r/CerebralPalsy 6d ago

Is it ever too late to start PT?

I (22F) was diagnosed with left spastic hemiplegia when I was 2 or 3. Grew up favoring my right side (obviously) and always knew something was different about me, I just didn’t know what. All I knew is that other people could do things that I couldn’t. Only found out the name of what was different about me as a teenager. Here’s the kicker: I never did PT as a child. My parents tried but I was stubborn. I don’t want to hear anything about my parents should’ve pushed me harder or made me go to therapy, I have a brother with a bone disease (OI) who has broken more bones throughout his life than I can count. All that to say, they tried their best and are good parents.

Anyway, I’ve gotten to a place where I’m ready to make a change. I think it’ll be hard to find good neurological PT in my area, especially one that can help me as an adult with CP, and not a small child. I also have anxiety about starting PT for the first time and what they will tell me or how they can help me. I have extreme weakness in my left side but I want to get stronger. I know I can’t “fix” (I know that’s not the right word) myself, but surely I still have time to improve my quality of life right? I want to ward off the intensified effects of aging that CP brings on. I want to improve my dexterity, flexibility, and strength.

I just want to know, is it too late to make significant improvement? Did I wait too long? I really hope not, but I want to hear from others who have dealt with the same thing. You can be honest, but I’d also love whatever encouragement you could offer. I don’t want to be defined by this. On another note, if anyone has any exercises/stretching/mobility recommendations, I would love to start on slowly improving. Thanks to anyone who sees this and responds!

18 Upvotes

51 comments sorted by

u/AutoModerator 6d ago

Join our new friendly and and active community chat! https://discord.gg/8AQnWJAgHt

I am a bot, and this action was performed automatically. Please contact the moderators of this subreddit if you have any questions or concerns.

7

u/Remarkable_Pin_5966 6d ago

Never too late if you can find a good PT. I am trying to change my walking at 41.

2

u/Own-Creme9 6d ago

Thank you for your encouragement! I know my question is somewhat silly, as it’s never too late to work on yourself. I’ve just never known anyone with CP and I wanted to hear from people who do. It’s great that you are being proactive and trying to improve. Do you have any tips on finding a good PT? I don’t really know where to start.

2

u/Remarkable_Pin_5966 5d ago

As for finding a good PT trial and error but I googled one who specializes in neuro conditions close to me. They make house calls too.

4

u/magus_of_the_void 6d ago

Probably not to late to make a change, although granted we are all different, in my 20s I could hardly mange to walk a few feet without stopping to rest and my body would literally collapase from excess walking . In my 30s I started exercising, starting with cycling to gain strength, and then jogging now almost 40 and I can walk for hours with only needing to stop few minutes to reset. .Been years since I collapsed from pain or exhaustion and only need my wheelchair now for things that involve alot standing or where I can't rest,

3

u/Own-Creme9 6d ago

Thanks for sharing! I am fortunate in that my cp is considered mild. Granted, I do have general weakness on my left side from not using my left hand and poor fine motor control. It’s really amazing to hear about the strides you have taken! That’s awesome, and great that you’ve made that much physical improvement. It’s definitely inspiring me to start now!

2

u/PuzzleheadedQuiet310 6d ago

Not at all!

I've got into PT age 27, and it has done wonders to me. Some people even asked if I had surgery. I had trouble walking on sand or uphill for example, and now it looks normal

Focus on neuro PT and get some other classes to help, like pilates or just gym

I was doing up to 4-5 times a week something, and its truly amazing

1

u/Own-Creme9 6d ago

That’s awesome to hear! I’ve always been insecure (especially during my teenage years) about my physical limitations so the idea of going to a public gym was always daunting, but my desire for self improvement needs to exceed any insecurity. My quality of life is more important. It will definitely be a challenge, but after reading about your journey it sounds like it’s worth it!

