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ALS Tips

For PatientsFor Family and FriendsFor Caregivers

For Newly Diagnosed Patients

  1. Contact the Prisma Health ALS Clinic
  2. When comfortable, inform friends, family, and coworkers. There is no “easy” way to have this conversation, ALS sucks, so this will look different for everyone
  3. Assemble a small support team
  4. Lean into your spirituality
  5. Become an ADVOCATE for yourself! Ask questions and accept that many may not have answers
  6. Do something special for you
  7. Create a log of important passwords and dates
  8. Review your insurance(s)
  9. Consider Advanced Care Planning…Form/Update Will, Durable Power of Attorney, and Health Care Power of Attorney
  10. If you Own Real Property (House) and/or a Vehicle, confirm the Deed and Title is in your name and if married includes your name. If not, we would encourage you to re-file for some form of joint ownership for potential tax exemption purposes in the future. (If or when you become non-ambulatory)

For Patients

  1. Start journaling or blogging
  2. Evaluate your home’s accessibility
  3. Consider transportation options
  4. Simplify your finances
  5. Determine if you qualify for available financial programs, grants, or other offerings
  6. Consider changing account ownerships to include your spouse, Power of Attorney or Custodian
  7. Update Plans and Documents which have Beneficiaries
  8. Create a calendar of routine maintenance items in your house, automobile, etc.
  9. Consider purchasing a rubber stamp of your signature
  10. When your medical team determines you are non-ambulatory, research The Protection and Advocacy System for South Carolina ( for tax and special benefits for people with disabilities in South Carolina
  11. Consider getting help in your home before you really need it so that everyone has time to adjust
  12. Life is still happening and there is beauty in living each day. Don’t let the little things get in your way of living and loving
  13. When comfortable, do not be afraid to have direct conversations with loved ones about what life will be like without you
  14. Keep the FAITH
  1. Be very wary of the Internet
  2. Do not change how you interact with your friend or family member. They are the same person they have always been, that hasn’t changed
  3. Never be afraid to discuss hard things
  4. Continue to be present; don’t forget to laugh and enjoy living with your friend or family member
  5. Life is still happening and there is beauty in living each day. Don’t let the little things get in your way of living and loving
  6. If you see that a yard needs to be mowed, groceries need to be picked up, etc. Just do it!
  7. Reach out for help if you are feeling sad or overwhelmed
  8. Consider attending a support group
  9. Help educate patient and family members of available resources
  10. Keep the Faith
  1. Be very wary of the Internet
  2. No two patients are alike; ALS has no commonality
  3. To be the best you, you must take care of yourself
  4. ALS is the burden, not the patient
  5. It is normal to feel tired and overwhelmed
  6. Never be afraid to ask for help; people inherently want to help but don’t know what to do so ASK
  7. Consider reading books that are uplifting and educational
  8. Consider attending a support group

When all this started, I asked myself, ‘Am I going to withdraw from the world, like most people do, or am I going to live?’ I decided I’m going to live – or at least try to live the way I want, with dignity, with courage, with humor, with composure.
~ Mitch Albom, Tuesdays with Morrie