I am a 30 year old mother of 3 with spastic cerebral palsy. I cannot tell you how much I relate to what you have said in this video. I too would like to see some demographics. From my 20's to my 30's felt like I aged forty years. All of the doctors I can find that specialize in CP are pediatric doctors. It is incredibly frustrating. I feel weary of what to expect as I age. I would love to know other adults. I would love some data on aging with CP, and what to expect.
People don't realize it becomes worse when you get older. Because it exasperates the aging process. I'm going on 47 and have mild cerebral palsy. Yes kids with C.P. grow up to be adults with C.P.
I am 68 years old born with CP have 2 sons one is deceased one granddaughter worked 25 years in food and retail It has not been easy life but still here has many other health problems wish there was a study for people over 60 with CP
It can be scary and daunting wondering how it will be for me in future years with my Cerebral Palsy. I'm 42 and it has gotten a bit more difficult getting around. All I can do try to keep strong both mentally and physically.
I have CP. I am 61. Turning 62 in October. I don't know of any doctors in my area who treat adults with CP. When I was 58, I learned how to ski. I was active until 2 falls put me in a motorized wheelchair.
I can relate to what you are saying I have Cp I’m 43 I was able to be much more active when I was younger but as I have aged the stress on my joints and spine have cause arthritis and I’m now a power chair user, you are so right that Cp is seen as something only effecting children, hardly ever see anyone in there 40s 50s 60s 70s we don’t just cease to exist after 18 years of age.
Thank you so much for your videos and thoughts and information you are a inspiration I see from your video and other comments that heaps of people with cerebral palsy are experiencing the same problems with health care I’m now 41 with cerebral palsy untreated for about 32 years and am no longer invincible 😂 The last dr senior rehab specialist i saw dr Craig Davenport said to me just because he isn’t very tall it doesn’t mean he is disabled 😅 The medical system for me In NSW Australia has been really really bad I have come to the conclusion that cerebral palsy is a field of medicine that few are interested and even less are trained to treat It’s sad but it is what it is To everyone that reads this hang in there and make all the cerebral palsy people heard of and understood I’m trying really hard but not having much success ❤
I have mild CP and when I turned 50 notice my Balance worsing. I am tripping more as I age, carpeted places are worse. I have a LOT more falls two. I.have ALWAYS had mild balance issues....with stairs or just one step. But now have trouble picking up my feet as I age .
My mum is turning 62 and she has cerebral palsy quite bad and ataxia she was married for 40 years till my dad died and also had 3 kids which is really good she enjoys life and has loads off friends and life left in her 💯❤️ keep up the good work
My mom is 86 yrs with Right side hemiplegia. She has 10 % use of her right hand. She broke her "good" side collar bone as a child and wrist when she was around 60. This has left her with about 50% range of motion with her left arm. She started using a walker at age 80, "reluctantly", mostly to keep me from hassling her about using it! I say that because my mother is one of the strongest people I know. She has never been on disability and worked until I was born. Married and raised two children. She has had bilateral hip replacements because of osteoarthritis, which really affects her back, neck and knees. The spasticity has really increased in her right leg.She cannot weight bear much on that side mostly because of the pain. She gets out of her chair every one to two hours to walk the floors because she knows she must keep mobile. I drive her three days a week to card clubs to socialize. I have never seen anyone my mom's age still ambulating like she does. She needs help with a lot of things in the last few years, and she now lives with me. Perseverance and determination are a HUGE part part of maintaining mobility in the elderly!
I am 23, I use a mobility scooter for long distances because my knee, hip, and lower back spasm really bad. My CP is spastic CP on my right side. I graduate college next semester. College has been tough. Very few friends, after high school my high school band friends stopped texting or calling. I get it, people move on, but even in high school I was lonely. I don’t have many friends now. I can reliably count 6, I know it is quality over quantity but still I do wish I had a few more. I am a furry, you know the people who dress up in the animal costumes that aren’t sports mascots....that’s us. Sophomore year of high school I made my own character. Through being a furry I have made a few friends. My advice to anyone reading this is this, you will make friends, it might take a while, but you will. You might be lonely. I still am. That will eventually pass.