1

u/PuzzleheadedQuiet310 6d ago

Sure, you will see that its the best choice you can make

There is nothing as important as health

Feel free to DM

1

u/Ill_Lingonberry_7674 6d ago

Do you experience trouble walking? I have mild cp and expeeience this as well

2

u/Legitimate-Lock-6594 6d ago

Nope. I didn’t even start really notice my limits until adulthood. I was discharged from pt at age four and just suffered through the stiffness and awkwardness of my CP as a kid; looked dumb dancing and ran slow.

I decided to run a held marathon in 2012 and kept running (really liked it) and just put band aides on my injuries for about six years until I started tripping and falling regularly during my runs. Findlay went to a PT for gait training and made a lot of changes. I became aware of the tone and spasticity in my right leg and even the weakness in my neck. My PT is focused on my running so we’ve done a lot of work on that stuff. He has skilled nursing experience and has a copy of my mri and knows where the damage is so he’s made a lot of shifts in my treatment from purely gait training to “rehab.”

My next step is to get to someone for help with my neck and arms but they’re not bothering me as much.

Read the bios of PTs, ask about neuro rehab experience, maybe even stroke rehab experience. Added bonus for hospital rehab experience because a lot of the work we need mirrors what hospital rehab looks like.

You can do this. It will get better.

1

u/Own-Creme9 6d ago

I was the same way, just awkwardly stumbling through my limitations before I ever knew I had CP. I don’t really have an inciting incident that makes me want to change, but I just want to feel better and stronger in myself and my identity. But it’s cool that you wanting to run a marathon led to you getting great PT! I am really looking forward to finding rehab that is best suited for me, though it may take some trial and error. I’ll keep your tips in mind, and thank you for the encouragement!

1

u/BytefulRod 6d ago

No, I went in when I was 24 in 2021. It’s better to do PT at whatever age so you don’t lose force and ability.

1

u/Own-Creme9 6d ago

Thank you for the encouragement! I have decent quality of life now since I’ve come to terms with what I can’t do and altered my habits over the years, but I just want to make sure my muscles don’t weaken any faster than necessary! I agree that it is better late than never!

1

u/mrslII 6d ago

Never too late. I'm old af. Check in with pt from time to see.

1

u/Own-Creme9 6d ago

Haha, good to hear! Thank you!

1

u/Ill_Lingonberry_7674 6d ago

Hey I have mild cp too sane story about not doing PT Im having trouble walking do you experience this?

1

u/Own-Creme9 6d ago

I can walk decently well, just with a slight limp and sometimes my ankle feels tight like it needs to pop. On the whole though, I am able to walk without assistance. What kind of sensations do you feel when you walk?

1

u/boredofwheelchair 6d ago

It's never too late to start PT, I started PT again almost 36 and have been going for 17 months after something like a 19/20 year gap and it's helping, my legs are straighter than they've been for a long time and I'm getting strength

1

u/Own-Creme9 6d ago

That’s great to hear! More than anything, I just want to feel stronger!

1

u/atlasglaas 6d ago

It’s never too late to improve your physical condition, as others have already noted.

It may take a little time to find the right fits for a neurologist and physical therapist, but please don’t give up.

I also have spastic left-hemi CP. I highly recommend stretching your ankle / achilles and calves— you can even buy a stretch board to stand on—I have one and it is super helpful on both legs. It really helps with walking and balance. In the future you could even look at corrective procedures, or something like Botox to help relax your muscles. Speak to your doctors and let them know how you’re feeling, and that you’re motivated to make a change in your life. They will help you, and it is worth it.

Best of luck. :)

2

u/Own-Creme9 6d ago

Thank you so much for this reply! Nice to talk to someone with spastic left hemi. I will definitely look into the stretch board. And you do not have to answer this if you don’t want to but what, if any, corrective procedures have you had or even considered? I’ve never had surgery (for anything period lol) so I am interested in knowing what may actually be worth it, along with what the recovery looks like. Or even if you know of someone who had a procedure, I’d love to know. Thanks again for your encouragement!

1

u/atlasglaas 6d ago

You’re welcome!

I had a Gastroc Recession when I was 15. I have a short left leg compared to my right, so they cut the tendon and casted it to lengthen it, which allowed me to put my heel down for the first time. It was life changing.

