Hope, thanks for the kind words. You'll find other threads on this. Things we often suggest include:
Nuedexta for bulbar symptoms (if it is not available, there are cheaper ways to get part of the efficacy)
Adequate hydration and no restriction on toileting (some PALS try to "hold it" due to lack of mobility, equipment and/or help)
Adequate nutrition, maintaining weight, a balanced but not "low fat" or "low carb" diet (ALS seemingly speeds up metabolism at least in part)
Starting BiPAP as soon as it can help, and adjusting the settings along the course of the disease. Some people need a suction machine, Cough Assist and/or oscillating vest.
Getting mobility devices as soon as needed (which means planning ahead) to avoid falls, including a floor or ceiling lift
Getting range of motion exercise and massage actively or later passively, throughout the disease
Getting out, being with friends and family
Staying in touch with friends/family from afar via email, Skype, Facetime, whatever works
Vitamin D supplementation if/as needed to avoid deficiency secondary to lack of outdoor activity
Other supplements that there is some [though not conclusive] science behind include compounds such as:
Turmeric
CQ10/other mitochondrial support
An established antioxidant such as grape seed extract or pine bark
Fish oil for eye and skin dryness
Some people here use pineapple/papaya tablets or juice, soda, Alka Seltzer for phlegm
Magnesium for cramps/constipation
Supplements interact with each other and with other OTC preps and prescription drugs, so always check your list against a database like drugs.com. It is also better to take supplements that are single-ingredient to minimize interactions, including ingredients that cancel each other out. Also, the fewer chemicals, the less the body has to metabolize, and it's already working overtime in ALS.
As usual, whatever I have forgotten I am sure others will add. And there are intangibles like having a pet if that is important, and planning in advance for financial issues and the end of life so they are not daily concerns. As with any chronic illness, stress never helps.
Best,
Laurie
