Cerebral Palsy Awareness Day 2023

Today is Cerebral Palsy Awareness Day in the US. I’m from the UK and I’ve been raising awareness for it for years, as well as for World Cerebral Palsy awareness Day on October 6th. I enjoy any opportunity to raise awareness. The CP awareness colour is green.

From searching through my blog posts, I’ve done posts about my awareness efforts over the years (Facebook posts, trying to get people to wear green, sharing general information).

I’m re-posting some paragraphs from my post on this day last year. That’s far more detailed, but here’s more about how Cerebral Palsy affects me.

I have Spastic Quadriplegia Cerebral Palsy with Hydrocephalus and all this means my muscles are too tight all over my body as well as my trunk and face. I have weak muscles too.

I have a powered wheelchair for mobility and I wear strong high prescription glasses. I am registered blind. I have shunts which drain off the fluid from my brain and these surgeries left a lot of scars.

I have difficulty with concentration, relaxation eating and drinking, swallowing properly, general mobility and positioning, sleeping, spatial awareness and vision as well as stamina, general coordination, grip ability and strength. I have a limited range of motion and have daily pain and spasms and seizures. 

So far this year, I’ve mentioned the words Cerebral Palsy and Hydrocephalus a lot in my daily life. This is because I’ve had to explain to doctors who don’t know me what disabilities I have. I’m also in the exciting but complicated process of getting new positioning equipment for my powered wheelchair.

Last year, a seating and posture evaluation revealed what my current seating doesn’t do for me, and this year we found someone to help. I’m waiting for a new belt as well as a chest harness and foot positioning aids.

I’ve been searching for a new wheelchair too. If you’ve read my blog before, you’ll know I love shopping. So far, it’s a slow process with the positioning equipment arriving since it’s coming from the US and New Zealand, but I hope it’s here soon.

Cerebral Palsy gives me a lot of daily challenges, and. I’m having more arm, hand and finger pain that’s been going on for a month and feels like numbness and also throbbing pain and pressure like someone is squuezing my wrists, fingers and forearms hard. I already have a lot of spasticity (muscle stiffness), as well as weak muscles.

Today as well as every day, I give thanks for my current powered wheelchair (Invacare TDX SP 2 NB) and the fact it’s a beautiful shade of dark purple and my comfortable Deep Jay 3 2 valve air cushion which I love, but which is not sold anymore 😦

I’m thankful to those who create equipment and medications to help those of us with CP.

I do wish the prices of equipment weren’t so high, as this creates worry and concern and means it’s harder to get. Lower prices would help so many people.

Happy CP awareness day if you have CP or know someone with it.

I’m now looking forward to World CP awareness day.

Disability A-Z: G is for Good and Bad Moments, Glasses and Green for CP Awareness

We all have good and bad days, but have you ever wondered what mine are like? If you have, read on….

My spastic quadriplegic Cerebral Palsy makes me feel like my muscles are stuck in a vise and they aren’t attched to my body.

My hydrocephalus, even though I have shunts, still causes headaches and unpleasant sensations any time of day or night, like as if someone is pressing down on the sides of my head or there’s pressure on different areas of my scalp.

My vision impairments cause headaches and dizziness.

With my disabilities, a “good day” can easily turn into a “bad one”, depending on what my body decides to do, so instead of a “good” or “bad” day, I prefer to think of each day as a series of good and bad moments.

Good Moments:

In my good moments, I will have slept better. I won’t have as much of a headache or nausea when waking up. I will be smiling more. I will be more comfortable in my wheelchair. I will be warm instead of cold (my ability to maintain my body temperature is impaired, and I feel the cold easily. The medical term for this is “impaired thermorregulation”, and it can affect people with CP, spinal injuries, MS and more).

Bad Moments:

During these. I won’t have slept well, will have a headache, nausea and more aches when waking.

I will be more sensitive and possibly cry. I will want to nap more because the headache I had when I woke just won’t go, and I will feel almost hung over. I will be thinking “when can I go back to bed?”

Bad moments are when spasms won’t let my muscles relax despite Baclofen, Tramadol, exercises and massages or when seizures and involuntary movements make me injure myself. During these moments, I will lie in bed and hope to feel better. My muscles will be throbbing as well as have their usual stiffness.

Bad moments can have me experiencing acid reflux, nausea or vomiting because of fatigue

I’ve never wished for a new body, or a cure for my disabilities, but a bad moment will take all my energy and make me be in a bad mood scared and emotional.

Bad moments are when my husband wants to take me to the ER, or when we end up there.