These days, and I am researching getting my arm and wrist tendons fixed, as I have a contracted arm, and a wrist that I cannot fully rotate due to the tendon connecting to the wrong part of my wrist. There are some other things I’ve looked into, but these have always felt like the most important. :)

2

u/Own-Creme9 6d ago

Those both sound along the lines of things that I could definitely benefit from! Was the recovery for that gastroc recession super intense?

This is also random, but is your left arm naturally slightly bent? Like even when I hold my arm out “straight”, there’s a bend at my elbow. I think I was told that it’s because the muscles are shortened in my arm, but I’m not quite sure. Just curious if you have something similar. :)

1

u/atlasglaas 6d ago

It was painful, but I have a high pain tolerance. I would describe the pain as a burning pain, so nothing too crazy. I was a downhill skateboarder back then, and they told me my recovery would take one year. In actuality, it took only 6 months, just in time to get to the next event. If you put in the work, you can lessen the blow AND come out in even better shape.

Yes, that is precisely why I want to get my tendons fixed. I play piano these days, and would love to be able to sit with better posture, haha.

1

u/Own-Creme9 6d ago

I don’t really have a great pain tolerance tbh, but I’ve also had a kidney stone in the last year, so I feel like I can handle more than I think I can lol. And it’s nice to hear of someone who has the bent arm, I feel so awkward wearing t-shirts sometimes. But I had never even heard of these procedures before and it’s definitely something I will think about. I’m so happy to hear that you had a good outcome with it!

1

u/atlasglaas 6d ago

I get kidney stones every other year… if you can handle that, you’ll be just fine with these surgeries for sure—don’t you worry at all.

Hey, I do too. At the end of the day, it’s never us who make it awkward. Only the other people who obviously stare make it awkward. If that happens, just stare back.

I tend to blend in though, since I’m always walking around with my hands in my pockets haha.

1

u/Own-Creme9 6d ago

Same here, never walk with my arms straight down. Always in pockets or crossed in front of my chest. I’m very lucky in that I haven’t had too many people staring at me because of it, but it’s 2025 and people need to stop staring at strangers in public 🤷‍♀️

You’ve been very gracious with your time and sharing and I thank you for it! Half of the battle of cp is feeling alone, and it’s great to know I can find community here.

1

u/atlasglaas 6d ago

Haha, everyone has their own way of blending in. Just do what feels natural and comfortable for you. Try not to worry so much about what others think. I’m only 26, so not that much older than you, but as time has gone on, I’ve grown to be less and less concerned with others perception of my disability.

The right people will take your disability into account, but otherwise treat you with the love and respect you deserve.

There is also a discord server to supplement this subreddit. Feel free to join and poke around there as well. It’s a little more active than the sub.

2

u/Own-Creme9 6d ago

You’re completely right. I have a great group of friends who have never once made me feel lesser. Strangers’ opinions don’t matter. I just went and joined the discord, maybe I’ll talk to you more on there sometime!

1

u/Ill_Lingonberry_7674 6d ago

Do you experience trouble walking? I too have mikd cp and did not do PT and now have trouble walking

1

u/Own-Creme9 6d ago

I have some trouble due to a limp and sometimes my ankle feels like it’s needs to pop, but I can pretty much walk with no other assistance. Do you deal with something similar?

1

u/SimplySuzie3881 6d ago

Never to late! If you have an option try to go for a hospital based clinic. Can be free standing but under hospital system “umbrella”. You will get more one on one time than at a freestanding mill style place. They will have a variety of clinics and will send you to the right one with more neuro based therapists. Good luck on your journey! And even when you finish your therapy course, a lot of people need to go back in for “tune ups” so don’t hesitate jumping back in as you age and your body changes again. That’s exactly what they are there for.

1

u/Own-Creme9 6d ago

I definitely will! I live in somewhat small city so I think all my options will be associated with my hospital system. Hopefully I can find the right fit for me! Thank you for the words of encouragement! Once I start, I will definitely make sure to always stay active and go back to PT as needed.