Lived 31 years with this ailment and still counting. Have been ignorant, have been extra sensitive... Cried bitterly, laughed carelessly... Had my moments of falling beneath my anxiety, fears as well as rising above them... Ageing with CP can be depressing and difficult... You wake up a morning and realize that your legs can't bear the weight of your body anymore... And you literally crawl to the washroom... And by the night you end up running around the city alone and do all sorts of things... Wholesome it is.. Thanks for bringing this out of me sir... 👍
Good points made John. According to my c.p. specialist I'm one of a few of his patients that are articulate and functioning well enough for him to base his knowledge of c.p. and aging with. People born with c.p. before you and I ( I'm 52) were more disabled most of the time due to lack of knowledge by doctors on how to treat newborns. like you said we have to be the voice for those coming behind. I have a friend who is 60. she said her movement doctor (I don't remember what they call them) told her that our bodies age 3x the normal rate of those without c.p. That may just be a guess on his part.
I am turning 56 tomorrow. I agree with your video! I have had the same thoughts for 15 years. My Cp is mild, but the stress on my joints is starting to get hard to ignore. I see circulation issues in my leg and my doctor just said that it happens to people with neurological issues as they age, as ifIm just supposed to accept it. My thought is to investigate solutions. Let's keep me mobile into my 80's and beyond is my thinking.
I'm 26, I've been having increased numbness in my legs joint pain in my knees that support me and stiffness in my hips and having a harder time getting though the house
@@kelviannaepperson3677 I hope you are doing well. I'm 32 and my C.P is mild and if the condition didn't progress as I got older I wouldn't really care but it's frustrating me immensely at this point because my dominant leg is starting to seize up and I'm fatiguing quicker. Since my right leg was not affected from birth I'm mystified as to how it can tense up decades down the line, at first I thought it was purely the physiological stress of carrying so much weight over three plus decades, but there must be underlying neurological factors involved and not just physiological factors even when in comes to the right side of my body being gradually affected and not just the seemingly soley affected left side. So I have no idea why my right leg is being gradually affected in spite of the initial brain injury staying the same as that makes it seem as though however someone is affected from birth is how they remain for life, and yet my left and right arms remain unaffected to this day (I can understand my left leg experiencing increased tension as the years go by as that is my limb affected from birth or shortly thereafter; but I don't think anyone could or can ever give me an answer as to why my right leg is progressively being affected). If it were purely physiological then I could have one or two corrective surgeries on it and never have to think about it again. It seems as though people with C.P will inevitably experience at least two of their limbs being affected even if it initally appears as though only one limb is affected; which complicates things massively: There's no way I'm ever spending one day in a wheelchair, I'd much rather be dead than live that way. It's a cynical assesment but very true because I can only live to see myself lose so much function before I completely give up, and I've been on the verge of doing that for so long it's crazy, I never thought it would come to this. Stay as active as you can, you physiotherapy related stretches daily and try as best as you can to stay as positive as you can for as long as you can and if baclofen and botox are available to you it certainty helps. All the best!
@Enter the Bruce 91 the fatigue is getting worse and not I have a secondary condition small fiber neuropathy. Look out for any kind of nerve pain cuz it started when I was 11 but didn't get worse till 2 years ago. Now I'm pregnant and I'm so happy because for the longest I wasn't sure if I could have kids that I knew I wanted because of how bad my cp affects me when I was younger I had really bad depression I felt like no one needed me and I was a burden. I didn't know my purpose. But now I know that I have love to give so I will give love.
@@kelviannaepperson3677 It sounds like you have it a bit worse than me physically but I pray your child grows up healthy and strong-I'm sure they are an immeasurable blessing to you. Again, I wish you all the best.
I have mild hemiplegia left side spastic cerebral palsy, and scoliosis also mild form and inattentive ADHD. I am reaching my 57th birthday, I have some joint pain in knee from time to time, my hips I have some pain. I keep active, and do not let cerebral palsy get in my way. I go to the gym three days a week, but limit it to only 2 hours each time I go. As you say what is install for being in 60s and onward. I achieved a full motorcycle licence, and found that riding a motorcycle was helping my hips by taking the weight off my joints. A tip for you take up singing in a choir, it help with vocal and breathing. Best of all enjoy what you got, and don't ever let disability stop you.
