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15 Things I Wish I Knew about ALS...

(August 2022) A few things that would have made the journey easier. Also can be applied for anyone dealing with a terminally ill parent.

1. There are other diseases that mimic ALS, like Lyme Disease and MS.

2. Prepare your family to have three-five caregivers, one for the morning, afternoon and night shift. The extra two are backup, when one of the primary caretakers need time off or call in sick.

3. Look into eye-tracking technology like Tobii. It is a life saver.

4. Change that bathtub for a no-floor shower

5. Consider moving to a more handicap apartment/house. Or making your current home situation more handicap-friendly.

6. It is going to be tough. Talk to a therapist. Talk to trusted friend. You will need a support system.

7. Today will be easier than tomorrow. Every day, the ALS patient’s mobility decays slightly.

8. Let the ALS patient consider visiting their will and adjust early on. (Baba did this right away at the 6 month mark)

9. Religious family members will constantly say there is a cure and it is from God.

10. There is no cure. Yet.

11. Locate your nearest physical therapy center.

12. Do not waste time fighting with your loved one, try your best to embody carpe diem.

13. Let yourself cry. By yourself, in front of your sick loved one, family. The cost of bottling it all in is extra years of going through therapy.

14. Take as many pictures & especially videos as you can of your loved one. Your future self will thank you.

15. You’ve been dealt a bad hand in life, what is going to be your next move?

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