesemtiv next month. Anyone been on this drug?
4 Doing another clinical study on DNA. Since there is no ALS in my family, I just donated DNA for baseline of ALS.
Sooo many questions. Won't take up your time with them now. Hope I can find any replies. To say I'm not real sharp on computers would be an understatement.
Thanks in advance
Gary