Let's Talk to an Adult with Level 1 (The Mildest) Cerebral Palsy: Meet Alex Robinson Part 1
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- čas přidán 29. 06. 2024
- I am so excited for you to meet Alex. He is a 38-year-old with Level 1 Cerebral Palsy (CP) on the Gross Motor Function Classification System. He can walk independently, walk up and down stairs without a rail, and run...if something scary was chasing him. He was initially diagnosed with quadriplegic cerebral palsy and later diagnosed with hemiplegic cerebral palsy. Alex is excited to share his journey as an individual with CP to be able to help others similar to him and parents who have a young child diagnosed with cerebral palsy. I loved spending every minute with Alex. I think you will too. This interview is broken up into 10-15 minute segments. Watch this playlist for future segments.
My website is www.pediatricPTexercises.com My Facebook page is Pediatric Physical Therapy Exercises. Do not hesitate to contact me at amysturkey@gmail.com with questions, concerns or favorable reviews! Please note I am unable to provide treatment recommendations for a child I have not personally evaluated.
I also have available 4 children's educational books addressing Autism, Down Syndrome, Cerebral Palsy and Attention Deficit Hyperactivity Disorder. I now also have 3 professional books "Pediatric Physical Therapy Exercises for the Hips", "Pediatric Physical Therapy Exercises for the Knees, and "Pediatric Physical Therapy Exercises for the Ankles." If you have questions or suggestions, feel free to contact me at amysturkey@gmail.com. Please note: I am unable to provide treatment suggestions for a child I have not personally evaluated.
I am so honored to have people from all over the world watch my videos. I have reviewed and corrected the closed captions for this video so that you might understand what I am saying even if you don't speak English. I hope the directions below are helpful to you.
To turn on Captions, click CC in the bottom right corner of the video
To choose a different caption language:
At the bottom right, click Settings. It looks like a wheel.
Click Subtitles/CC.
Select a language.
If the language isn't listed when you click Subtitles/CC:
Click Auto-translate.
Select a language.
Of course, if the captions are in the way of viewing the details in the video, you can always turn them off in the bottom right-hand corner of your video screen.
Here are the links for my books on Amazon:
"A is for Anxiety"
www.amazon.com/dp/B09LXQ3W6V
"A is for Attention Deficit Hyperactivity Disorder"
www.amazon.com/dp/B08QH9H5HR
"C is for Cerebral Palsy"
www.amazon.com/dp/B088TSJCYP
"D is for Down Syndrome"
www.amazon.com/dp/B079P8HH49
"A is for Autism"
www.amazon.com/dp/B071F4FFTB
"Pediatric Physical Therapy Strengthening Exercises for the Hips"
www.amazon.com/dp/0998156736
"Pediatric Physical Therapy Strengthening Exercises for the Knees"
www.amazon.com/dp/0998156760
"Pediatric Physical Therapy Strengthening Exercises for the Ankles"
www.amazon.com/dp/B08TX2ZCFD
Hi- I’m way older than those whose comments I’v read here. I was diagnosed very young with mild cp and received physical therapy as a child. Now in my mid-50’s I’m having a lot more falling and exhaustion. It’s so frustrating. I understand how others feel. Thank you for this video!
I’m so glad you left your comment
I’m about the same age and have extremely similar CP. I was super active as a kid. By 15 I had no assistive devices. I have a degree and was able to work. But as I am getting older, I have needed more assistance. Increase in falls, post impairment syndrome, and recently having new issues with my throat, and more noticeable muscular dysphonia. I’m back in an AFO and use mobility devices. I was having so much trouble keeping a job, I finally had to get disability. I’m LGBT too. 😊 It’s nice to see another person with CP similar to mine. I also saw the show Special and felt the same.
Thank you so much for adding your experience
me too!!
@@maxspindel6999 so glad you found my channel
Thank you for the honest and truthful comments! It’s amazing to see your perspective on all this, some people may focus only on the technical side, but we’re talking about human beings with feelings, desire, fears. Amazing interview! You two together have a cute chemistry! I have a feeling I’ve learned more about the world. Can’t wait for the second part.
Yes! I had a new friend at the end of this interview. We made plans to stay in touch. The rest of this interview is wonderful too. Can’t wait to get it produced.
Thank you for sharing! Im a mother of a 3.5 year old son with spina bifida. It's always so encouraging to see adults with neuromuscular issues thrive!!
Just what I wanted! Thank you for letting us know!
Thank you! I want to share this with my daughter who is 10. This will help her not feel alone and understand PT is to help and not a punishment.
Perfect!!!