Hey John great video, definitely an area that needs to be explored and something I've been thinking a lot more now I've turned 18/ almost 19. I believe that activity and 'preventative maintenance' is definitely key for us until it's researched more deeply. Keep up the awesome work dude and I'm so glad I'll have someone to talk to about this as I get older! :)
I noticed that as well here in Switzerland - that as an adult neurologists stop following the progression of adults with CP as soon as we turn 18. I am now 48 and over the last couple years I have noticed a decline in my gross motor skills.
i have spastic hemiplegia cerebral palsy. It affects my right arm more but I'm almost 30 and noticing other issues with aging. I have very mild Spastic Cerebral Palsy. Many people notice it but I worry that aging will limit my independence.
I appreciate all you represent brother,not only for us with cp but for anyone who thinks that anything is impossible,for all things through Christ are possible. Keep the faith and keep up the good work
I just turned 60 with level 1-2 CP. My CP went ignored mostly after my teens. I only recently discovered it has presented itself in spades in my 50's. I am only now doing research on adult CP as my body struggles with advanced aging.
Thanks for your note. Yes, aging with CP can be difficult. I've found that exercise that works my balance, such as yoga does help - also daily walks and low-impact things such as swimming do help. Best of luck!
I'm 40 with mild CP and my physical therapist at Mayo told me when I was 30 that they know very little about how I'll age and the best I could do was keep myself at a low weight and do my stretches so I didn't end up immobile. Its frustrating but understandable because not a lot of research is done about adults with CP.
Great points John! Have you ever asked your doctor about this? Maybe there is a resource out there we don't know about. Judging by my own TH-cam channel there is an interest from the CP community in the subject matter. My video "Growing Older with Cerebral Palsy" is one of my more popular videos. Again, nice job!
I am 56 yo and I agree: At 18 yo, it was like here you go - good-bye. There was nothing. I was having a lot of issues a few years ago, my hips and knees (osteoarthritis), I have a slight curvature in my back, so every once in a while it hurts if I do anything too strenuous. I, also, tire more easier, I ache a lot more than I had in the past, and I was falling a lot. A year ago, my family doctor referred me to a physical and rehabilitation specialist. Initially, he was going to prescribe fore-arm crutches, but he opted for a muscle relaxer instead. It's been good, but it's hard on the liver, so I do blood work once in a while.
Hi Bob, i`m having the same issues and it started in my late 20`s and now i`m 46 and sometime i feel alone with this because family and friends don`t understand and i was very active until I hit my middle 30s. i told as we get older we get something called post-impairment syndrome. i hope this help alittle bit.
Soon to be 53 here from St Louis, MO. CP Hemiplegic (right side). My condition is much like yours...mild enough its hard to notice, but severe enough to cause the early onset of orthopedic issues...especially since we are so active. Kind of a double edged sword if you ask me. However, I'll choose the active and in shape edge over the tight and spastic couch potato edge every time. I have lower back issues and ankle issues. I'm an avid cyclist in order to stay ahead of the dreaded spastic and tight CP curve. My biggest frustration with the medical world is doctors who specialize in adult CP also specialize in too many other conditions. The last one I saw didn't even know the term "mirrored (or mimicked) motion", which is so common for hemi's. Like you said...I feel alone sometimes. However, I just keep on keeping on with my bikes, my loaded plate machine, and my floor routine. Did I mention I absolutely hate crunches? ;-) Keep up the good work John. We can all relate!
Yep. The GCN crew are always promoting Wahoo and Zwift...something to add to my wish list. It would be great for these midwest winters and much less boring than a simple mag trainer and ear buds. ;-) As mentioned earlier...I've enjoyed all the videos. It's nice to know there's others in the boat. Keep it up.
As a 47 year old woman with CP I do feel there is a huge gap in knowledge and information on aging ( as evidenced by the fact I searched out "Aging and CP" on youtube!). Over the years I've kind of cobbled together the best of what I've read as a guidepost for what to expect but there is still so much unknown, and it requires intense effort and creativity to stay on top of what is happening to our bodies. I know the worst case scenarios, as long as I avoid those I think I can have a long and happy life. Currently I am working on getting myself in as great of shape as I can so I can stay as mobile as possible. I agree though, we need to be educating those coming up behind us on what we experience now so they have a framework to build on. The worst thing for me was not knowing what to expect, so knowledge really is power
Hi John I'm 56 years old with 95% effected CP use crutches. I'm having trouble with my feet. So much that I'm thinking about Heal cord lengthening my foot is turning more and more. I agree finding a surgeon that even has a clue about CP. I wonder if I got it done would it effect my hip do to decades of habit walking.
we need to be mentors for the yuonger generations behind us (43 birtday today with cp) because we are ossible the first generation that were raised at homeand not state care. The medical comuinty also needs to help us figure out how to live the healthiest most inedpant lives possible.