I try to be as calm as possible in the bad moments when my body is not cooperating, Often, sleeping is the only way to feel better. Extreme fatigue will make me not be able to move, think or communicate.

Glasses:

Some people wonder when I first started wearing glasses.

My eye conditions were first noticed by doctors when I was in the NICU. I’d have recurrent bouts of conjunctivitis. When I was being held by a doctor there, they noticed that I couldn’t focus my eyes well or track things, and thought I’d probably need glasses. “Probably” was the word back then because they had no idea how a premature birth at 29 weeks, birth asphyxia and a long list of infections and a long time in the NICU on life support was going to manifest itself in my body.

They knew I had hydrocephalus, and extensive damage to the left and right sides of my brain the movement center and the occipital lobe (the area controlling vision).

They knew my body was too stiff and my reflexes were too quick. They knew about my CP.

They were right about the glasses, and at age 2 after a lot of testing, I had my first pair of glasses.

I’ve had so many different styles and colours of glasses over the years: dark red, magenta purple, and even multicolored ones with blue, pink turquoise and yellow frames when I was around 12 or 13. At that time, I was into the book series, The Babysitter’s Club by Ann M. Martin, and admired Claudia Kishi’s wild and wacky clothing style.

Now, the glasses I have have rectangular lenses with black half-frames. I remember when I was being helped to pick new glasses by the lady at the optician’s shop, and she said “how about these? You haven’t had any like these.” It was love at first sight.

All my lenses have broken or the frames have been bent. I sometimes fall asleep with my glasses still on while listening to an ebook or audiobook.

I’ve never had sunglasses that were right for me. Sometimes in the past, a friend would help me try sunglasses (I’d try them over my glasses) and they would always fall off, but that gave me a good idea of what styles were out there.

To end this post, I want to remind you to raise awarness for Cerebral Palsy by wearing green, for Hydrocephalus by wearing yellow (blue in some countries, for example the US) and white for sight loss.

I wear eyeshadows in the awareness colours when it’s an awareness day or month.

Disability A-Z: F is for Feet, Fatigue and Fashion

We’re now at the F post in this series, and if I’m honest I didn’t know what to write about. I’ve talked a lot about my feet,

https://justkatherineblog.wordpress.com/2015/08/18/unconditional-body-beautiful-post-8-my-feet/

but for those of you who don’t know about them, they are very affected by my CP, as is the rest of my body.

I have always liked the fact I have small feet, the smallest in my family (around a UK size 4/5, US 6/7).

This brings me onto a topic I love: shoes. I find shoes in my size are often on sale because of the small size.

Years ago, I was always advised by Emma, my then-PT, to wear trainers/sneakers as she said they’d support my feet better. My last answer was “No way, I love shoes too much to just wear trainers.”

I thought of the carers who just wanted to dress me in joggers because they thought it was more comfortable. Until I said “No, I’d rather wear jeans or a skirt.” I insisted although they said joggers made their job easier when dressing me.

(Pro Tip: for anyone who needs help from a carer or someone else to get dressed: get the person to hide anything you don’t want to wear in a drawer or harder-to-reach part of the closet).

Get them to leave the clothes you pick somewhere in your bedroom so that the carer can see them straight away. This saves them going through your closet/wardrobe looking for something for you to wear and avoids them making a decision for you).

I thought this solution up as carers would rummage through my clothes and not leave them tidy.

Going back to the physiotherapy session with Emma, I remember she took my feet in her hands one by one and told me I had very high foot arches and needed thick soles even though I’m sat in my wheelchair. I thought “Yes, I agree, a lady needs comfort.” In reality, I didn’t say anything because having my feet and legs picked up and touched is painful as my muscles are so tight.

I didn’t have anything new like what she was suggesting, so guess what? That meant mum and I got a SHOPPING TRIP!

So off we went into the center of Oxford, one of the nearest large places with a good shopping area nearest to where I grew up. The City of Dreaming Spires has pretty good shops.

We went to the nearest sports shop. I didn’t find anything I liked until I saw them….white trainers with a magenta insole and magenta and lilac sole with magenta details on the shoe.

I didn’t care how they were going to be kept clean, I just wanted them.

Next, we went to the Sketchers store. These are my first choice when trainers are concerned, as they have amazing, unique styles. I have some black ones with silver glitter and a slight wedge heel- there’s no way I was going to wear them for PT (but I still love those shoes).

I found some nude beige ones with 3 stripes on each side of the shoe. Each stripe is a metallic colour: silver, bronze and gold. It was love at first sight with these shoes and they were on sale.

