When I was 25, I had a plan for aging. I was going to be famous first. Personal trainer, nutritionist, doctor on call. The whole setup. And I’d stay more or less the way I was for as long as that lasted. It was a good plan. It required a specific level of fame. I got the other kind.
Cerebral palsy doesn’t get worse, but I’m aging just like everybody else. A body that’s been compensating and straining for four-plus decades starts to feel it. There’s a name for it: Post-Impairment Syndrome. The muscles fatigue faster. The pain shows up in places it didn’t used to. The mechanics of a normal day require more than they did at 25.
I knew all of this was happening to me. I just didn’t tell anybody.
Many people in this world are hurting and want you to know it. I understand the impulse. I’m not judging it. But I was not going to be one of them. So I dealt with the fatigue and the pain quietly and kept moving. For a long time, that was the whole strategy.
Around 2012 or 2013, a physical therapist had me get into a standing frame for the first time since I was about ten years old. If you don’t know what a standing frame is, it’s a piece of equipment that holds a wheelchair user upright, vertical, and weight-bearing for extended periods. The physiological benefits are real. The experience of getting back into one after decades was not pleasant. They cleared the room the first few times I went up. I’ll leave it at that.
The process also required medication. Baclofen is a muscle relaxant for spasticity that kids with CP are often started on early now, but it wasn’t standard practice when I was growing up. Baclofen wasn’t even originally developed for spasticity. It was first synthesized in 1962 as a potential treatment for epilepsy, and it didn’t work for that at all. But researchers noticed it reduced muscle spasticity as a side effect, and by 1971 it had found its actual purpose. I didn’t start taking it until my 30s. It helped. I kept taking it for years without thinking much about it.
Then, somewhere around 2022 or early 2023, I ran out. The doctor needed to update my prescription. That took four or five days. After those four or five days, the withdrawal started. Sweaty palms. Not feeling well. The kind of symptoms you see from someone coming off something they depend on.
Somewhere in the middle of feeling terrible, a thought hit me: if my body reacts like this when it doesn’t have something, I don’t need that something.
I stopped tolerating and started experimenting.
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I drink somewhere between 80 and 100 ounces of water a day. I’d much rather have a Dr Pepper. I do this because the nursing home is coming for me sooner than I’d like, and I’m doing everything I can to hold that off. Water. Of all the things I changed, this one moved the needle more than I expected. The difference in daily pain and muscle fatigue was not small.
I get a massage three days a week. Not because it’s relaxing, not because I look forward to it, but because my muscles need it and my body performs better when it gets it. It’s maintenance. The same way you change the oil in a car, not because the car enjoys the process but because you want it to run.
I’m back in a standing frame more than five hours a week. That same piece of equipment I cursed my way through in 2012 is now a non-negotiable part of my week. It still hurts. My body is tight, and not paralyzed. Holding a position that long takes a toll every time. After two hours in it, I’m ready to get out. But the benefits to my bones, my circulation, and my core are worth it. I stopped accepting how I felt as just the fixed cost of having CP.
I’ve also added supplements and gotten more intentional about sleep and food, though maybe not in the way you’d expect. It’s less about what I eat and more about when and how much. The supplement list isn’t complicated: Juice Plus vitamins, calcium, magnesium, vitamin K, and a digestive acid supplement after meals. Not an acid reducer. An acid supplement. Your stomach needs acid to digest properly. I wasn’t getting enough.
None of this happened all at once. It’s been years of paying attention, noticing what works and what doesn’t, and being willing to actually change habits when the data from my own body told me to.
Do I have more muscle control issues at 47 than I did at 30? More spasticity, more involuntary movement? Yeah. Of course. That’s aging with CP, and I’m not pretending otherwise. But in terms of how I actually feel day to day? I have less pain now than I did in my 30s. Not standing-frame pain. The baseline kind. Sitting in this chair for 16 hours and being able to work through it. Going somewhere and actually feeling decent when I get there, without spending every bit of energy just holding it together. In my 30s, holding it together was the whole job.
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The people who write about biohacking are mostly writing for a very specific audience: young, able-bodied, usually well-resourced, usually male, optimizing for performance from a decent baseline. That’s fine. There’s a market for it. But the conversation rarely includes the person who started below that baseline and has to think about this stuff not as optimization but as a survival strategy.
I’m not here to tell you what to do with your body. Everybody’s situation is different, and what worked for me took years of experimentation and a level of self-awareness I had to develop on purpose, and I’m still tweaking. Most mornings I’d rather have a donut. I don’t. Same reason I drink the water.
I started it because I ran out of medication, felt what that felt like, and decided I wasn’t going to accept it. CP is not something I can fix. If there’s a way to get closer to normal, I’m going to find it.
