I Finally Saw A Neurologist | Aging With Cerebral Palsy 

Mark your calendars! Cerebral Palsy Awareness Day is March 25th! Make sure to wear GREEN to support!

I'm 20 and i have diplegic spastic CP like you. This information is so helpful because I don't have role models in my life that know how it is. 💕💕💕

As a 55-year-old woman with cerebral palsy in my own case I am blessed to say I I also heard that Cerebral palsy is not progressive so I thought I would be in this degree of physicality all my life until I get older. I never thought 55 was going to be my turning point to wondering how I'm going to age with this disease. Good for you for taking your health into your hands and finding a neurologist keep us posted on your progress Good luck!

My niece lost her husband and right leg above the knee in car accident. I first sent her Footless Jo and Annika the Marine videos, but now you too. You are an inspiration. Improvise, adapt, overcome.

My wife had release surgery done at Stanford Medical Center in the 1960s. It gave her greater mobility and of course, she had to attend many medical conferences with her surgeons to show off the great results. She went on to have two wonderful children and pursued a great career in computer science working for multi-national corporations.

Thank you for sharing your experience. Finally, someone talking about this aging with cerebral palsy. I am 54 years old and it getting more and more difficult to walk without pain. My neurologist tells me wear and tear because of the way I walk and my tight muscles. My muscles are tight unfortunately this has caused nerve damage and know I have burning pain down my legs and in my hands. Not fun! I too on the same muscle relaxers for many years. Please keep your posts coming 😊.

Your strength makes us all stronger. Thank you 🙂

I relate so much to your story! CP here..our gait is so similar and I’ve started using a walker within the last few years because I was falling and injuring myself SO much and the pure anxiety I felt at the thought of going anywhere was just overwhelming. It is definitely an added level of security, but falls still happen. Like you I’ve done PT/OT my whole life but did dip on it for a while in my twenties in college.😅 I’m 33 now and try to make sure I go once or twice most weeks otherwise my pain that has increased noticeably in the last five years gets WAY worse. I also took baclofen as a kid and decided to stop. I have a script for it again now as an adult, just haven’t committed to taking it continuously yet. I can definitely see a need for it now, though. We are definitely in the same boat…the neck pain you’re describing has been a new pain to me, too. I attribute some of it to overuse of that muscle from using the walker more 🤷🏻‍♀️ and the rest of it to wear and tear lol

I’m 38, with CP. love your videos.

I'm 65 now and ive notice things i have more problems with now. I used to dance for exercise now because of my balance I don't dance anymore 😢 I too walker with a walker now I have bladder control issues too i talked to a nurse who said it's part of CP. And the young lady is right once you are passed 18 years old. You are kinda on your own 😢

I'm not sure if someone else is recording you or the camera is just on autopilot. It seems to be doing some weird things. Moving, zooming both in and out. It's always nice to watch you sharing your experiences. The word that comes to mind when watching you is generosity. You so freely give your time, energy and information in the hopes of helping others.

Much love for Chelsey for her dedication in giving so much education and love to others.

I have CP. I am 57. I was fairly athletic despite my CP when I was younger. I noticed when I hit 30 I was more likely to have issues with stairs and high curbs. As I hit my 50's I do have knee, hip and back issues due to the way that I walk. I do use a wheelchair occasionally and I use a cane about 85% of the time when I walk. I try not to let it stop me. My job is a home health care provider for a quadriplegic. I also play guitar and sing in a local rock band. I use a specialized guitar chair I use on stage so I can stand leaning on the chair and when I feel I need to sit I can.

Thanks for sharing your experiences Chelsea, I am going thru the same stuff. I have CP for 50 years now and have been also experiencing the same kind of problems as you. Stay positive

I had polio at 14 months, I am now 73. You must watch your therapist, because some will hurt you, because not all know how to handle your condition. I have a wonderful orthopedic doctor. I wear a long leg brace on my left leg. But nothing on my right. I had knee replacement on my right leg years ago. My leg turned inward at the knee,as yours does. When my dr did my surgery he was able to make that leg straight. Maybe that is a possibility for you one day . I am glad you are using a walker to help you get around. I use walker, scooter and cane as needed. Good luck and God bless

I love that are making people aware about cp your great❤

Thank you for sharing your CP Story ❤❤

It's MS awareness month too.Growing older isn't easy!Your videos are great!Going to the neurologist & in mri machines is difficult but necessary!❤

Be CAREful on what one you are given. I've had one that knocked me out for HOURS. I did type CARE because you are such a CARING person and I would love to meet you one day.