I have worn them so much ever since. They look amazing with my dark wash jeans.

After we bought the trainers we went home. I showed the PT the trainers in the next session and she said the Sketchers ones were better because of the thick sole. They both seemed OK in my opinion as they both had thick soles.

Putting on my shoes and socks and dressing in general as well as tying shoelaces is something that I can’t do. I have some shoelaces that are like a coil so you don’t even have to tie them. I only have one pair and would like to get more. They are for people with disabilities who can’t tie shoelaces and I think they’re a really good invention.

On to the medical side of things. I have a lot of spine. hip ankle and foot deformities.

My hips and pelvis are turned in at strange angles and that means that my knees and feet are too.

I have a “pelvic obliquity ” which means the angles of my pelvis are different from each other (my pelvis is higher on the left than the right and my spine curves to the left to try to compensate).

As my pelvis is not straight, I can’t sit straight no matter how hard I try to do so, and I wear myself out trying to do so.

I also have Scoliosis (curvature of the spine), Kyphosis (a hunched-forward posture and rounded shoulders) and Lordosis (a larger than normal curve in my lumbar spine) meaning I can’t sit all the way back in my wheelchair.

I have a hip rotation of 60% on my left side and 30% on my right (called a “fixed rotation deformity”) . In medical terminology, my hips are “subluxated,” which means that they are half dislocated.

Surgery was considered to reduce the rotation from my hips to my feet but was ruled out. More as to why in my S post.

I have a 1cm difference in length (which doctors call a” leg length discrepancy” between my left leg and my right one which used to be 3cm, but fortunately has evened itself out as I’ve grown which was what my doctors hoped would happen.

The posture of my hips, feet and legs as well as that of the rest of my body, cause fatigue and pain. More about posture in the P post in my series.

I did actually have braces (Ankle Foot Orthoses or AFOs which supported my ankles, feet and legs) and orthopaedic shoes (Piedro Boots) for some years when I was little to try to position my feet and legs better. but I really didn’t like the shoes because they were very heavy on my feet.

See this post for an idea of what they looked like: https://justkatherineblog.wordpress.com/2015/03/14/my-legs/

The boots were a nice red colour but that was the only thing I liked about them. They were not my favourite shoes at all. The braces had Velcro on them and rubbed against my skin, irritating it.. They were really itchy and hot in warm weather.

Do I have some shoes that I love? You may ask. Well yes I do. I also have some ones with heels. My wedding shoes were black and had a block heel and a small ankle strap. I also have some ankle boots because I love boots. I have black ones, brown ones and even burgundy ones with a gold block heel. When we were in the store looking at the burgundy ones, my husband asked me “Do you really like those and are you sure you’re going to wear them?”.

My answer was “Yes!“. And I have.

In terms of clothes, I have some long skirts but mostly trousers/ pants. I find it hard to buy clothing sometimes because of it looking good from a seated position, but I do have many clothes I love. I know there are websites for wheelchair clothing but they tend to be located in the US and the prices can be a drawback. I have yet to find somewhere affordable.If anyone reading this has any ideas, for sites that ship to the UK and Europe at good rates and have good quality clothing for wheelchair users at affordable prices, please leave a comment.

Fashion is part of my identity and it makes me feel great.

💚World Cerebral Palsy Awareness Day 2022💚

Today is World CP day. As I think back over the last year so far for me, it is clear that it’s not CP that brings me the most challenges, but it is society that makes them harder. We are still fighting for housing and ways to pay for prescribed equipment which is hard. I am all for more affordable housing being built but society has other plans.

For those of you who are new to my blog, here’s a bit about my Cerebral Palsy story. I was born at 29 weeks on December 22 1981 in Kingston Upon Thames, south London with my identical twin sister Natalie. We weren’t expected to survive.

We went through a complicated birth, infections, heart and lung trouble (we couldn’t breathe at all when we were born and were in a very poor condition and so we were in the NICU).

We surived the first 9 days of our lives together, until Natalie became an angel.

When I took my first unexpected breath at 2 weeks old, doctors didn’t know what to expect, for I’d been through a lot already. I was diagnosed with hydrocephalus, which is known as “water on the brain”. It’s a buildup of cerebrospinal fluid which protects the brain and spine. This builds up excessively inside the brain and skull which causes swelling and brain damage. I was diagnosed with CP around this time when the doctors saw I had difficulty moving and was very stiff.

For me, CP causes difficulties with all daily tasks and I require help from others. Find general information about CP here: https://www.scope.org.uk

I have difficulty with concentration, relaxation eating and drinking, swallowing properly, general mobility and positioning, sleeping, spatial awareness and vision as well as stamina, general coordination, grip ability and strength. I have a limited range of motion and have daily pain and spasms and seizures.