John, thanks for the videos. I totally agree with you. There needs to be more attention and awareness to the fact that children with cerebral palsy become adults, we need care by specific specialists just as children. More research needs to be done on the effects of our conditions over our lifetimes. Specifically the changes that occur physically with age. I am 24 years old with Spastic quad cp. but I can walk thankfully with the aid of my walker and after many surgeries. Makes me nervous about finding a specialist for my cp as an adult.
Dear John, I´ve just been watching a few of your videos and I find them very impressive. I was born with CP in 1966 and as you can see on my picture I was a Para- Triathlete for about 10 years and I`m still active as a long distance runner. I think that doing as much physical activities as you can is the Best to prevent jo from joint- degeneration problems, for example arthrosis. But this surely depents on ones individual way CP affects you. I live in Germany and our society here is not that much aware of cerebral palsy as people are in America or in the UK. So I will go on watching videos like yours to stay aware, how people with CP live.
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I am a 30 year old mother of 3 with spastic cerebral palsy. I cannot tell you how much I relate to what you have said in this video. I too would like to see some demographics. From my 20's to my 30's felt like I aged forty years. All of the doctors I can find that specialize in CP are pediatric doctors. It is incredibly frustrating. I feel weary of what to expect as I age. I would love to know other adults. I would love some data on aging with CP, and what to expect.
imoen00 I feel exactly the same way that there is not a lot of info for adults and the recommended therapy.
People don't realize it becomes worse when you get older. Because it exasperates the aging process. I'm going on 47 and have mild cerebral palsy. Yes kids with C.P. grow up to be adults with C.P.
I am 68 years old born with CP have 2 sons one is deceased one granddaughter worked 25 years in food and retail It has not been easy life but still here has many other health problems wish there was a study for people over 60 with CP
almost 19 with cp. it sure is a lonely feelin.
It can be scary and daunting wondering how it will be for me in future years with my Cerebral Palsy. I'm 42 and it has gotten a bit more difficult getting around. All I can do try to keep strong both mentally and physically.
I have CP. I am 61. Turning 62 in October. I don't know of any doctors in my area who treat adults with CP. When I was 58, I learned how to ski. I was active until 2 falls put me in a motorized wheelchair.
I am 39 I have it also it sucks
I can relate to what you are saying I have Cp I’m 43 I was able to be much more active when I was younger but as I have aged the stress on my joints and spine have cause arthritis and I’m now a power chair user, you are so right that Cp is seen as something only effecting children, hardly ever see anyone in there 40s 50s 60s 70s we don’t just cease to exist after 18 years of age.
I'm 37 years old and I have Cerebral Palsy
Thank you
Thank you so much for your videos and thoughts and information you are a inspiration
I see from your video and other comments that heaps of people with cerebral palsy are experiencing the same problems with health care
I’m now 41 with cerebral palsy untreated for about 32 years and am no longer invincible 😂
The last dr senior rehab specialist i saw dr Craig Davenport said to me just because he isn’t very tall it doesn’t mean he is disabled 😅
The medical system for me In NSW Australia has been really really bad
I have come to the conclusion that cerebral palsy is a field of medicine that few are interested and even less are trained to treat
It’s sad but it is what it is
To everyone that reads this hang in there and make all the cerebral palsy people heard of and understood
I’m trying really hard but not having much success ❤
Thanks so much, Daniel! I appreciate your thoughts. Cheers from Tucson, Arizona!
I have mild CP and when I turned 50 notice my Balance worsing. I am tripping more as I age, carpeted places are worse. I have a LOT more falls two. I.have ALWAYS had mild balance issues....with stairs or just one step. But now have trouble picking up my feet as I age .
Hello! You're not alone, I'm 53 as well, lol. To be honest, my future scares me.
