Food for Thought: A Lifestyle to Keep my Brain Healthy

Lots of people ask me if there’s anything I can do to prevent the onset of genetic ALS/FTD. As a carrier of the C9orf72 genetic mutation, it’s something that I keep my mind open to. Science evolves quickly, and what’s considered healthy one day can be seen as dangerous the next.

Since being diagnosed as a genetic carrier of a pathogenetic mutation, I’ve searched for a “magic bullet” that will protect me, but the reality is that there isn’t one. So, under the supervision of a nutritionist and of my neurologists, I’ve decided to live a brain-healthy life.

Before I launch into all the things I do to keep ALS/FTD at bay, I need to disclose two very important things. First: what’s neuroprotective for me may not be what’s neuroprotective for you. Second: I cheat a lot. If I want to celebrate my anniversary with my husband, I will drink Champagne. And if I eat a little dark chocolate each day, I do it because it makes me happy. 

Nearly everything I’ve read says that there are things that are risk factors for Amyotrophic Lateral Sclerosis. The first one is concussive brain damage. If you hit your nugget too hard or too many times, you can develop ALS. So, I don’t play football, go snowboarding without a helmet, or go mountain biking. And that’s okay because I don’t like those sports anyway.

The second big risk is military service. Veterans are nearly twice as likely to develop brain damage than most other people. Nobody knows if it’s the nature of concussive brain injury in the military that causes ALS, or if it’s the chemical exposure that does it. And I’m not thinking of joining the military, so I don’t worry about that either.

Another risk, as I mentioned above, is chemical exposure to neurotoxins. The most common chemical exposures are in the military and near toxic waste dumps. I live in Northern California, in Marin County, where we don’t have toxic waste dumps here.

Obviously, smoking is a risk factor for just about everything, and the lung damage it causes inhibits your ability to get enough oxygen to the brain. Not only that, but it’s disgusting, and the only cigarette I ever smoked in college made me barf, so I don’t do that either.

Alcohol is also a neurotoxin. That means it’s poisonous to the brain. I avoid it most times, although I do admit to drinking a glass of wine on special occasions. For me, that’s about one glass, once a month. 

I’ve read a lot about high cholesterol being something that can be a risk factor for ALS. It’s also a risk factor for heart disease and stroke. I’ve had high cholesterol since I was an 80-pound weakling in middle school. I’ve been on cholesterol medication since I was in my 30’s, and I don’t eat red meat, egg yolks, or much dairy.  

There are also medical procedures and cosmetic “upgrades” that I’ve read that can be risks for ALS. General anesthesia, especially for people who get multiple surgeries, can be very dangerous for brain health. So, you won’t see me getting liposuction, a boob job, or a tummy tuck. And if you’ve seen recent ads for Botox, they say that side effects can worsen ALS symptoms. It can make muscles in the face weaker, causing swallowing difficulties and bulbar symptoms like slurred speech. I’m happy with my face, wrinkles and all. No biggie.

Don’t even get me started on Ozempic. The jury’s still out on whether it causes brain damage, muscle-wasting, or wear and tear to the nerves. I’m probably twenty pounds overweight after going through menopause, and I’m fine with that. If it’s a choice between dropping those pounds and getting ALS/FTD or being a little chubby and keeping my motor neurons, I’ll choose chubby.

So, those are the things I don’t do. Here are some of the things I do to keep a healthy brain and body. First, and most importantly, I consult with my doctors and nutritionists before I do anything new. I never go on a new supplement or diet without clearing it with the experts first!

Also, I’ve worked out in a gym since I ran on the HPHS track team at age 14. After spending more than 40 years lifting weights, jumping rope, running, and doing core and balance exercises, I know that I’m happier when I get a good sweat on. I also know that regular, moderate exercise is linked to a healthy heart, a more focused brain, and lower cholesterol. Even now, at 55, I go to the gym a minimum of four times a week. I also walk the dog at least five times a week. The 20 or 30 minutes outside each day in the California sun (or rain) does wonders for me and for Dusty, our 14-year-old mutt. 

As I mentioned, I’m taking medication for high cholesterol, but it’s not a statin. The statins I’ve tried had horrible side effects that included muscle cramping and spasms that looked like ALS fasciculations (twitching). Instead, I take a mega-dose (4GM/day) of pharmaceutical-grade Omega-3, which keeps my cholesterol numbers within a normal range. Omega-3 is neuroprotective and also helps to strengthen nerve fibers and connective tissue. 

I also take B12, which is recommended for ALS patients. It’s said to improve nerve function and cognitive function, too. My neurologist and nutritionist both love for me to be on it!

I’m also on Riluzole, an ALS drug. There’s never been any research on whether taking an ALS drug before disease symptoms can prevent onset. It’s the oldest ALS drug and it’s been around since 1995. I have no side effects from it, and my liver function is tested every three months, just to make sure liver damage, which can sometimes happen, isn’t occurring in me. I’m being followed by Synapticure, which provides virtual care for people with ALS and other neurodegenerative diseases. My neurologist has been following my progress on it, as well.

This is not a comprehensive list of all my dos and don’ts, but it may give you an insight into this neuroprotective lifestyle I live. It’s not a fad; this is something I’ve done for many years. For more on what I’ve done to keep ALS/FTD at bay, please check out my book, Last Nerve: A Memoir of Illness and the endurance of Family!