I have Spastic Quadriplegia Cerebral Palsy with Hydrocephalus and all this means my muscles are too tight all over my body as well as my trunk and face. I have a powered wheelchair for mobility and I wear strong high prescription glasses. I am registered blind. I have shunts which drain off the fluid from my brain and these surgeries left a lot of scars.

Here’s more information about hydrocephalus: https://www.shinecharity.org.uk/hydrocephalus/hydrocephalus.

I’ll talk about hydrocephalus more in my H post for my Disability A-Z series on my blog.

I have a speech problem called dysarthria which I have talked about before on here which makes my speech slower and makes me stumble over words and sometimes be hard to understand. It also makes me drool too much.

Sometimes, it’s harder to think of words and I can take time to respond. This makes people think I’m not listening when I really am. Extreme tiredness can make me go very quiet and I easily get headaches from the effort my muscles have to make to move, no matter how small the effort.

My intelligence is unaffected but I have a math-related learning disability This makes anything related to numbers difficult.

I love to blog and email and have many book drafts. I would love to be a published author someday. I am still working on that.

I use assistive technology for computer use. For me, this a voice recognition program which is built into my computer. I have used these programs since I was at primary school and they (as well as the physical help from people) helped a lot in me being able to do homework and get my degree.

I love makeup, fashion and beauty and I can speak Spanish. I am married. I did therapeutic horse riding from age 5-17 and horses, as well as cats, are my favourite animals.

This Cerebral Palsy Day, as well as every day, I want people to see they are original and unique no matter how their disability affecs them. If you have CP and have ever doubted your ability to achieve things, I want to say there are ways to study, to learn or to do adaptive sports or what you want to do. I have been discouraged and still do get discouraged, but I know I have a fighting spirit and all of us with CP do. Whatever you’re going through with your CP (and believe me, it does make life interesting!) you have my support.

Remember to keep being you despite your CP and that you should never stop spreading awareness for CP how you can. I spread awareness through my blog, and through what I do each day. Green is the CP awareness colour and I am wearing green eyeshadow every day this month. I’ll be posting tweets throughout the day, including my CP story, on my Twitter account @theglitzqueen. If you like my content, feel free to follow me there.

Although awareness in a day isn’t nearly enough, I do all I can through my blog to show my life with CP, Hydrocephalus and severe visual impairments. I’m happy to be here to be able to do that. I am more than just a person with CP and my other disabilities. I love books and writing (which I enjoy thanks to assistive technology) fashion beauty and makeup as well as movies. I’m married and speak Spanish.

I’m happy to see interest in my blog and thank each and every one of my followers for your continued support.

The green makeup look I wore today was:

Urban Decay Moondust Shadow in Lightyear from the Urban Decay Moondust Palette (2016).

W7 London Rose Mascara in Black

Shade 08 (dark green) from the Kiko Smart Lipstick Palette Shade Selection # 03.

Byphasse Face Mist with Rosewater and Camomile Extract for Sensitive and Dry Skin (used to refredh skin and fix makeup).

I finished the day off by listening to some memoirs by people with CP on Scribd.

For more information about Cerebral Palsy Day, here’s the CP Day site homepage:

Home

Cerebral Palsy Awareness Day 2022

Happy Cerebral Palsy awareness day to everyone in the USA. I always spread awareness for this day although I’m not from the US, as what I am is a person with CP (just one of my disabilities) and I feel the need to support people with it everywhere.

This day comes round so quickly. I remember that this time last year, I was frustrated waiting for my Covid vaccines and a year on I have had my two vaccines and the booster.

I have been wearing green eyeshadow many days this month as green is the CP awareness color. This time, I’m using a green glitter shadow called Lightyear which is from my Urban Decay Moondust palette (the first Moondust palette launched in 2017 which I have had since 2018).

I’m listening to I Came, I Stayed by Arlene Sollis.

Here’s a synopsis:

When Arlene Sollis was born with cerebral palsy in 1935, the doctor advised her parents against taking her home. He said she would never function on her own—that she would be mentally handicapped and unlikely to survive beyond the age of ten. Her quality of life, the doctor said, would be minimal at best, and so he recommended that she be sent to an institution, where she would be taken care of. Her mother refused, instead taking Arlene home with her. And all of the doctor’s predictions turned out to be false. Arlene turned out to be a bright child with a true zest for life. Although she has certainly faced struggles and difficulties in her life, she grew to adulthood and eventually became a special education teacher. She dedicated her life to promoting the rights of all disabled people, receiving many awards and citations for her work. This memoir tells the true and inspiring story of Arlene’s life, following her from birth until the present and recalling her childhood, teaching career, progression of her condition, and retirement.