My mum is turning 62 and she has cerebral palsy quite bad and ataxia she was married for 40 years till my dad died and also had 3 kids which is really good she enjoys life and has loads off friends and life left in her 💯❤️ keep up the good work
My mom is 86 yrs with Right side hemiplegia. She has 10 % use of her right hand. She broke her "good" side collar bone as a child and wrist when she was around 60. This has left her with about 50% range of motion with her left arm. She started using a walker at age 80, "reluctantly", mostly to keep me from hassling her about using it! I say that because my mother is one of the strongest people I know. She has never been on disability and worked until I was born. Married and raised two children. She has had bilateral hip replacements because of osteoarthritis, which really affects her back, neck and knees. The spasticity has really increased in her right leg.She cannot weight bear much on that side mostly because of the pain. She gets out of her chair every one to two hours to walk the floors because she knows she must keep mobile. I drive her three days a week to card clubs to socialize. I have never seen anyone my mom's age still ambulating like she does. She needs help with a lot of things in the last few years, and she now lives with me. Perseverance and determination are a HUGE part part of maintaining mobility in the elderly!
Hi Debbie! Your mom is amazing! Please give her my very best - and thanks so much for the note!
I am 23, I use a mobility scooter for long distances because my knee, hip, and lower back spasm really bad. My CP is spastic CP on my right side.
I graduate college next semester. College has been tough. Very few friends, after high school my high school band friends stopped texting or calling. I get it, people move on, but even in high school I was lonely.
I don’t have many friends now. I can reliably count 6, I know it is quality over quantity but still I do wish I had a few more.
I am a furry, you know the people who dress up in the animal costumes that aren’t sports mascots....that’s us. Sophomore year of high school I made my own character. Through being a furry I have made a few friends.
My advice to anyone reading this is this, you will make friends, it might take a while, but you will. You might be lonely. I still am. That will eventually pass.
Hello John I'm 65 now and you're right when you turn 18.
You because invisible to the medical community 😢
Lived 31 years with this ailment and still counting. Have been ignorant, have been extra sensitive... Cried bitterly, laughed carelessly... Had my moments of falling beneath my anxiety, fears as well as rising above them... Ageing with CP can be depressing and difficult... You wake up a morning and realize that your legs can't bear the weight of your body anymore... And you literally crawl to the washroom... And by the night you end up running around the city alone and do all sorts of things... Wholesome it is.. Thanks for bringing this out of me sir... 👍
Good points made John. According to my c.p. specialist I'm one of a few of his patients that are articulate and functioning well enough for him to base his knowledge of c.p. and aging with. People born with c.p. before you and I ( I'm 52) were more disabled most of the time due to lack of knowledge by doctors on how to treat newborns. like you said we have to be the voice for those coming behind. I have a friend who is 60. she said her movement doctor (I don't remember what they call them) told her that our bodies age 3x the normal rate of those without c.p. That may just be a guess on his part.
I am turning 56 tomorrow. I agree with your video! I have had the same thoughts for 15 years. My Cp is mild, but the stress on my joints is starting to get hard to ignore. I see circulation issues in my leg and my doctor just said that it happens to people with neurological issues as they age, as ifIm just supposed to accept it. My thought is to investigate solutions. Let's keep me mobile into my 80's and beyond is my thinking.
Happy Birthday Margaretann and thanks for your note! Here's to staying mobile for the rest of our lives!
I'm 26, I've been having increased numbness in my legs joint pain in my knees that support me and stiffness in my hips and having a harder time getting though the house
@@kelviannaepperson3677 I hope you are doing well. I'm 32 and my C.P is mild and if the condition didn't progress as I got older I wouldn't really care but it's frustrating me immensely at this point because my dominant leg is starting to seize up and I'm fatiguing quicker. Since my right leg was not affected from birth I'm mystified as to how it can tense up decades down the line, at first I thought it was purely the physiological stress of carrying so much weight over three plus decades, but there must be underlying neurological factors involved and not just physiological factors even when in comes to the right side of my body being gradually affected and not just the seemingly soley affected left side. So I have no idea why my right leg is being gradually affected in spite of the initial brain injury staying the same as that makes it seem as though however someone is affected from birth is how they remain for life, and yet my left and right arms remain unaffected to this day (I can understand my left leg experiencing increased tension as the years go by as that is my limb affected from birth or shortly thereafter; but I don't think anyone could or can ever give me an answer as to why my right leg is progressively being affected). If it were purely physiological then I could have one or two corrective surgeries on it and never have to think about it again. It seems as though people with C.P will inevitably experience at least two of their limbs being affected even if it initally appears as though only one limb is affected; which complicates things massively: There's no way I'm ever spending one day in a wheelchair, I'd much rather be dead than live that way. It's a cynical assesment but very true because I can only live to see myself lose so much function before I completely give up, and I've been on the verge of doing that for so long it's crazy, I never thought it would come to this. Stay as active as you can, you physiotherapy related stretches daily and try as best as you can to stay as positive as you can for as long as you can and if baclofen and botox are available to you it certainty helps. All the best!
