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I have the same. Hemiplegia of the right side. Mild, and my leg is more affected than my right arm hand. I've done very well, I think over the years, but I am 63, going to be 64 in October, and I am getting very tired. I work full-time and will be retiring on my birthday. I really can't believe the difference in how I feel moving from age 50+ into the 60's. It is a whole different world. Today I washed clothes, changed sheets on the bed, cleaned and wiped down the kitchen including washing the floor and I'm D.O.N.E. I don't know how old you are but just take it easy. I read somewhere that those with CP use 3x as much energy as those who don't. I used to have more energy. I don't know what happened. All my bloodwork is normal and I try to take care of myself.
Same right sided hemiplegia person here as well.. I notice as I’m aging as a 27F it’s really hard to have energy to do any chores or tasks needed to get done. I’m also noticing how much walking tires me out and throws my heel cord out. 2 miles and I’m done for.
Various articles I’ve read on the internet from experts have said that it’s normal to feel tired by your late twenties or it doesn’t hit you til you reach your 60’s it varies with everyone’s ability to do certain things and stuff
>[For example, individuals with cerebral palsy who are able to walk (ambulatory) require 2-3 times more energy to walk than typically developing peers. Individuals with dyskinetic cerebral palsy and dystonia also tend to have higher energy expenditures. This is because those with dyskinetic cerebral palsy often experience uncontrollable movements and appear to constantly be moving due to fluctuations in muscle tone. Continuous movement is continuous energy exertion, resulting in physical fatigue.](https://www.flintrehab.com/cerebral-palsy-and-fatigue/#2)
Have also seen the numbers 3-5x as much energy exertion than normal. It doesn't matter.
It's a fact that we have an increased energy output for basic tasks.
Happens.
Have been told that i just don't want to move anymore or that i'm terribly lazy when i was at my limit. People just assume stuff, also doctors don't know much if they're not specialized in this. Can't even blame your dad for that.
My mom didn't even know what i really had until i recently told her, because she misunderstood it. And our doc never bothered to correct her.
I’m a 27 F My parents think I’m lazy as well, I moved out last year and I noticed as I’m temporarily unemployed looking for work that my energy has decreased hugely. I try to do laundry, dishes clean my kitchen and bathroom. But by the time I get 1 thing done I’m so tired and putting so much work into my place looking so clean like my mom wants it to be. Hotel clean.
Which is why I was encouraged by my 36 yr old boyfriend and my case manager to get a manual wheelchair to help with long distance walking for my heel cord. Parents don’t see it as a good thing to have yet but my bf does.
Why are parents with children or adult children think this of us with cerebral palsy? Is it considered ableism?
Wouldn't say it's ableism but rather a thing that is connected to their own experience in addition to a lack of understanding but not necessarily ignorance.
"I could do x easily at your age, you're just lazy". Because they struggled at some point but managed to persevere, it's just the new gen that's fat and lazy. Every gen does this though.
Another probability might be that they just forget at times that the disability is a thing. It's a constant in our lives, not in theirs.
Tl;DR: Boomerisms
I'm almost 29 with left sided hemi. I work part-time and have other health issues besides CP. Tired is my new baseline. If I'm only tired and not in pain, it's a good day.
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I have the same. Hemiplegia of the right side. Mild, and my leg is more affected than my right arm hand. I've done very well, I think over the years, but I am 63, going to be 64 in October, and I am getting very tired. I work full-time and will be retiring on my birthday. I really can't believe the difference in how I feel moving from age 50+ into the 60's. It is a whole different world. Today I washed clothes, changed sheets on the bed, cleaned and wiped down the kitchen including washing the floor and I'm D.O.N.E. I don't know how old you are but just take it easy. I read somewhere that those with CP use 3x as much energy as those who don't. I used to have more energy. I don't know what happened. All my bloodwork is normal and I try to take care of myself.
Same right sided hemiplegia person here as well.. I notice as I’m aging as a 27F it’s really hard to have energy to do any chores or tasks needed to get done. I’m also noticing how much walking tires me out and throws my heel cord out. 2 miles and I’m done for. Various articles I’ve read on the internet from experts have said that it’s normal to feel tired by your late twenties or it doesn’t hit you til you reach your 60’s it varies with everyone’s ability to do certain things and stuff
Do you have problems with your Achilles tendon in your leg? I had to get mine operated on when I was 11 years old.
I’m trying to procrastinate that as long as possible right now because as of right now it’s only a flare up type situation
>[For example, individuals with cerebral palsy who are able to walk (ambulatory) require 2-3 times more energy to walk than typically developing peers. Individuals with dyskinetic cerebral palsy and dystonia also tend to have higher energy expenditures. This is because those with dyskinetic cerebral palsy often experience uncontrollable movements and appear to constantly be moving due to fluctuations in muscle tone. Continuous movement is continuous energy exertion, resulting in physical fatigue.](https://www.flintrehab.com/cerebral-palsy-and-fatigue/#2) Have also seen the numbers 3-5x as much energy exertion than normal. It doesn't matter. It's a fact that we have an increased energy output for basic tasks.
I’m always blamed by dad because I get tired. He shrugs and says that every body is the same.
Happens. Have been told that i just don't want to move anymore or that i'm terribly lazy when i was at my limit. People just assume stuff, also doctors don't know much if they're not specialized in this. Can't even blame your dad for that. My mom didn't even know what i really had until i recently told her, because she misunderstood it. And our doc never bothered to correct her.
Oh, my dad is to blame. He wants his “mental disability” to be the one that’s talked not mine.
I’m a 27 F My parents think I’m lazy as well, I moved out last year and I noticed as I’m temporarily unemployed looking for work that my energy has decreased hugely. I try to do laundry, dishes clean my kitchen and bathroom. But by the time I get 1 thing done I’m so tired and putting so much work into my place looking so clean like my mom wants it to be. Hotel clean. Which is why I was encouraged by my 36 yr old boyfriend and my case manager to get a manual wheelchair to help with long distance walking for my heel cord. Parents don’t see it as a good thing to have yet but my bf does. Why are parents with children or adult children think this of us with cerebral palsy? Is it considered ableism?
Wouldn't say it's ableism but rather a thing that is connected to their own experience in addition to a lack of understanding but not necessarily ignorance. "I could do x easily at your age, you're just lazy". Because they struggled at some point but managed to persevere, it's just the new gen that's fat and lazy. Every gen does this though. Another probability might be that they just forget at times that the disability is a thing. It's a constant in our lives, not in theirs. Tl;DR: Boomerisms
yes
Yes
I'm almost 29 with left sided hemi. I work part-time and have other health issues besides CP. Tired is my new baseline. If I'm only tired and not in pain, it's a good day.
Only constantly
Caffeine, but be careful because it's addictive up there with nicotine imo
I drink that once a day once
It wears off over time you gotta drink a lot to keep going I can drink 3 monsters in a day if it don't i pace myself. I'd advise against.
I can drink 1 black coffee with coconut oil and be energized for half of the day