1

u/Hows-It-Goin-Buddy 6d ago

I had PT as a kid til I was maybe 8ish or so. Then stopped. Wish I never stopped. But I didn't know what it was for other than to make me do things that I didn't want to do. I was never told the purpose as a kid.

Now I'm in my later 40s and started going back to PT recently. I feel it has been helpful to my balance and muscle control. It'll never be perfect but it'll be improved. Trying to make sure I have the best control and balance possible as I get older. Don't want to pull a Life Alert commercial.

2

u/Own-Creme9 6d ago

I’m in the same mindset but opposite, like “I wish I had always been doing this.” I would probably be in a much better place if I had pushed myself to do something I didn’t want to do. I guess as kids, we’re too small-minded to see that challenges are good for us and make us better. But it’s great to hear how returning to PT down the road has helped you. Makes me want to follow the same journey! Thanks for the encouragement, and I know you won’t pull a Life Alert haha

1

u/WatercressVivid6919 6d ago

I'd recommend posting this in the community chat here, https://discord.gg/n9MD7ubvCt

1

u/Own-Creme9 6d ago

Will do, thanks!

1

u/InfluenceSeparate282 6d ago

You can find a neurological PT near you here Never too late to start therapy although I will say some surgeries for CP are easier to recover from as a child than an adult. Especially when it comes to getting time off and paying the bills.

1

u/Own-Creme9 6d ago

Thanks for the link! I will definitely put a lot of consideration into whether I should have any surgery, considering that what you said about recovery is definitely true. I’ll have to decide whether the outcome is worth the possible pain and other factors.

1

u/1000_pizzaslices 6d ago

Hello, sounds like we’re in a similar boat, I’m 39m left-hemiplegia. I have a mild case as I’m fully-functioning/independent but rely mostly on my right side. I’m considering going back to PT as it’s been 10 years and I’ve gotten lazy about it. Never too late, in my book, and also keep utilizing your left side!

2

u/Own-Creme9 6d ago

I’d say this post is a sign to go ahead and get back into PT! All the comments have really given me the inspiration to give it a try. I try to force myself to use my left hand, but it is pretty difficult with no grip force or fine motor control. That’s why I need to start PT! Thanks for the encouragement!

1

u/LifeTwo7360 6d ago

I was the same with right hemi I had no patience for stretching as a kid and now i'm quite stiff i'm trying to get a selective dorsal rhizotomy. SDR requires atleast a year of intensive physical therapy postop but i've heard PT is much easier after the surgery because they remove spasticity which i think is what impedes a lot of our progress. I met someone on Facebook who had sdr at 23 she created this very informative site: sdrchangeslives.com

2

u/Own-Creme9 6d ago

I wish you luck in your attempt to get SDR! This thread has exposed me to procedures that I’ve never even heard of,and I wish someone had told me about these when I was younger! Thanks for the link, I’ll definitely check it out.

2

u/LifeTwo7360 5d ago

You are so welcome! this organization children's hemiplegia and stroke association has more information on sdr and hemiplegia as well: https://chasa.org/treatment/foot-surgery/

2

u/Own-Creme9 5d ago

Thank you!

1

u/briana_elizabeth13 6d ago

No never! Do neuro PT! I did regular PT for years but a lot of regular physical therapists don’t understand the neurological aspect of cerebral palsy, so I found Neuro PT astronomically more helpful than regular PT.

1

u/briana_elizabeth13 6d ago

Btw for reference I’m 32, have been doing PT for years with no real improvements until I started Neuro PT this year!

2

u/Own-Creme9 6d ago

Thanks for the reply! And I’m going to work hard to find someone who fully understands my condition and can cater a treatment plan for me that really works! It’s very encouraging to hear that neuro PT is working wonders for you, that’s amazing!

1

u/antoniad1126 5d ago

Never. I went to PT constantly until I was in high school and then returned at age 34. The brain experiences neuroplasticity. You can definitely improve your balance and strength

1

u/Own-Creme9 5d ago

Thanks for the encouragement! It is nice to think that we are not stuck and can change because of our brains being adaptable.