Physical activity and exercise have been an important aspect of cerebral palsy treatment plans for several decades. However, it is only in recent years, that researchers realized the importance of strength training for people with cerebral palsy. Studies indicate that strength training has the potential to improve several aspects of life by increasing mobility and strength. With cerebral palsy month just around the corner, it is fitting to take a closer look at how strength training can help people living with cerebral palsy.
The Benefits of Strength Training in People with Cerebral Palsy
Reduces muscle weakness
For people living with cerebral palsy, muscle weakness of the arm and hand can make it difficult to complete everyday activities such as getting dressed, bathing or even using cutlery. Furthermore, this muscle weakness often co-exists with spasticity (stiffness) and dyskinesia (involuntary muscle movements). Similarly, muscle weakness of the legs can make it difficult for a person to maintain their balance and walk. A recent study on the effects of strength training for children with cerebral palsy concluded that a combination of progressive strength training with task-specific training can reduce muscle weakness. A similar study found that task-specific strength training for children aged 4-8 years with cerebral palsy resulted in improved strength that was maintained over time.
Increases in joint strength
The amount of muscle is directly proportionate to the strength of the muscle. Since people with cerebral palsy have less volume of muscle, they have less strength. Orthoses are often used to provide joint stability but this can have a negative effect in the long run. For instance, researchers found that ankle-foot orthosis can provide stability of the ankle but it can lead to disuse weakness as it restricts the movement of the ankle joint. Strength training which focuses on the hip extensors and flexors, the knee extensors, and the ankle plantar flexors increases the strength of the joints of all the targeted muscles. Other studies have found a correlation between walking speed and walking endurance and lower-limb isometric joint strength.
Improves walking ability
Children with cerebral palsy have about 36% to 82% of the muscle strength of typically developing children. This is associated with muscle weakness in the lower limbs which results in decreased walking capacity. A study on improving walking capacity through resistance training found that resistance training with exercises at high movement velocities provided significant improvements. The children in the study showed an increase of 13% in their walking velocity and walking capacity increases ranged from 13% to 83%. The results of this study indicate that 3 sets of 6 to 8 repetitions at maximal effort, 3 times a week for 14 weeks can help to improve walking and sprinting performance in those with cerebral palsy.
Increases gait function
Spasticity or contractures of muscles cause gait deviations which increases the energy requirement of walking. In fact, children with cerebral palsy expend as much as three times the energy required for walking as compared to their typically developed peers. Multiple studies show positive effects of strength training on gait function in children with cerebral palsy. One study found that strength training 3 times a week for 8 weeks increased muscle strength, stride length and Gross Motor Function Measure (GMFM). The training focused on the lower extremity muscles and used free weights, rubber bands and body weight for resistance.
Provides psychological benefits
Most of the discussion on cerebral palsy focuses on physical disability and not on the psychological impact of this condition. 25% of children with cerebral palsy exhibit behavior problems such as hyperactivity and anxiety and are prone to conflict with their peers. Children with cerebral palsy are also more likely to have a strong emotional response to a new challenge. Similarly, teens and adults with cerebral palsy are at a higher risk for depression and anxiety disorders. Participants in a study on the benefits of strength training for young people with cerebral palsy reported psychological benefits from their 6-week program. This included feelings of increased well-being as well as improved participation in their school and leisure activities.
Strength training offers a variety of health benefits but it is important to keep in mind that each individual is unique and therefore has unique requirements. Researchers point to the fact that children in their study have a range of responses to the training. While some have marked improvement in strength and endurance others have moderate improvement only in strength. This is why it is important to ensure that each individual with cerebral palsy receives the type of treatment that is most effective for him/her. Therapy and counseling can help people living with cerebral palsy stay mentally and emotionally strong through the many challenges they face. Cerebral palsy support groups and forums can also help individuals to connect with others who are in similar situations and can provide practical advice and guidance.
When you fly and have several stops to get to your final stop, you feel all dirty and need to change. If you are an able body, you can change in the bathroom without any trouble. When you are a person with a disability, it is really difficult to change in a bathroom stall. In a bathroom, there is usually a changing table for little children, so their parents can change them easier.
Is Adult Changing Table Possible?
Can this be scaled so that a person with a disability can be changed easier? The answer is yes, and Arizona’s government has passed a law on May 7, 2019. This law requires a public building to put an adult changing table if they are building a new building or are remodeling that cost $50,000 or more.
People who have disabilities are human beings and not dogs. They don’t want to be changed on the floor in a bathroom. I hate to sit on the toilet, so I can’t imagine laying on the floor. I know that they try to keep it cleaned, but they cannot clean after someone goes to the bathroom.
