It’s insanely hard to convince others (old school fitness buffs, especially) most of the weight I’ve gained is, in fact, muscle mass. Most dystonia/Parkinson’s sufferers have to lift weights as often as we can to restore power to our limbs. It’s what they teach us in PT. We have to retrain our nerve connections to enable movement again, perhaps even improve balance, strength, and dexterity. Weights and regular cardio do make us stronger. It’s not a perfect fix, but it helps.
But that means we hardly ever lose weight. Fat is easier. With the right diet and fitness regime (plus discipline), those burn off like crazy. But muscle? It’s seriously difficult to trim down, much totally lose, muscle mass. I used to pump weights (not barbells, they’re not advisable since they’re too big) daily for years. I wrapped ankle weights around my legs and walked around like that till I buckled. I increased the load the better my endurance got. I did that for a very long time. Got all bulky and sh*t. Whatever fat I had then was converted into muscle.
Most of that stuck even after slacking off, but most people (even trained therapists) see it as fat. I did gain some, but 70% of it is still heavy muscle. I just get so annoyed every time someone says I got fat, because it’s hardly the complete story. I do regret bulking up this much, but it does lend nicely when I’m trying to keep my muscles strong against the everyday nuisance that is dystonia.
Disclaimer: I did gain some fat weight and water weight, and that was completely my mistake (it’s mostly depression though), but what you’re seeing when you see my broad shoulders and yes them lovely lady humps is all solid muscle. Most of the fat I did gain collected around my belly, because my generalized dystonia doesn’t allow me to do sit-ups hence that’s the only part of my body that doesn’t really get much exercise.
*Clarification since I got asked: Most people with movement disorders have thinning muscle mass in general due to lack of mobility and muscle atrophy. We can literally feel our body melt muscle just from having say dystonia. It’s what creates and reinforces the sensations we feel daily, including weakness. So without weights and regular cardio, we can’t move as well and there’s really no hope of getting that muscle mass back. The point of this particular routine is to keep strong, combat the symptoms of dystonia. Otherwise we’d just be lying around absolutely frail forever. The body does forget over time the longer it’s not exposed to the miracle of movement.
Which is exactly what happened to me for 2 years, until my mom dragged my stubborn ass to PT. I couldn’t walk for 2 years, but regained part of my strength enough after just 2 months. That’s how important this is, and why I decided it was ok to bulk up against everyone’s advice. I don’t know, it’s just... looking a little blocky? Is better than not being able to walk. Atrophy is common among us, and it ain’t fun. And it was just nice to feel stronger even if I wasn’t in reality.
I think the problem is I went overboard with bulking up. I didn’t just pump weights; I also developed an increased desire for more protein (understandable given what I was doing). I ate 5 ribeyes a month, had about 3 large eggs daily, got addicted to cheese, and consumed too much protein bars and protein shakes. So I ended up building more muscle than needed. I don’t know; I just get hungrier every time. I can’t help it. But maybe that’s the part I need to work on.