@Enter the Bruce 91 the fatigue is getting worse and not I have a secondary condition small fiber neuropathy. Look out for any kind of nerve pain cuz it started when I was 11 but didn't get worse till 2 years ago. Now I'm pregnant and I'm so happy because for the longest I wasn't sure if I could have kids that I knew I wanted because of how bad my cp affects me when I was younger I had really bad depression I felt like no one needed me and I was a burden. I didn't know my purpose. But now I know that I have love to give so I will give love.
@@kelviannaepperson3677 It sounds like you have it a bit worse than me physically but I pray your child grows up healthy and strong-I'm sure they are an immeasurable blessing to you. Again, I wish you all the best.
I have mild hemiplegia left side spastic cerebral palsy, and scoliosis also mild form and inattentive ADHD. I am reaching my 57th birthday, I have some joint pain in knee from time to time, my hips I have some pain. I keep active, and do not let cerebral palsy get in my way. I go to the gym three days a week, but limit it to only 2 hours each time I go. As you say what is install for being in 60s and onward. I achieved a full motorcycle licence, and found that riding a motorcycle was helping my hips by taking the weight off my joints. A tip for you take up singing in a choir, it help with vocal and breathing. Best of all enjoy what you got, and don't ever let disability stop you.
Well said, Sir! Keep charging! Continued success to you - John
Hey John great video, definitely an area that needs to be explored and something I've been thinking a lot more now I've turned 18/ almost 19. I believe that activity and 'preventative maintenance' is definitely key for us until it's researched more deeply. Keep up the awesome work dude and I'm so glad I'll have someone to talk to about this as I get older! :)
I noticed that as well here in Switzerland - that as an adult neurologists stop following the progression of adults with CP as soon as we turn 18. I am now 48 and over the last couple years I have noticed a decline in my gross motor skills.
i have spastic hemiplegia cerebral palsy. It affects my right arm more but I'm almost 30 and noticing other issues with aging. I have very mild Spastic Cerebral Palsy. Many people notice it but I worry that aging will limit my independence.
Thanks for your note, Keristen.
I am a man in my 50s with CP..I want to do a video too
I appreciate all you represent brother,not only for us with cp but for anyone who thinks that anything is impossible,for all things through Christ are possible. Keep the faith and keep up the good work
I just turned 60 with level 1-2 CP. My CP went ignored mostly after my teens. I only recently discovered it has presented itself in spades in my 50's. I am only now doing research on adult CP as my body struggles with advanced aging.
Thanks for your note. Yes, aging with CP can be difficult. I've found that exercise that works my balance, such as yoga does help - also daily walks and low-impact things such as swimming do help. Best of luck!
I'm 40 with mild CP and my physical therapist at Mayo told me when I was 30 that they know very little about how I'll age and the best I could do was keep myself at a low weight and do my stretches so I didn't end up immobile. Its frustrating but understandable because not a lot of research is done about adults with CP.
Its frustrating for sure! Stay strong - I hope you get the chance to read or listen to my book - Someone Like Me. Thank you!
Great points John! Have you ever asked your doctor about this? Maybe there is a resource out there we don't know about. Judging by my own TH-cam channel there is an interest from the CP community in the subject matter. My video "Growing Older with Cerebral Palsy" is one of my more popular videos. Again, nice job!
I’m 51
I'm 42 with cerebral paulsy
I am 56 yo and I agree: At 18 yo, it was like here you go - good-bye. There was nothing.
I was having a lot of issues a few years ago, my hips and knees (osteoarthritis), I have a slight curvature in my back, so every once in a while it hurts if I do anything too strenuous. I, also, tire more easier, I ache a lot more than I had in the past, and I was falling a lot.
A year ago, my family doctor referred me to a physical and rehabilitation specialist. Initially, he was going to prescribe fore-arm crutches, but he opted for a muscle relaxer instead. It's been good, but it's hard on the liver, so I do blood work once in a while.