A Mom’s Fight
I never thought about this issue before since I don’t need to be changed and I would say most people never thought of it either. How I heard about this was through a mom who I have met at the TASH conference in Arizona. She was the one who worked with the governor to get this law passed. She has a teenage daughter who has Cerebral Palsy and has to be changed.
Some people would say that this law is silly, but I have a question for you to think about. If there is no adult changing table for your teenager or yourself, would you take them out in public knowing that they might have to be changed on the floor of a bathroom? You might say that you will stay at home to be safe.
Is it fair for your teenager or yourself? I don’t think so because you have the right to go out to enjoy life. Your teenager or you should not feel sad that you have to be changed. It is a part of life and I know it feels awkward, but you should not stay at home.
Requirements of a Changing Table
The requirements for a changing table are the following:
- Must be able to hold at least 350 pounds
- Have to be placed where the caregivers can safely and have the room to help the individual
- Must be designed to accommodate people with disabilities, children, babies, aging population, and the individuals who use a catheter
Doing the Right Thing
This is not a long list of requirements, so this should be easy to provide, but there will be some people who will say it will cost a lot to money. My reply for them is so what because if you do the right thing, you will get more people coming into your place. It is a wise decision to spend a little more money up front and get a load of money later. It is because people will come back over and over. That is why good companies survive and bad companies do
It is so fun to know what your I.Q. is and we sometimes ask our friends what their I.Q. is as a joke. What are these statistics for and does it have any importance for how smart we are? I will answer the latter question first. The answer is no. There is no evidence that shows how smart someone is. If I were to make a new test to know how smart someone is, it will be good as the regular test is.
Who Developed I.Q.?
Now for the answer for the first question, it was used so Hitler could get rid of people with disabilities. We only think he was targeting only Jews, but it is not the case. It was used to weed out all the people who had an intellectual disability. There is a great movie called “Intelligent Lives” and it is on Amazon Prime. It talks about how I.Q. got started and shows how people with intellectual disability can become an asset to society.
Partners in PolicyMaking
We often live in our own world and don’t see what is happening. For those who are not getting my newsletter, I am in a class called Partners in Policymaking which every state has. This class is for people with disabilities and parents who have children with disabilities. It meets for two days in a month for nine months and this past weekend we had the class. The topic was education. One of the subjects was on Positive Behavioral Interventions and Supports or PBIS.
What is PBIS? It is a framework for the school to adopt and it is mainly for the staff. It focus on the behavior of all the students. Many students don’t need help in school, but some do. The teachers are trained to help the students before they have a meltdown. The reason why they want to catch it before the student has the melt down is because if they can help the student early enough, the student can be calm down faster. Otherwise, the student cannot function in class.
Example of How PBIS Helps
One student had stress and some days they were in a good mood and some days they were in a bad mood. The school figured out that it started first thing in the morning. What they did was every day the school would called the students at home to see if they were having a good day or a bad day. If they were having a bad day, they would see someone who could calm them before going into class. As the year went on, the student learned how to calm themselves without needing help.
Like I said that this framework is for everybody in the school to adopt. There are three tiers in PBIS and each tier aliens to the type of support students need. Tier one is for everyone. The school is structured to have positive expectations and behaviors. One thing that got to me is they focus on is respect for everyone. To me, this is really lacking in this country.
Each tier gets smaller as the tiers increase. So, when they get to the third tier, the number of students is much less. If a student is in the third tier, there is a multi-disciplinary team for each student. The student has a behavior support expertise and formal fidelity and outcome data are collected. In the third tier, there are usually 1-5% of the students. This number of students is something that the school can handle.
Think Outside of the Box
The question that comes to my mind is why don’t more schools have PBIS? This framework is for everyone. Yes, this works for students with disabilities but let’s think outside of the box now. There is a lot of bullying at school but there are many unwanted shootings in schools. To my mind, PBIS might be one way of stopping the violence in schools. I don’t mean it will be the final answer, but let’s try something that might help everyone. Students need the support that their parents can’t provide and this might be one way that can save lives.
Imagine being wakened up by a phone call from a hospital at 2 o’clock in the morning on a cold day in December. All they say is to come to the hospital right away. It is your son. What would you do? You don’t know what happened. It would freak me out for sure, but this happened to Mr. and Mrs. Swann on December 23, 1999, with their son Jason Swann. That day would change their lives completely for the rest of their lives.
Mr. and Mrs. Swann had three boys and one girl, and their oldest son was Jason. Now, Jason is a son that everybody wants to have. He had all A’s in high school and played sports like football, basketball, and baseball which he loved the most. Jason Swann had a job working at a local diner in Missouri. He went to church every Sunday with his family. Jason is a person who everybody loves dearly.
