If you are reading my blog then you probably already know that certain groups of people are more likely to get ALS than your average couch potato. If not, Google search ALS combined with family history, Veterans, Football players, Fire Fighters, Police, Elite Athletes, or Nice People. Now that we are all on the same page, there are of course pressing questions about lifestyle choices if you have already been chosen for membership into the pALS club.
I am going to go into a lengthy description for why I have made the choices I have made, but I really hope that nobody mistakes this for advice or recommendations. I am not a scientist, health care provider, nutritionist or even someone with an education in human health. Furthermore, ALS is such a heterogeneous disease it is very likely that you and I don’t share the same causal mechanisms in the unique pathologies of our illnesses. The only advice I will give is that everyone should discuss these things with Healthcare providers. Now that we have that out of the way, here is a brief glimpse into the way I think.
If careers that demand fitness, and extreme fitness behaviors seem to lend themselves to more ALS diagnoses, that begs a serious question. Is exercise bad for ALS? You can find plenty of experts who disagree with each other on Doctor Google and absolutely drive yourself crazy. The only consensus seems to be that light exercise and passive stretching is probably not harmful.
The problem for me is that intense exertion and pushing physical boundaries is an essential part of who I am. I could limit myself and maybe prevent some harm to my body, but in some ways I would be allowing an unhealthy atrophy to my soul. This is my priority.
You see, I love going to the NAC and spending time with kindred spirits who understand the love of setting and achieving fitness goals. I love having my heart pounding and a burning in my arms and legs. I love when a friend sees sweat pouring down my face and into my eyes, and they come running to towel my face because they know I can’t. I may be helping or hurting my body, but I made the choice that this is something I wouldn’t want to live without.
Even healthy people drive themselves crazy trying to decide what they should or should not eat. There are a ton of things that could be harmful in the diet of an ALS patient. Some of the the things that have been suggested are refined sugars, GMO’s, MSG, glutamine, glutamate, aspartame, gluten, and about a million other things. You could spend every day reading the labels on everything you eat and probably still be getting something harmful. The other problem is that data seems to indicate maintaining a higher body mass index is somehow protective in ALS. The seeming opposites to conventional wisdom are absolutely maddening in this disease.
I decided a long time ago to focus on taking in what I should eat rather than avoiding what might harm me. At the very least this has preserved my sanity. And it allows me to enjoy food. So now I just make sure I get at least 15-20 servings a day of fruits and vegetables and at least a pound of meat. I also try to get at least one fermented food or beverage to support the microbiome. Beyond that everything is gravy. Or pizza and fried chicken.
I am sure almost every ALS patient has tried a thousand different GNC pills or powders in the hopes of putting a a dent in the obdurate monster that is our disease. I am no different. I am not going to give any advice or recommendations here because I don’t know literally anything. I will say I trust my neurologist to give me a straight opinion on whatever I ask him. I also trust him to admit when he has no clue. I hope you have a similar relationship with your Healthcare provider.
There are a lot of ways to mentally cope with a terminal illness. Conventional wisdom would indicate that acceptance is the ultimate goal for living in peace with your illness. This is probably true. Hell, everyone every one of us and everyone we have ever loved is going to die at some point. But even in acceptance, we have to allow for people who are born to fight. I like to think of all of this as a game that is most enjoyable when it is played to be won. That is why I get a lot of joy for all the reasons to maintain hope. Nurown works. Maybe not for everyone but we will zero in on that and soon. Up and coming are Copper ATSM, T Regs, AT1501 and more things than I can keep track of. This tells me the game is about to get exciting. I can’t wait