- Joined
- Nov 18, 2014
- Messages
- 4,887
- Reason
- PALS
- Diagnosis
- 08/2015
- Country
- US
- State
- South
- City
- The Beach
1. Don't fall and don't take risks that might lead to a fall.
2. Get other conditions treated early. I have hemorrhoids and should have had them taken care of last Spring. Now I'm in so much pain and still have them.
3. Understand progression rates can and do change
4. Get a local neurologist and good primary care physician who will work with you if your clinic is far away. Cooperation and compassion is just as important as knowledge when it comes to ALS.
5. If you live alone, make sure you have a support system and a plan in place for when you can no longer live alone. Don't count on all your friends to stay around. Some of them won't be able to handle it or are too busy themselves.
6. Start a "lotsa helping hands online help community and get friends and family on board to help with rides, means, whatever. It is how my rides are coordinated.
7. Figure out a way to manage your pain.
8. Let others know your routine, your med list, your wishes. You will have a progressive loss of control of everything so someone needs to be able to take over things. Please let someone in on your finances whom you can trust. Don't wait.
Educate as many people as you can. Please add to this list. I'm uploading the ALS Awareness Document because some health care providers appreciated it and it helped others understand the disease.
2. Get other conditions treated early. I have hemorrhoids and should have had them taken care of last Spring. Now I'm in so much pain and still have them.
3. Understand progression rates can and do change
4. Get a local neurologist and good primary care physician who will work with you if your clinic is far away. Cooperation and compassion is just as important as knowledge when it comes to ALS.
5. If you live alone, make sure you have a support system and a plan in place for when you can no longer live alone. Don't count on all your friends to stay around. Some of them won't be able to handle it or are too busy themselves.
6. Start a "lotsa helping hands online help community and get friends and family on board to help with rides, means, whatever. It is how my rides are coordinated.
7. Figure out a way to manage your pain.
8. Let others know your routine, your med list, your wishes. You will have a progressive loss of control of everything so someone needs to be able to take over things. Please let someone in on your finances whom you can trust. Don't wait.
Educate as many people as you can. Please add to this list. I'm uploading the ALS Awareness Document because some health care providers appreciated it and it helped others understand the disease.