No one else would know more precious lady ❤

Thank you Chelsea you are an inspiration to us all never stop moving God bless you and your family 🙏😘✌️ PostScript you are an angel on this Earth the way you help people by telling us all of your experiences with cerebral palsy ✌️

Chelsea, as a woman with CP I want to thank you for the information you share. After seeing your stretch video on Instagram, I took the initiative to find a place like that in my area because I know as I enter my 30’s, which will be in a few months, I need to make sure I’m doing things that will help me improve my fitness. So, I signed up for a membership and after only the first session I saw results. I’m working with someone who is very patient and thorough in making sure I get the most out of the sessions. There is also someone there who has experience working with someone with CP, and I plan to work with her as well. I can relate to you a lot and it is nice to see someone in my age group sharing their experience of living with CP.

I have CP as well thanks to your channel I have learned a lot and how to adapt certain things to help me with my CP you are a big inspiration keep up the awesome work

Thanks for the information Ms. Chelsea Bear. You are an inspiration to everybody. Keep up the amazing work that you do. Just be yourself and have fun doing what you do and want to do. Have a good one and a great week to you Ms. Chelsea Bear

I’m glad you’re feeling more comfortable using your walker. I wasn’t sure what to say when you were experiencing the anxiety because I’ve never had to use a walker but I’m glad that you’re having a better time with it right now. Kudos.

Physiatrists are also neuromusculoskeletal specialists that can be helpful in CP. Sometimes also looking for specialists who advertise as specialists in "PM&R" can get you to someone with the right kind of training.

Sorry to hear about the panic attacks. That must have been really hard. Glad the walker is working out for you Chelsea.

I am. 36 with mild cerebral palsy I live in Texas thanks for inspiring me

Awesome video . You are very strong. Have a great day , God Bless . Mike 😊

I'm 57 with hemiplegia CP in my right side. It's very mild and as an active athlete, I'm constantly exercising and doing PT. One thing I've noticed, because of the mirrored or mimicked motion most hemi's experience, is arthritis creeping into my good left side. I believe this is due to me trying to keep my left side still, while exercising my CP affected right side. Keeping my left side totally still, as most able-bodied persons can, is utterly impossible. Even when I sit on my left hand to do PT with my right hand and fingers, my left forearm muscles will still move. It makes total sense this constant push and pull would cause early arthritis in my left side. Regardless of these "side effects", like you, I'd rather go out with my boots on than curl up in the corner. Concerning Baclofen, I take 10mg at bedtime because my spasms happen at night. Given this, I still have to get up and do some yoga poses and stretching once in a while, but overall, I think it helps.

Thanks so much for this video as a 40 something. I have been looking for information on aging with cp, and I was wondering if it's the cp or just getting old, lol

Thank you for the video and for being open with us.

Love your stuff, Chelsea. You're an inspiration to a LOT of people!

Thank you so much for posting this with so much honesty! As someone nearing my 30s with CP its so helpful to have someone kind of thinking through the things that I've been thinking of..I haven't even thought of going to a neurologist but now am considering 😊 As OT I am horrified by that experience you had with that PT I'm so sorry.

Chelsea, I always enjoy your videos :). This topic has been on my mind for the last several years and I have looked every where on the internet and not much is there as you age with CP. I also have CP as well. I have mild spastic CP and I am 51 years old. I know each person with CP is different. My understanding from all my doctors, physical therapist and others that strength training exercises, relaxing the muscles and eating healthy is the key. I am work in progress in this area...LOL. I did the Cerebral Palsy Step 10K Challenge back in September last year from September 1st to November 15th because I was concerned about aging with CP. I did this challenge successful. I know many with CP are not able to do this successfully. The bad part is that I have not gone back to exercising since November. I know I need to get back in exercising regularly again. The last four years I have been physical therapy twice for right leg and hip muscle. So far I do not have arthritis :). Again, Chelsea I am proud of you on working on your health and I am glad you brought up this topic.