How are you spreading CP awareness today?

Disability A-Z: C is for Cerebral Palsy

The next post in my Disability A-Z is about Cerebral Palsy.

Cerebral palsy is, has been, and always will be, a part of my life and what makes me me. It’s just one of my disabilities.

It’s the name given to a group of conditions that affect a person’s ability to move and starts in the area of the brain in charge of muscle movement.

There are various types of CP and doctors classify them depending on a collection of factors.

By type:

Spastic Cerebral Palsy is the most common type (roughly 80% of all people with CP have this type). It has subtypes depending on how many limbs are affected.

Spastic Monoplegia affects one limb (mostly a hand)

Spastic Hemiplegia means one side of the body is affected. The arm or leg on the most affected may be shorter and thinner, meaning people walk on their tiptoes. People may also scoliosis (a curved spine) and seizures if they have hemiplegia.

Spastic Diplegia affects the legs more than the arms and causes some difficulty in the arms, but less than in the legs. Spastic diplegia mostly involves muscle stiffness in the legs. Tight muscles in your legs and hips might cause trouble walking because your legs turn in at the knees. This is also called scissoring.

Spastic Quadriplegia affects all four limbs as well as the trunk and the face.

Dyskinetic Cerebral Palsy

Muscle tone which varies between being too tight or too loose. The movements are uncontrolled: slow and twisting, or quick and jerky. If the muscles in your face are affected, you might frown, drool or have trouble speaking.

There are subtypes of Dyskinetic CP too:

Athetoid. Movements are writhing, slow, and curvy.
Choreoathetoid. Movements are aimless and not controlled.
Dystonic. Muscle tone is not normal.

Ataxic Cerebral Palsy

Ataxic CP, which is rare, causes problems with coordination and balance. This causes unsteady walking, shaking and problems with tasks that require steadiness such as writing.

Mixed Cerebral Palsy

People with this type of CP have symptoms of more than one type. Most people with mixed CP have a combination of spastic and dyskinetic.

What Causes Cerebral Palsy?

This is not always clear for doctors, but some of the problems that can cause damage to the brain or disrupt its growth include:

Bleeding in the brain while the baby is in the womb, during birth or afterward
A lack of blood flow to important organs
Seizures at birth or in the first month of life
Some genetic conditions
Traumatic brain injuries

What Are the Symptoms of Cerebral Palsy?

Milestones may be delayed or never reached (rolling over or sitting up to name a few).

Signs can show at birth, but others may take longer to appear.

Babies younger than 6 months:

When you pick your baby up from sleeping (on their back), their head falls backward.
They feel stiff or floppy.
When cradled in your arms, they extend their back and neck, almost as if pushing away from you.
When you pick them up, their legs get stiff and cross over each other (“scissor”).

In a baby older than 6 months:

They can’t roll over.
They can’t bring their hands together.
They have trouble bringing their hands to their mouth.
When they reach, it’s with only one hand. The other stays in a fist.
If your baby is older than 10 months, watch for these signs:

They crawl by pushing off with one hand and one leg while dragging the other side of their body.
They don’t crawl on all fours but scoot instead, or they hop on their knees.

If your baby is more than 1 year old and can’t stand without support or crawl, those are also possible signs of CP.

What Are the Tests for Cerebral Palsy?

CT and MRI. EEG may also help.

How is CP Diagnosed?

Doctors will observe a baby’s development and also take into account their medical history as well as the mother’s because blood incompatibility between mother and baby, twin pregnancies, triplets and more babies being born at the same time are also something to consider in a diagnosis of Cerebral palsy as they are extra risk factors.

Cerebral Palsy is diagnosed anytime between the ages of birth and 3 years old.

How Does This All Relate to Me?

From this information, my diagnosis is Spastic Quadriplegia CP. Some doctors classified it as Mixed (Spastic and Dystonic), but everyone who evaluated me at the time I was diagnosed (birth and shortly after) was in agreement that it affects my entire body.

I was born at 29 weeks with my twin, had severe brain bleeds and a lack of blood flow to my brain and organs as well as multiple infections, collapsed lungs heart problems and jaundice. I also had a low birth weight (2lbs 6oz).

I am registered legally blind as I have 4 visual impairments plus hydrocephalus with VP shunts and use glasses and a powered wheelchair. I require support in every area of my daily life.