Hi Bob, i`m having the same issues and it started in my late 20`s and now i`m 46 and sometime i feel alone with this because family and friends don`t understand and i was very active until I hit my middle 30s. i told as we get older we get something called post-impairment syndrome. i hope this help alittle bit.
Soon to be 53 here from St Louis, MO. CP Hemiplegic (right side). My condition is much like yours...mild enough its hard to notice, but severe enough to cause the early onset of orthopedic issues...especially since we are so active. Kind of a double edged sword if you ask me. However, I'll choose the active and in shape edge over the tight and spastic couch potato edge every time. I have lower back issues and ankle issues. I'm an avid cyclist in order to stay ahead of the dreaded spastic and tight CP curve. My biggest frustration with the medical world is doctors who specialize in adult CP also specialize in too many other conditions. The last one I saw didn't even know the term "mirrored (or mimicked) motion", which is so common for hemi's. Like you said...I feel alone sometimes. However, I just keep on keeping on with my bikes, my loaded plate machine, and my floor routine. Did I mention I absolutely hate crunches? ;-) Keep up the good work John. We can all relate!
I'm a big advocate of indoor cycling, Charlie. Love having my bike on my Wahoo Kickr and riding on Zwift! Thanks for the note!
Yep. The GCN crew are always promoting Wahoo and Zwift...something to add to my wish list. It would be great for these midwest winters and much less boring than a simple mag trainer and ear buds. ;-) As mentioned earlier...I've enjoyed all the videos. It's nice to know there's others in the boat. Keep it up.
@@justpedal65 Will do, Charlie - thank you.
As a 47 year old woman with CP I do feel there is a huge gap in knowledge and information on aging ( as evidenced by the fact I searched out "Aging and CP" on youtube!). Over the years I've kind of cobbled together the best of what I've read as a guidepost for what to expect but there is still so much unknown, and it requires intense effort and creativity to stay on top of what is happening to our bodies. I know the worst case scenarios, as long as I avoid those I think I can have a long and happy life. Currently I am working on getting myself in as great of shape as I can so I can stay as mobile as possible. I agree though, we need to be educating those coming up behind us on what we experience now so they have a framework to build on. The worst thing for me was not knowing what to expect, so knowledge really is power
Hi John I'm 56 years old with 95% effected CP use crutches. I'm having trouble with my feet. So much that I'm thinking about Heal cord lengthening my foot is turning more and more. I agree finding a surgeon that even has a clue about CP. I wonder if I got it done would it effect my hip do to decades of habit walking.
I am 35 and I have spastic hempligic cerebral palsy
we need to be mentors for the yuonger generations behind us (43 birtday today with cp) because we are ossible the first generation that were raised at homeand not state care. The medical comuinty also needs to help us figure out how to live the healthiest most inedpant lives possible.
I have had it all my life. I am twenty-six now and am wondering how it will effect me long term.
As a 47 year old guy with CP I want to say thanks for this video.
Great video
Learnt a lot
John, thanks for the videos. I totally agree with you. There needs to be more attention and awareness to the fact that children with cerebral palsy become adults, we need care by specific specialists just as children. More research needs to be done on the effects of our conditions over our lifetimes. Specifically the changes that occur physically with age. I am 24 years old with Spastic quad cp. but I can walk thankfully with the aid of my walker and after many surgeries. Makes me nervous about finding a specialist for my cp as an adult.
Thanks, Stephanie! I appreciate your thoughts! Be well.
I well be 60 in april with cp
Very very true. Thank you. I'm 23. And i always wonder how it might play out ( mild spastic lower limbs cp )
Thanks so much
Thanks for your note, Elizabeth. Hope all is well. If you get the chance, I hope you'll read or listen to Someone Like Me.
@@authorjohnwquinn id be happy to! All the best!
Im 34
Dear John, I´ve just been watching a few of your videos and I find them very impressive. I was born with CP in 1966 and as you can see on my picture I was a Para- Triathlete for about 10 years and I`m still active as a long distance runner. I think that doing as much physical activities as you can is the Best to prevent jo from joint- degeneration problems, for example arthrosis. But this surely depents on ones individual way CP affects you. I live in Germany and our society here is not that much aware of cerebral palsy as people are in America or in the UK. So I will go on watching videos like yours to stay aware, how people with CP live.
Thanks, Markus! All the best!
:-)