This is so relatable. I also have level 1 cp. Hitting my 40s I can testify that taking care of your body and regular exercising is non-negotiable. I also stopped with PT at 18 and regret not continuing with that.
Thanks so much for these videos for many years it was quite a lonely road not knowing of other adults with mild cp.
Now with social media it is quite inspiring to see what young adults with cp are accomplishing.
Delighted that you found it helpful
My brother has mild CP and is 26, I really like that you are shedding light on this CP in young adults. It is very challenging when others see you as 'normal' but you have CP so it does impact your everyday. How do you keep your mind in a positive place, my brother is very depressed as he struggles with a public job. He too did a physically demanding job for 2 years and it really took a toll, he now has a more mentally taxing job and his boss and coworkers done seem to understand or consider his limitations. As a supportive sibling it is hard to watch and listen to his setbacks, how can I help him further?
I think the most important thing you can do is talk to your brother and ask him how you can help. I am so glad you are liking this series. Thank you for taking the time to let us know.
I'm so happy that you are doing this series! You are so brilliant. I don't know what level i am though
The Bible says God prefers for people to be in LGBT relationships.
Anyone that teaches the LIE of monetary tithing, sells anything using the gospel, or teaches that same-sex marriage is a sin CHOOSES to die with the wicked.
Luke 10:7 states the only wages for ministering are eating and drinking whatever you are given.
Also, know that rich people will all die. You can't be a Christian, sit on all kinds of money, watch your fellow brothers and sisters starve, suffer, or be homeless, choose to do nothing about it, and think that it's ok. Those are all wolves.
Mathew 19:12 Eunuchs that are born that way are transgender. Eunuchs made that way by others were abused in some way and something inside of them blocks off a certain type of body but it doesn't happen to everyone that is abused. Those that choose to live like Eunuchs FOR THE SAKE OF THE KINGDOM OF HEAVEN are bisexual people that choose partners of the same sex-characteristics but opposite in regards to gender. Notice, it states God PREFERS for people to be in LGBT relationships. Leviticus, Corinthians, and Timothy were translated wrong by Billy Graham. Those verses are actually referring to pedophilia. Romans 1:27 All of the men were male in regards to gender, all of the women were female in gender. It is not referring to Eunuchs (where one partner is transgender). Also, it had nothing to do with marriage of any kind. They were trying to procreate during orgies so God did it on purpose. Anyone that continues to teach same sex marriage is a sin when the Bible says God prefers for people to be in LGBT relationships will also die by their own choice.
In order to be a church building, the place must house people inside of it. Otherwise it is just another private money-making business part of Babylon that furthers satan's agenda. Stay out of the fake churches. Eventually, they will be shut down.
I am Elijah of Malachi 4:5-6 and Acts 3:22-23 says it will come to pass that anyone that fails to listen to me will be UTTERLY destroyed from among the people. Again, everyone has a choice.
And anyone that deletes my messages CHOOSES to reject Jesus Christ Himself and that means they also CHOOSE to die with the wicked.
I am Elijah so that means any discrepancies in the holy books are ultimately decided by me. I am also to usher in the Messiah! Be ready: Jesus is coming back! Malachi 3 says when He comes back, He will come to me first wherever I am at at that time.
WORLD PEACE IS COMING!!
By the way, anything based on gender norms no longer applies. In fact, the last will be first and the first will be last. It's women that will mostly be ruling the kingdom of heaven.
Rich people do NOT get into heaven. A camel can not go through the eye of a needle.
Malachi 2 proves Malachi 3:8-11 is talking to the thieving church leaders! It's prophetic instruction to return the money they were never supposed to take for ministering and God will end Covid. Every major church and fake Christian television network around the world knew how to end Covid since August of 2020, but they LOVE MONEY so much they intentionally chose to kill people with Covid instead of repenting and bringing all the stolen money back that they were never supposed to take in the first place..
Rapture is NOT what most people think. Read Malachi 4:2-4. It's when God's true people transfigure and shine like the sun with glory of God RIGHT HERE ON EARTH! Spiritually, yes, people will enter the demension of heaven, but nobody physically leaves. Jesus comes back to literally walk this planet and rule.
I already had a vision I was above the clouds looking at a red/ orange sun about to rise!
Pre-tribulation rapture is false teaching. Tribulations is the refining fire of torture Christians have to experience in order to get to heaven. Only those who endure to the end will survive. The 144,000 are coming out; they have already experienced hell on earth (tribulations), mainly by people who calld themselves Christians but are merely wolves that will die unless they repent and apologize.
@@elijahdieker7016 what is that got to do with my question? And I am saved
Thank you for your kind words. I am excited about this series too. Maybe this video will help you determine what level you are:
czcams.com/video/6lpcwZSC7A4/video.html
44 years old in Atl here. (Family too!)