I'm glad you are working hard to manage your CP. Currently 34 with it as well, and unfortunately, my scoliosis returned a few years ago. It does hurt me quite a bit, but I have not had the ability to visit any doctors for some time. But I'm glad you talked about CP. Not allot people talk about or afraid to. Major champion thumbs up, keep it up

Glad you are taking care of yourself. ❤

Thank you for bringing attention to aging with CP. I related to everything you said. Having CP at 10 is much different than 30. Yes, the injury doesn't change, but the presentation of it does. I have spastic hemiplegia. I had another MRI at 30 which I found informative. I could never stick to baclofen. A PM&R doctor administering botox has helped me. It was trial and error to find the exact areas with the most benefit. Botox in my pec has been a game changer. I have had my fair share of nightmare experiences with sports PTs too! Seeing neurological PTs and OTs who specialize in stroke rehab has been beneficial to me as an adult. I hope sharing what has helped me as I age can help you. Thanks again for sharing your experience.

I don't have cp but have had a stroke... i still watch you for fact finding and inspiration.... im getting less spasticity but can really relate.... i have ot 2 to 3 times a week but seem to be have hit a brick wall.😢

Bless your heart,you really amaze me with you will to not give up! Prayers this helps you❤

I have spastic hemiplegia. When I was a teenager, my doctor prescribed Botox shots which I did couple of times for my arm/bicep. It did help, but since I was a teenager, I didn’t keep up with the necessary exercises, so it wore off. What’s really been helping me now is the regular gym exercises I do. It’s still spastic sometimes, but the majority of the time, my arm/bicep area definitely feel more relaxed

I feel like this winter time has affected my cerebral palsy worse that he is ever. I have been working with my sister in in law with cp. she has been giving excerises to do. I already been feeling a difference. I have been doing all the excerises twice a day once in the morning and them in the afternoon plus riding a sit less bike for 30 minutes twice a day. I do it every day except the day I see her and when I go to work.

will be 50 in 5 months, also have cp and do normal things like other guys do. walk with the aid of crutches, they are currently behind me on floor so i can grab and go. i have the most caring support people in my life. i also am a new uncle, my sisters step son. we play ball, and camp. and just kind of hangout. also went to neurologist who told me i didnt need him. thought my shunt was going cause my feet are swollen but i still do things. you keep up the good fight.

My Cerabral Palsy mainly affects my legs but as I have gotten older it's been affecting my upper body even more. I am 30 and in the last year I have been having burning and numbness down my arms and hands. I work part time and feel it's making work much harder.

Hi Chelsea! 43 with spastic diplegia here, and you are definitely not alone in your experiences. PM&R might be able to help you as well, at least they were more familiar with CP than the neuro I saw. As far as PT, yep, I started going back for various issues around age 30 (having not been since I was a kid), and they don't really know what to do with me either. It's all about measuring functional improvement for them. I don't expect to improve anymore at this point--just decline more slowly! And they (PTs) don't like that because it doesn't reflect well on their data and numbers! (That's my theory anyway, after having seen five different ones as an adult, and answering the same questions on the tablet every couple weeks.) I really like osteopathic manipulation; it's kinda like massage therapy, but a little stronger. I went once a month for a while, but it's really not enough to make a difference in the way I feel, unfortunately. I do recommend guided body scan meditations, though! Mostly because they are free! =) Having someone talk you through being aware of each body part is surprisingly helpful. Lots of people with CP find epsom salt baths and CBD really helpful as well, but I've never noticed a difference with them. Happy CP Awareness Day!

I'm 42 w/ S.D. cerebral palsy. I first saw a neurologist at the age of 14. That wasn't necessarily c p related, but I passed out in school. I have a shunt in my head.That was put there shortly after birth to drain the fluid on my brain. So I went to make sure that there wasn't anything wrong with that. The second time was a few years ago for the same thing. Everything turned out to be fine with that. I did find out some things about my c p that I didn't know. I have. A startled reflex... Which means I jump easily. I also have uncontrolled neck movements... I really didn't think much of it, but the neurologists confirmed that those were most likely due to CP.