My muscles are stiff but weak and my movements are slow and awkward but can also be quick and jerky. I have dysarthria which means my speech is slower than some people’s and can be hard to understand so you need to listen well but I am bilingual too (English and Spanish).

I have some type of pain every day and have muscle spasms and a lack of strength and stamina as well as bad sitting balance and overall coordination as well as hand-eye coordination difficulties and hand tremors. I have other involuntary movements, quick reflexes and also experience seizures.

I tire very easily from the effort of trying to move and my muscles can alternate between being stiff and floppy.

As I always say, CP is part of me but not the whole me.

I hope this post will go a long way in helping spread CP awareness.

March is Cerebral Palsy Month in the USA.

International Day of People with Disabilities 2021: How I Fight for my Rights in the Post-Covid Era

The theme for this year is fighting for your rights in the post Covid era.

I’ve always been a fighter.

I, like many other people just wasn’t prepared for a global pandemic.

I have blogged about my experience of the pandemic and experience feelings of being loved and cared for by my husband but also feelings of doubt, fear and uncertainty.

I’m glad this year is almost over. Before it is, I have something to look forward to: my fortieth birthday and then Christmas 3 days later. We hope to make it the best we can.

This year, I have fought for my rights by getting the Covid and flu vaccines and also continuing to fight to get the best healthcare I can get.

I said this before in my blog post about my experience of the Pfizer vaccine. I urge everyone to get vaccinated. Because vaccination saves lives. Protect yourself to protect others.

I have continued to ensure I have the right medication and also have, and I’m still, fighting for housing and equipment. I am looking forward to having my Covid booster and fight to stay safe by wearing my mask, avoiding crowds and crowded places. I’m also fighting for my rights by living with the hope that some day the places I love and miss will be safe again.

The phrase “the post Covid era” is one I think is not well used, as Covid is far from over but I will always fight for what I need. That means safety stability and to be as healthy as I can within my severe and complex disabilities. I have had problems and still am with getting to trial equipment because of Covid restrictions but I hope that will happen soon.

How are you fighting for your rights in these challenging times? I wonder what the rest of the month will bring.

Enjoy the rest of 2021 and happy 2022 in advance.

Disability A-Z: A is for Awareness

From today, I’ll be featuring a new blog series which will be a A to Z of things related to my disabilities of spastic quadriplegia Cerebral Palsy, Hydrocephalus and vision impairments (hemainopia, nystagmus squint and astigmatism).

Today’s topic is awareness. When I think of the word awareness, the first thing I want to talk about is when I was first aware of my disabilities.

I knew I couldn’t do the same as others. At seven years old, I asked my mum why. She said I was born very early and that I had an identical twin sister. She said we were both very sick and that my twin passed away.

This made me feel sad and like a part of me was missing.

I knew I had pain, spasms and stiffness in my whole body and got tired easily. I knew I had cerebral palsy and hydrocephalus but wasn’t really sure of what that meant. I thought I was clumsy as I had difficulty holding and grasping things and using my hands. I would get frustrated with my feet and ankles which were twisted and the way that my knees touched and almost crossed all the time. I can remember feeling crooked and was tired of being told to sit up straight or take deeper breaths or look at something when I couldn’t track it with my eyes.

One of the good things was that my support workers were people I learned to value and think of as friends inside and outside of school.

Awareness has taken many forms for me. I started with Facebook pages I created in both English and Spanish, but then wanted to spread awareness in another way. I created a blog called Katherine Hayward, My Life with Cerebral Palsy where I blogged about exactly that. I merged my blogs years ago and all those blog posts are now on this blog.

I post in various Facebook groups for people with my disabilities now and then, and find a good community and support network in them.

Why is awareness important? I, as well as many people with different disabilities, have been bullied at different stages in my life. Insults were different, but the most common were “spastic” “slow” and “four eyes”.

It took me some time to understand that I was not at fault but other people were. Awareness is needed so others don’t experience the bullying I did. Awareness is needed as CP is the most prevalent disability in childhood but is still not well understood in adults, in terms of what happens as we age. I have always known that I use 4 times as much energy as those without CP to move and do things on a daily basis.

My awareness of my own body is my awareness of what I can and can’t do. This helps my doctors and people who do and don’t know me relate to me. My awareness of hydrocephalus has helped my doctors too as well as an advocate I met. Living with severe visible and invisible disabilities is challenging and it’s also an adventure.

I encourage everyone to promote disability awareness.