I remember the day I said “R” in speech therapy in 5th grade. 😀
I’m left handed too. Bad handwriting. Typing is slower too. Speech text is a blessing now.
Bedsores are a thing because I don’t feel a need to shift around while sleeping.
Thank you for sharing your experiences
Very interesting. Would like to see something on aging and cerebral palsy. Life changes much as well as functional ability. Caught me way off guard. At 61 struggling to find my way. Continue to go to physical therapy when insurance allows
So glad you liked it. Your experience would be good to interview. I’m having trouble finding middle age or older people to interview.
I was born 3 months premature in 1983 and later diagnosed with Mild Cerebral Palsy after going into Hospital at 5 months with stomach issues. I used to have physiotherapy for my feet as they were tight and I used to walk with both feet pointing inwards. In adult life I've taken to wearing orthopedic insoles in my shoes to correct my feet rolling inwards. People often ask me how does Cerebral Palsy affect you on a daily basis and I simply say I don't know as I've lived with it for 39 years. I was in and out of special units as a young child, I didn't start walking until 2 maybe 3 years old, My parents noted odd speech patterns at 12 months old. I had to have speech and language therapy in nursery school, I was placed in a children's Psychiatric Unit at a young age. I was a very disruptive child, prone to violent outbursts, low mood, anger issues, issues with dealing and reading emotions, running away from home, isolating myself in my room, not relating to pears, no meaning friendships, erratic moods, severe mood swings, verbally abusive etc. I was blamed for any trouble that my family were having, looking back now 39 years later I was a scared and confused little boy in a very messed up house with a distant father who chose to work away from home and a mother who couldn't cope with two children and felt forced into having her second child alongside her own mental health battles. I suffer from severe depression and anxiety and I'm always looking for answers to questions that are there but I know I'll never ever get a clear answer, partly due me severing all ties with my family and medical records being destroyed. It always annoys me when someone says oh you can't have mild Cerebral Palsy, a GP looked at my records in 2017 and said to me although diagnosed with ADHD, Asperger's and Mild Cerebral Palsy at a later date you had a medical and showed no symptoms of any of them which led to me questioning my own identity. But now I've got access to my social services records and also my primary care records it lists those conditions on there.
Wow. It looks like you have been thru a lot. Thank you for sharing your story here. Emotional volatility issues can be very common with people with cerebral palsy, even if mild. I wish you the best on your journey. It sounds like you have gained a lot of insight in your search
I'm 38 years old with stage 1 and recently have been having a hard time. The pain has been unbelievable and I didn't know I could have surgeries to help me. I recently lost my job. And am looking for another.
I am so sorry to hear about your pain. Thank you for adding your story here.
I had most my therapy in The military. Because my dad was in the military and was diagnosed at 6 weeks so that was when my parents were instructed to do crawling motions for me 4 times a day that young.
I remember hearing about that treatment protocol
I wish I would've known to start doing that with my baby.
@@mrsjrenae4738 She provides an interesting historical perspective in treatment of cerebral palsy
I have spastic diplegia cerebral palsy. Im 29 new mom i was able to walk independently until 26 years old a year after i was diagnosed with small fiber neuropathy that further made walking difficult. My vision impairment is the most apparent to most people. A nurse had notice that i have a speech impairment which i didnt know. It was more apparent when i was little but my words sound normal but the flow is not normal. I had 6 eye surgeries in the last one we found out it was the nerve and not the muscle. Im still discovering these things about myself.
Thank you so much for adding your story
I also have mild CP. I also share some of the traits he was talking about such as. Being left handed. My CP also effects my right side primarily as well. I was also born very premature as well. A Little about me:
I currently work as a Pharmacy Technician in training and I barely can function at my job a lot of my managers/ coworkers just don’t understand what I go through and just think that I’m slacking honestly I’m not sure what to do anymore I honestly think I should just quit. I’m unsure what to do career wise.
Thank you for sharing your experiences. I hope you can find understanding from your co-workers or you can find a career that can meet your needs. Wishing you the best
I also have mild cerebral palsy on my left side of my body
I am so glad you found this video. Thank you for adding your story.
My son is diagnosed with mild dyskinesia (choreathetosis) cerebral palsy, he walked at 17 months. He is now 21 months and is able to climb up/downstairs with assistance. However, understand that this type of CP will affects the whole body - including mouth, arms & hands so would really like to know more. As 80% of the CP cases are spastic CP, and it’s not easy to find someone with mild athetoid CP sharing their stories. May I know if there will be any videos coming up?
I am hoping to be able to interview someone with athetoid cerebral palsy. The one I know of does not sound like they are quite as mild as your son is.