Wishing you the best,sweetie❤

We love you Chelsea!

my 16 year son suffering with cerebral palsy

In reading the comments here it appears that you’re an inspiration to many…including myself. 👍👍

Hope everything went well with your appointment. I have to see a neurologist soon about my severe migraines.

You GO GIRL!!!!!! 💪💪💪💪

You seem to have a good neurologist, which is awesome! I’m so sorry you went through a bad experience with a physical therapist. I get they probably didn’t have experience with people with CP but to say that you should never walk again was way out of line! I hope you find a good one. I’d ask your GP first a recommendation or if there’s a facebook group for people with CP in Tampa, ask there. Please keep us updated! 🙂

Hi Chelsea, due a deep dive into F M Alexander and Feldencrist work. See if you can have both individual and floor classes(Feldenchrist- awareness threw movement) Trully experiences that will give you some of the change u r seeking and so deserve. If you sorce a trully giffted PT with CP experience

I've taken muscle relaxers and i did notice a difference. I have fibromyalgia on top of CP and my muscles pull on things and i have flareups that made it hard to sleep. I took them at night and they put me out for 12 hours, but i felt much better during the day. I've had to stop because they reacted with my other medication, but i did notice a big change.

I really wish there was more research for us CP adults. I’ve been through similar issues with anxiety. As far as PT they just blew me off saying they don’t know what to do and gave me exercises and OT they were going to work on with me with cooking skills. Luckily I don’t deal with pain but I do deal with tightness. I took baclefon didn’t work for me. I’m on diazepam for spasticity and for anxiety I’m on lexapro and I think it’s been helping. I also get Botox in my legs for tightness. Looking forward to next video.

Hi Chelsea, thank you for making this video! I am in my mid 20s and I actually started getting chronic pain in my mid to late teens! I have spastic diplegia and I have a similar level of mobility to you, except, I have never been able to walk unaided. I use the same type of walker to you, but I also use a wheelchair. The last few years, I have had to use my wheelchair more because I don't have the stamina I used to. I actually had a flare up of my spasticity in my legs almost immediately after foot and ankle surgery a few years ago, that resulted in a huge decline in my mobility, and unfortunately, despite doing weekly physio for the last 3 years, I have lost about 75% of my mobility. I tried the muscle relaxant for about 12 months to see if it would help, because I was getting chronic pain in my neck, shoulders and legs, including the ankle that was operated on and it was almost impossible to walk because of the tight muscles in my legs. The baclofen helped for about the first 6 months, after that it started losing it's affect, and the side effects were terrible. I ended up stopping Baclofen and started getting Botox to target the specific muscles in my legs that are giving me grief. So far, I have seen results and my spasticity is a lot less, however, I haven't got my stamina back yet. As a result of the decrease in mobility I have experienced in the last few years, I started using my wheelchair more. I found out earlier this year that this was the main cause of my chronic neck and shoulder pain, after trying to get it investigated for almost 3 years. The pain has also not been helped by the way I put weight through my arms when I walk, so please be careful with how much weight you put through your hands when using your walker. I now also have pain in my wrists because I have mild spasticity in my hands due to my CP, which wasn't investigated or treated properly until last year - I literally went my whole life with mild spasticity in my upper body without knowing and now, I have an overuse injury in both my wrists! I also have neck and shoulder issues too.😒 Another specialist you should see is a Rehabilitation Physician (this is what they're called in Australia. I think they're as Physical Medicine and Rehabilitation Doctors). They treat and manage disorders that affect movement, including management of pain that comes with it. You can find some Rehabilitation doctors that specifically specialise in treating spasticity and CP. I live in Australia and a see a Rehabilitation Doctor who gives me the Botox injections in my legs every three months. I know Botox is very expensive, but it also has less side affects than oral musle relaxants and in my case, has been more effective at treating my spasticity. I know health care in the US is very different to health care over here in Australia. I am lucky to get my Botox heavily subsidised through the public health care system, but there is still a fair amount of out of pocket cost that I have to pay. I don't know how health care in the United States works, but maybe you could get your insurance to cover Botox treatment for your spasticity?

