Delaying Progression

[Youngcrow]

Hi everyone, I am new to this forum. I thought I would jump in here. I recently have been diagnosed with Bulbar. Started noticing slurring last December 2020, but family didn't notice until May of this year. Now it is hard to speak clearly at times. Swallowing is a challenge. I use a straw with my head down to drink water and swallow pills. Rilozule and Nuedexta. Recently saw a neurologists who prescribed many types of vitamins to possible slow the progression. Which means more pills. I will share the list of what was prescribed later. I still have full function of my limbs. I am interested in seeing what others are using as well and comparing notes.

 

[lgelb]

In addition to recommended supplements, there is a long list of "boring but important" ways to extend quality and quantity of life in ALS. These include simple things like keeping your weight up with a wholesome diet [a BMI of ~31 is a sweet spot], staying hydrated, getting sound sleep, living your life (safely, from a Covid perspective), etc. and being ready to accept mobility and respiratory support equipment as the needs arise, make a big difference in your quality/quantity of life. There is also increasing that "real food" as opposed to corn syrup-based tube formulas or junk is critical to supporting the disordered metabolism of ALS.

If pills are tough, consult the "Do Not Crush" List and then crush what can be into non-dairy pudding or applesauce, with some warm water if needed. Some meds and vitamins have liquid forms. There is usually an alternative for what's not crushable.