What is mild Athetoid
I have a mild case of cp it only affected my left side, I walk ok without help.
Thanks for adding your experience of CP
I'm a bit older and unfortunately during my time there wasn't much info regarding CP nor the specific types of CP. I didn't receive an official diagnosis until much later in age, prior to that I had gone through several confused Dr assessments which resulted in painful test therapies. I have minimal ability to walk without assistance or handrail but I do reasonably well indoors vs outdoors in which I need an assistant device. I also had surgery upon finally receiving a diagnosis but my physical energy and pain tolerance has declined as I've grown older thus I've been experiencing more pain in recent years specifically while standing for long periods. I have almost full motor function in my upper body but experience mild to moderate tremor in my left hand thankfully I'm ambidextrous. It's unfortunate that there are so few thriving channels which talk about CP in fact little to no other channels like this pop up in search nor are recommended, there needs to be more education and awareness, thank you for sharing ❤️✨
Thank you for sharing your experiences here. And thank you for the encouragement. I am delighted it filled a need. I will continue these
@@Simply_Human23 thank you for your advocacy. We are making a difference!
Another person with CP level 1 that worse on my right side and a lefty that had speech therapy and chest tubes...oh and of course a preme crazy similarity I'm 39
Thank you for adding your story here. I am so glad you found my channel.
I’m sandra lowery I’m 68 yrs old I was an a miracle baby iwas a home birth I was not breathing a first I supposedly died for few minuets before was revived then the next day had a stroke and was taken a military hospital the doctor on staff had been working a new medicine for brain damage head injuries for soldiers her tried on me. Because another bigger stroke at that time it work He called a miracle baby i serviced I walk at 20 months old and crawled by 11 months old aa walk independently by 21 months old and can still walk today at 68
You are truly blessed
Hello! I have mild cerebral palsy that effects only my legs. (I forget what it is called). I am 19 years old and I work as a cashier. I can walk and write, but with my disability it makes it extremely painful to stand for long hours. I’m planning to go into a job of Recreation Therapy
Diplegia is the type of CP that affects your legs only. Thank you for adding your story
I have mild spastic cerebral palsy I was diagnosed 6 weeks ago because the doctor witnessed me having 2 strokes after birth At 6 weeks they had my parents do the crawling motions 4 times a day by doing. This I crawled and walked independently by 20 months old iwas born inthe middle 50 s I came from a military family so the military doctors knew more about brain injuries. Because veterans coming with injuries.
Thank you so much for adding your story
I meant At 6 week old the doctor witnessed me having 2 strokes after birth at 6 weeks the doctor had my parents do the crawling motions 4 times a day by doing this I crawled walked independently by 20 months old .
I understood
I would like to know more about your experience. My son had stroke at birth now he’s 4 months old doctor said he had severe brain damage but we are still not given up on him. We are looking for any treatments that can help him to get better. He’s full movement boths hands and legs but still not smiling or talking back yet plus he had bad reflux and not gaining weight we need many advice from everyone who’s experienced the same condition. Thanks and God bless you all.
Another Robinson w/cp. I am like him. But mine was not so nice . Gave me LD , asthma and other. I found older adults are looked over with cp. if we have mild cp . We are really pushed side. Now when get older then really start showing. That’s what the medical community does.
I am sorry to hear that has been your experience. That is why I am making these videos to help shed light on adults with cerebral palsy. Thank you for adding your experience here.
I have mild cp due to my birth and I'm 36 and my back is constantly sore and I'm in pain I've had to go down to two days a week I have been for a ct scan and still no answers as yet the pain travels starts in back goes down my arms and down my legs I also get tingling in the hands is this normal for adults who have cp?
I am so sorry to hear this. But I am glad you have added your story. I do not treat adults with cerebral palsy. But I would imagine malalignment overtime encourages pain. I recommend you find a local Physical therapist who can help you.
@@pediatricPTexercises I live in new zealand so I'm going back to my gp hopefully it will get better
@@martinsamuels2897 I wish you luck and By the way I loved New Zealand. We were there early 2020
By any chance do you wear othropedic insoles in your shoes to support your feet to alleviate back pain? I'm unsure if you ever stretch your quads, but do some quad stretches too to temporarily alleviate the lower back pain!
@@mrsjrenae4738 I forwarded this question to him to answer
I'm currently disabled. God gave me a dream that I will be miraculously healed. At some point in our lifetimes, disease and disability will no longer exist. For those that endure until the end. What are you going to do when your loved ones that passed away knock on your door? Prophets told me I will be helping Jesus resurrect the dead.
I hope hearing other people’s stories give you some comfort