I found this video really helpful thanks! Would you be able to do a video on mental health and coming to terms with CP? As a 21-year-old with CP I'm struggling to come to terms with it, especially now as an adult

You are beautiful and amazing and so strong, stay positive and keep kicking butt ❤️

I can completely relate with the as you get older thing the resources go away, which is strange because CP is a lifetime illness lifetime disability excuse me, not illness. We have to deal with this for the rest of our lives doesn’t matter and if anything, it’s more important as we get older, to have more resources I’m not I can relate with the physical therapist thing. A lot of them have no knowledge at all about disability. It’s more dealing with sports injuries and people recovering from strokes which that’s a completely different thing. Great video as always beautiful beautiful lady.

Baclofen has helped me a lot with cerebral palsy. I’ve had to take it starting in my mid twenties and I’m 33 now. Also another besides what you said that helped is getting Botox to relax my muscles. I’d be glad to chat more since we’re close in age born with spastic cp

I have high functioning autism. I agree with you that there are no resources past 22. Especially for getting employment.

I'm a firm believer in chiropactic care, and deep tissue massages.😊 Really enjoy the information you share. Especially, your trips and excursions you go on. Your beautiful smile, when you're sharing the experiences brightens my day, as well.

I was diagnosed with cerebral palsy when I was only a year old in the doctor called it progressive falling

Chelsea: great content always love watching your RU-vid channel. This past Sunday on PBS Call The Midwife. Rosie Jones, who is a comedian with cerebral palsy, played a pregnant woman on the show. It was touching and eye-opening. I would love for you to see it. It was it first show of the new season 13.

Chelsea, you are fantastic. You are courageous to take this onfull steam. I was unaware that there was no continuing studies for CP. That is unbelievable. I would think some Dr. would see the glaring discrepancy in this and would want to help document this. Perhaps you and your neurologist could get the CP community to pressure our useless politicians to allocate funds to study these cases. You are an amazing, courageous young lady. You certainly seem perfect to undertake this task, with your personality and drive. Thank you, sweetheart, for putting yourself, and your life out there for everyone to see. That cannot be easy, but I'm not sure anyone understands just how much you help folks. If there is a national spokesperson for the CP community, you should be in that position. God bless you young lady for all that you do. Please be safe out on your journeys. ❤👍👍

Very informative talk. GO Lightning

If you're consistently taking baclofen, be *very* careful if you stop taking it one day or miss a dose, as its withdrawal symptoms can be difficult. Check out the associated wikipedia article for baclofen; specifically, look at the 'Withdrawal syndrome' section. Also, it would be helpful if you made a video about your general process of how you about finding a suitable physical therapist, neurologist, or other healthcare professional.

We all grow older friend 😊😎

I find this to be very informative. I myself have cerebral palsy since birth. I am 62 years old and I am also on the same muscle relaxer. Keep up the good work and remember the therapy is very important, occupational and physical therapy. It may not get any worse, but if you do not do anything it will not improve, and the arthritis is a problem with me too. I live in Miami. Please feel free to reach out to me.

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The winter months are not pleasant. My body doesn't like the cold! I have to keep my body warm. When pain sets in , i use a hot pack on my muscles, plus, i use meds.

So true!!! There's virtually nill for adults let alone sr citizens like me at 61.

I currently have a prescription for baclofen for menstrual cramps, it does wonders. My husband has CP and also uses baclofen - he says it just makes everything a little bit looser. But he takes it as needed or on trips when he knows he’ll be walking a lot. It might be helpful to try first thing in the morning?

Is Botox used to help relax muscles in your age group. I know children with CP have found some success and relief of tense muscles with this treatment. Thanks for sharing your journey ❤️❤️❤️

I was the same, but the second half of my 30's seems to have been a time when a lot of health stuff (CP and otherwise) really started to ramp up on me.

its in my diary x

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How does everyone feel about thc and cdb as a treatment for the spastic tightness? I have found it works well for me for a short trem relief. Im in Canada so its legal here

Hi I have cerebral palsy spastic dysplasia I’m 45 and I think people should know that your muscles and your nerves change as you age with cerebral palsy a lot quicker than with someone who doesn’t have it and I was born with it I know you two trail sticks instead of my walker or use my cane it depend on day.

