06/10/2023
Today is World Cerebral Palsy day.
Most of you probably don't know what Cerebral Palsy really is, except for what I've told you or you've seen from me. So this is me giving you an insider's look, if you will, making you aware of Cerebral Palsy, so that if someone else asks you will be able to educate them.
Living with Cerebral Palsy all my life I have done research to help my understanding of how it works. I have a combination of ataxic and hypertonic (rigid) Cerebral Palsy. What does that mean?
The ataxic and hypertonic Cerebral Palsy makes my legs extremely tight. If you took a rubber band and pulled it as tight as it could go that would be a good example of how tight my muscles are. It also throws off my balance and coordination with my legs. I was born with my feet on my tip-toes and turned inside towards each other. The doctor’s thought I might have club feet, placing me into casts trying to correct it, when that didn’t work; they diagnosed me with Cerebral Palsy. I have had four surgeries in my life, one when I was 3, one when I was 7, one when I was 10, and one recently at 34. I have had casts, braces (on my legs) and physical therapy to help with my Cerebral Palsy.
I have recently started getting Botox injections in my calves in order to relax my tight muscles. The Botox makes the muscles weak and there for my muscles are less tense making it a bit easier to walk or place clothing on. The injections do hurt and I have to get them every three months, but it is very interesting because when they are injected you can hear my muscles make noise from how tight they are.
I also take muscle relaxers and nerve pain medicine to help with my Cerebral Palsy.
I can walk unaided, but sometimes use a walker or a wheelchair to get around large areas.
Why am I telling you all this? I would just like to educate people about it, not just any people, but the people I know, so that more people will know about it. I hope you find this information help-ful and interesting. And when someone asks about it you would be able to tell them at least a little about it.
I am always open to people who want to ask questions, as long as they ask me in a respectful manner. Feel free to always approach me with questions.
Below I have listed facts about Cerebral Palsy...
Cerebral Palsy- a disabling disorder of the brain’s motor centers.
History:
Cerebral Palsy was once called “Little’s Disease.” William Little (A British Doctor) in the 1800's identified Cerebral Palsy as a separate condition. He explained how Cerebral Palsy is different from other physical and mental disabilities.
Causes of Cerebral Palsy:
-A defect in the structure of the brain
-Exposure of the mother to infections such as German measles or herpes
- Exposure of the mother to poisonous chemicals
- Diseases that the mother has, such as diabetes or anemia
-A lack of nourishment in the mother
- Physical injury to mother
-Too little oxygen reaching the infant’s brain during pregnancy or labor
-Injury during delivery
(Side Note: The doctor’s never figured out what caused my Cerebral Palsy. Sometimes it’s hard to tell if they can’t find anything through tests.)
Signs of Cerebral Palsy- difficulty sucking or swallowing, favor one side of the body, have spasticity of some muscles, lack energy, difficult to wake, problems with seeing or hearing, unusually tense or irritable.
Symptoms of Cerebral Palsy- Symptom One- The muscles are weak, Symptom two- The lack of Muscle tone, and three- tightness of the muscles, Drooling, Difficulty with speech, Difficulty with bowel and bladder control, hand tremors or shakes, Inability to name objects by touch..
Types of Cerebral Palsy:
Spastic Cerebral Palsy- (most common) Poor signals from the brain to the spinal cord. Examples: Spine reacts on it’s own, some muscles contract, and some become tight and stiff and suddenly relax. People with this type of Cerebral Palsy have trouble moving their legs or arms.
Athetoid Cerebral Palsy- The muscles are constantly in motion. Example: The body may twist and turn and jerk suddenly.
Ataxic Cerebral Palsy- Disturbs the balance.
Hypotonic Cerebral Palsy- The muscles are weak and floppy.
Hypertonic (rigid) Cerebral Palsy- The muscles are extremely tight.
Myth:
-All people who have Cerebral Palsy are in wheelchairs. The condition has a wide range of the severity.
What Cerebral Palsy is not:
Not a disease, more accurate to call it a condition
Cerebral Palsy does not get better and it does not get worse
Cerebral Palsy is not curable, it is a chronic, or life long condition
Cerebral Palsy is not contagious, cannot pass it to another person.
Treatment/Diagnosis for Cerebral palsy:
Diagnosis of Cerebral Palsy:
1. No blood test
2. Motor Skills- To hold head up, rolling over, sitting, crawling, walking.
3. Finding Associated Problems- A CAT scan is conducted to see if the brain tissue is scarred, they also check the ability of muscles and ability to control them.
4. Checking Intelligence- They give them an IQ test, like arranging blocks because children with Cerebral Palsy have trouble using their hands.
5. Checking Vision- They have children identify pictures from a distance away, like an apple or a Teddy bear.
Some Treatments of Cerebral Palsy:
-Medication- Va**um: helps control unwanted muscle contractions, Diazepam: Tight muscles loosen, Anticonvulsants: for seizures, it slows the abnormal movement when a seizure occurs.
(Side Note: I take one called Tizanidine to help with my muscle spasms, one called pregabepelin for nerve pain)
-Braces- These braces are light weight and can be worn on the foot, the hand, ankle, leg, hip depending on where it is needed the most, they are fitted to the person who needs them.
-Surgery- lengthening the Achilles tendon, can have this done more than once, helps mobility of the patient.
-Physical therapy- helps muscle tone, mobility, exercise program fit to the person who needs it, balance, also they give them exercises to do at home.
-Occupational therapy– helps develop improvement on their hands, fingers, mouth, feet and toes.
-Speech therapy- helps with pronouncing certain letters, speak more clearly, ability to understand concepts
Alternate Treatments:
- Controversial therapy
- Chiropractic treatment
- Cranial Manipulation
-Acupressure
-Mechanical treatments
-Biofeedback
-Yoga
-Swimming
-Therapeutic Horseback Riding
-A Controversial Treatment
Why these aren’t always used:
They risk of not getting any better by these treatments though some become more independent.
(Side Note: I use a wheelchair for places that have a lot of walking)
Living with Cerebral Palsy:
-Getting Teased: Examples- staring, cruel things said, called names.
-Telling Others: spreading information about it so that people understand what that person is going through.
- Fitting In: It’s not always easy fitting in because not all people with Cerebral Palsy can do what other’s do, though they can develop self-esteem by working on their abilities (Positive self-esteem: happy to be their selves)
-Making Friends: Hard to make friends because of their differences, but they usually find someone who accepts them for who they are.
-Sexuality: People with Cerebral Palsy can date, marry or even become parents, they are just as at risk for s*xually transmitted diseases as anyone else. They are able to have s*x even though many people assume they cannot.
Current Studies:
There isn’t a lot of funding/awareness for Cerebral Palsy as a person ages with CP, but hopefully in the future there will be more.
Feel free to ask any questions you might have.