On December 22, a group of friends was going out for fun because a childhood friend came home from the military. Since Jason is a great guy, he offered to be the driver for the night. They were coming home from a fun night on a one-way road and a car took a wrong turn and hit his car head-on. The driver of the other car was a nurse who was drunk. They took Jason to the hospital by ambulance and after the doctors looked at him, they didn’t know if he would make it through the night. By a miracle, Jason did survive.
He mimics a Quadriplegic, but he can feel everything. He’s also nonverbal, but he is smart. He talks when someone runs through the alphabet and when they say the letter that he wants, he looks up. This is a long process to do, but sometimes I do this too when I don’t have my iPad in front of me. His mom said he doesn’t have enough control of his head and hands to work a computer.
Back in 2015, he had kidney failure so now he is on dialysis four times a week. With the help of his care team at Fresenius Kidney Care and since his mom is a nurse, they found an at-home treatment option. I asked her why they do it at home, and she said that his body can’t control his temperature at all. So, if he goes out in the summer, his temperature would rise and the opposite would happen in the winter. He doesn’t go out very much.
Jason Swann Loves Life
You must be wondering if he likes life and the answer is yes. He never once complained about being a person with a disability. He loves football so one of his friends or brothers helps him to play fantasy football. Last year he did very well in his league.
A lot of people would say they wouldn’t want to live in Jason’s condition. I would say that he is a very unique man who has the right to live. He has a few nephews and a niece who crawl on his lap and make him laugh. They didn’t know him before his accident so this is the only way they know him. They love being around him and don’t considered him different because he is not different. Yes, he needs help but he is a human being.
Effects on the Family
I asked his mom how Jason’s accident affected her marriage and the family. It affected her marriage greatly and her husband went into depression and after some years they got a divorce. A few years ago, Jason’s dad died. I am noticing that moms have a lot more strength to overcome tragedy like this. I am not saying that moms don’t suffer pain and loss, but they just deal with it.
Jason’s brothers and sister are really involved in his life. All of them are married and their spouses help out with Jason. I know that God has a plan for this family and they met it head on and accept it. My mom always told me when I have a struggle, just turn to the Lord for help. It always helps me.
If you are having a bad day, just think about Jason Swann. I am sure he gets frustrated with how his life turned out to be, but he accepts the cards that he has been given. Maybe we all should do the same.
As a child with Cerebral Palsy, education is really difficult to receive. Schools sometimes overlook the potential of the students and not provide the education that the students need. There is a school that is making a difference with students with Cerebral Palsy. It is named HMS School which is in Philadelphia, PA
How HMS School Got Started
HMS School started in 1882 and was the first institution of its kind and was founded by Helen Innes. She and her husband had custody of a boy with a disability. They had trouble finding an appropriate home for him so she decided to open a home for all kinds of children for free. When Polio was the highest, they took in children who were discharged from hospitals as hopeless cases. She took in 18 children who were provided care for the children with Polio. In the 1960s, they turned their focus on helping kids with Cerebral Palsy and they are still doing that today.
Why is this school unique? Well, they provide education to students who are not getting the right education in their school district. They take the student into their school until the district can provide the necessary accommodations for the students or the students are 18 years old.
Another unique thing about this school is if the student lives too far away from school, the student can live there. In 2007, they expanded the living hall so more students can live there. The students live there during the week and go home on the weekend or just live there all the time. There are personal care assistants who take care of the students around the clock. I think it is so important to provide the necessary services for them.
A child with Cerebral Palsy needs a lot of therapy because if therapy is not provided, the students will have a difficult time learning in the classroom because their bodies will become tight. HMS School has physical therapy, occupational therapy, and speech. They all help the students to be the best they can. They also help the students to communicate with others through a communication system.
Like any other school, they provide art, music, and sports. HMS School puts on plays and has a yearbook club that a student can join. They take the kids out in the community to the museums and other educational places. Besides that, they bring in different people to talk to the students around certain times of the year such as black history month. So, they try to help the kids learn.
When the students get close to graduating, they learn life skills so they could get a job. I don’t know if they could go to college or not. Remember that HMS School take students who are having trouble in the regular schools. Like a parent said that his son had no way of communicating before going to this school. I think communication is so important for everyone because how could a person tell someone what they want.
More Schools Like HMS School
Since HMS School is doing a great job in helping students with
Cerebral Palsy, why don’t other states have schools like this one? That is a
good question to ask, but I guess it takes a lot of money to run. On the other
hand, I am afraid to say this but it is the fault of the regular schools for
not accommodating the student. Yes, being at HMS School is a huge help. Being
in a safe environment like at HMS School is good in one sense but might be bad
too. It all depends on what the students will do after they leave the school.
If you want more information about HMS School, they have a website that you can
go to. It is www.hmsschool.org.