My fiancee is just turned 56, she has c.p., just her legs are effected only, she was spastic diplegia, but she had s.d.r. a month before her 51st bday, & she is no longer spastic, she walks with crutches, for awhile she was the oldest in the world to have s.d.r., but recently someone older had it done, I'ma year older than her, we,ve only been together for 6 years,s, but I've herd her tell me a lot that she,s been thru, & I've seen the last 6 years what she,s dealt with, so,s there,s a lot coming @ you as you age, I went to high school with a guy 2 years behind me (small rural town middle America) & he had c.p. also, we still keep in touch, he just recently a couple months ago left the country & went to the Philippines, he likes it, he,s staying @ moment, but anyway,s, if,n you need info up to your 50,s, you can reach out to us.

is the arthritis something that happens from the CP and walking or just something that your body decided to ass on?

I don't know much about muscle relaxers but it seems like they would help you❤ I hope they help you tight muscles can hurt😢 you always look so pretty and happy❤ I enjoyed this video ❤️ see you in the next one❤😊❤ I hope you find the perfect physical therapist❤ he sounded like a jerk😢

Omg!! Muscle relaxers. That's why I ended up in Special Education. Give a 7yo a muscle relaxers right before lunch and recess.. the adults never figured why I slept in class. I figured it out later. All that said maybe muscle relaxers before bed and stay at home days to give your body a tine to rejuvenate?

What was the name of that medicine

Chelsea? Have they spoke about knee replacement?

My CP, or more specificly my ability to walk, was always worse than what I saw in your videos. I could walk with aids until i was around 17 Years. It had a very bad impact on my knees. So once I moved out from my parents home, I stopped walking. I feel like my muscular problems... like high muscular tension and occasional pain in the muscles I use too much, especially shoulders, are increasing. Slowly, not drasticly, but still... That said... do better than I do. Go to see your therapist, and take what helps you to relax your muscles. There are natural products which help as well. ... oh, I forgot... I am 42 now. :)

I take Zanaflex for my muscle relaxers and I also do Botox injections in my legs every 3 months. Speaking of I go in the morning 😢.

Hi I have been living with two children with CP one will be 18 yrs soon and the other is 8. we have a problem with falling while walking and the older one is having trouble with knees. we have started a channel on RU-vid @Alwaysfamilsnyman and I have done a personal one for me as a parent. Do you use Baclofen? do you wear AFOS or other foot orthotics?

Hi my name is Becky I'm from Colorado I have CP as well I'm 31 years old with it

Chelsey, solution to your joint pain.

I was on baclafan but now I'm getting botox to loosen my mucsles. I'm 48 & CP has been getting tough on me

Hi Chels! How can I help you!?

It's invasive but maybe ask your Neurologist about a Baclofen pump if Baclofen works for you now. Aging with Spina Bifida hasn't been fun, been gong downhill since I turned 40.

Wewt!

I can't believe your single . I have Cerebral palsy to i find it hard dateing women who except my disability so i have given up on marriage and kids i don't date anymore but I'm ok being alone sometimes i get sad but i have hobbies that i do like fishing and enjoying nature . Chelsea have a great day had my 49th birthday march 14 this year it sucked i was depressed but you know we all have bad days and good days god bless you .

Careful with those pills.

I missed you there beautiful Chelsea bear I missed you alot u make me smile to bad you didn't live here I have a wheel chair ramp no am not trying to make a move on you just as a friend ever get to the midwest I have room and you can go and come as you want remember I have a place and no hanky panky am not that guy am just a nice person

You are beautiful cheals

Your main problem is inability to perform middle split. You have to increase your abductor muscles. Change your therapist he is incapable to do it properly. You are capable to improve your current condition in 6 months. All I can see is your talking about your disability. You are not trying to solve it.