Happy International Physiotherapy/ Physical Therapy Day

While listening to the radio today, I found out that today is International Physiotherapy (or Physical Therapy if you’re from the US) Day.

The Oxford Advanced Learner’s Dictionary defines physiotherapy as the treatment of disease, injury or weakness in the joints or muscles by exercises, massage and the use of light and heat.

As a person with Cerebral Palsy and Hydrocephalus, I grew up with doctors recommending this to help me with my strength, stamina range of movement and high muscle tone.

As a baby, I had physiotherapy sessions at home and then as I grew the sessions were at school or a Paediatric Assessment Center. I was taken to therapy in the therapy pool and my earliest sessions were that therapy and exercises focused on head control.

My other therapies were eye patching therapy to help strengthen my eye muscles and help me turn my eyes outwards as I had crossed eyes as a baby and was diagnosed with bilateral sixth nerve palsies which mean that the abducens nerve, the cranial nerve in charge of turning my eyes outwards, is paralysed. I have tunnel vision and no lateral vision because of this. I also have bilateral squint, (strabismus), nystagmus (uncontrolled involuntary eye movements) astigmatism and hemianopia (blindness in half of both eyes with a severely reduced visual field for remaining vision).

No therapies will help these eyesight difficulties since they are all caused by the damage to my occipital lobe (the vision area of my brain).

I had physiotherapy in the form of stretches for my movement. limitations.

In terms of my hydrocephalus, the therapy and advice took the form of recommendations for head and neck positioning when sleeping, since my symptoms of shunt blockage or malfunction were a very bad headache after having been asleep for a few hours and as a child I would typically wake with nausea, vomiting dizziness and disorientation at any time between midnight and 2AM which my doctors told my parents was a classic symptom of raised intracranial pressure. I would otherwise be sleepy and not very responsive.

I was diagnosed with hydrocephalus when I was two weeks old after grade 4 (severe bilateral brain bleeds).

I was born at 29 weeks, one of identical twins.

My Cerebral Palsy diagnosis came soon after and doctors and therapists focused my therapies on my whole body since I have spastic quadriplegia which affects my arms, legs and trunk as well as causes weak muscles on the left side of my face and some difficulty with swallowing pills and with eating different textures of food as well as the need for an adapted spoon, plate and cup.

My balance, strength stamina and coordination are also affected. I have subluxated (half dislocated) hips and I have scoliosis (a curved spine), kyphosis (a hunched posture) and lordosis (a larger inwards curve on my lumbar spine than is normal). My hips have a rotational deformity and this affects the position of my knees and feet. I have high foot arches which are a foot deformity associated with Cerebral Palsy and my feet turn inwards. My ankles are very tight and I can’t move my toes.

When I was diagnosed with my disabilities, most people who saw me talked about spastic quadriplegia as my diagnosis and some talked about mixed CP because of the balance and coordination issues (which are usually part of ataxic CP). Dystonia was also mentioned as I have involuntary movements.

My experience of physiotherapy is that I was always nervous about the sessions as I knew the stretches would be painful for me because I can’t relax my muscles by myself. I also knew that telling people I didn’t want to do my therapy would not help me, so I went to my sessions.

When I was five years old, therapeutic riding therapy was prescribed by my doctor and I went to two specialist riding schools between the ages of 5 and 17 for which there were long lists. These were part of the Riding for the Disabled Association (RDA) which is a UK organisation that helps to bring together a network of specialist horse riding schools so that children and adults with disabilities can learn to ride and learn about horse care. There are people to physically help the riders too. I have fond memories of this therapy and horses are still my favourite animals.

As an adult, I have had massage therapy and we have an infra red lamp which we use for pain relief and relaxation. This really does relax me and makes me sleepy. Other heat therapy I have is using a hot water bottle in bed in winter or placed near my feet to help my circulation.

I have therapy bands although I am unable to stretch them myself as well as a soft ball to hold in my hand and try to squeeze (I haven’t quite mastered squeezing yet).

I have had a lot of different kinds of physiotherapy in my life and am fortunate that my husband is able to keep doing that with me. The stretches will be necessary for the rest of my life.

I was encouraged to find activities I enjoy and I would encourage anyone to do the same. I love being in the pool. I have fond memories of my horse riding days.

Any kind of exercise tires me out but that’s just the way my body reacts.

It’s not unusual for me to have pain, muscle spasms and involuntary movements during exercise or afterwards and I can even be sleepy.

I have slept for hours in the past after therapy sessions at my local hospital. In my experience, sleep is healing, too and a good compliment to exercise.

#CaptainTom100 Day 4: 100 Things About Me

We’ve reached the end of the #CaptainTom100 challenge and I have to say I have really enjoyed it.

Want to know more about me?

Here are 100 things:

1.

1. I’m bilingual (English and Spanish)
2. I was born at 29 weeks
3. I was an identical twin
4. I have Cerebral Palsy, which in my case means my muscles are too tight throughout my body
5. I have hydrocephalus with 2 shunts to drain the fluid that protects my brain and spine as my body cannot do it itself.
6. I have worn glasses since age 2
7. I have two electric wheelchairs, one is purple and the other is black
8. I love cats and have known two as pets in my lifetime
9. I love pizza (especially pepperoni or chicken)
10. I studied Spanish German and Geography at GCSE and A’-Level and passed
11. I would love to do a creative writing MFA
12. I was top of the class in Spanish through secondary school
13. I had a hamster named Toffee when I was little
14. My favourite celebration drink is champagne
15. I have a Geography degree
16. I am a shopaholic
17. I love makeup
18. I love clothes
19. I would love to be a mother one day
20. I smile a lot
21. I am kind and approachable
22. I always do my best to help others to the best of my abilities
23. I have a lot of empathy for others and feel bad if I can’t help them
24. I had many brain surgeries before I was 11 years old
25. I love shoes
26. I love purple
27. I am a good listener
28. I love gold
29. I love pink
30. I love glitter
31. I am a loyal friend
32. I value those who value me and reject those who do not
33. I do not like conflict or injustice and will always fight this (I let people know when they are wrong)
34. I am honest
35. I give every task 100%
36. I have nystagmus
37. I have hemianopia
38. I have a squint
39. I have astigmatism
40. My favourite boy band as a teen was The Backstreet Boys
41. I have many Songs by Eternal
42. I love popcorn
43. I love the Grease movies
44. My favourite musicals are Grease and Sister Act
45. My wedding dress was a purpley pink colour and had tulle layers
46. My wedding ring has 11 diamonds
47. I got engaged on my birthday in 2008
48. I almost chose Christmas Eve 2018 as my wedding day but did not want to be too cold in my wedding dress.
49. I love the smell and look of leather
50. I love TK Maxx
51. I love Mango (clothes shop)
52. Watermelon is my go-to summer fruit
53. I am addicted to eyeshadow
54. My laptop is gold
55. My phone cover has a picture of a makeup palette on it
56. I love the sunshine
57. I love leopard print, zebra print and snake print
58. I own the entire Friends BluRay box set and Sex and the City DVD boxset and I want the one for This is Us
59. My favourite cocktail is a Cosmopolitan
60. I adore charcoal eyeshadow
61. I hate the cold
62. I have been to Clothes Show Live and went as part of my “Many Things I Want to Do” for my 30th birthday celebration, spread throughout December 2011
63. I love metallic colours
64. My wheelchair is purple
65. My favourite high end makeup brand is Urban Decay
66. My favourite budget makeup brand is Wet ‘n’ Wild
67. My favourite brands for affordable makeup dupes are W7 and Wet ‘n’ Wild
68. I am a “Revoholic” (fan of Makeup Revolution)
69. I started therapeutic horse riding at the age of 5 and stopped at age 17 to go to university but my love for horses has never left me
70. I love roses
71. I dictated my first book in 2013 and have different ones in different genres now which I would love to publish
72. I have done and won NaNoWriMo every year since 2013
73. I have done and won Camp NaNoWriMo every year since 2014
74. I love the summer
75. I love Christmas
76. I love chocolate
77. My favourite chocolate brand is Galaxy
78. I love cookies (especially those from Millie’s Cookies)
79. My favourite ice cream is Ben & Jerry’s Chocolate Chip Cookie Dough
80. I love audiobooks
81. I’m a NetGalley reviewer
82. I’m a Trekkie
83. I have a pink Nintendo DS
84. I would love to be a published author
85. I love french fries as well as healthy eating
86. My two favourite book genres are women’s fiction and romance
87. I have a sister
88. I have a nephew
89. I love pretzels
90. My favourite winter drink is hot chocolate (regular hot chocolate, white hot chocolate and with marshmallows)
91. I love London
92. I adore Spain
93. My favourite perfume brand is Chanel
94. I love white wine
95. I would love to do a coast-to-coast road trip in the USA.
96. I love anything coconut-scented or flavoured
97. My favourite movies are true-to-life family dramas as well as realistic, relatable romances
98. I love fictional medical documentaries or true-life ones
99. ER is my favourite fictional medical drama and I have always wanted to meet the cast
100. I am a hopeless romantic