disability – Just Katherine

Memories of Naidex

Naidex is a disability exhibition in Birmingham, England.

I’ve been a few times in my life and all the times have been enjoyable.

The last time I went was around a decade ago. I went with my mum. We booked tickets online and entry is free.

More about Naidex here:

https://www.naidex.co.uk/visit/

I tried to plan where I wanted to go but the online plan of the stands wasn’t easy for me to see. I thought “just turn up and see where the day takes you.”

The people by the desk in the entrance hall were welcoming and friendly.

At the time, I was searching for a new powered wheelchair and I knew that two companies whose wheelchairs I was interested in were going to be there: Pride Mobility and Permobil.

The people on these stands were friendly, too. I talked about what features I needed on a wheelchair and they showed me some models. Unfortunately, they had to show me from my wheelchair as they told me they weren’t authorised to help with transfers. I did ask “well, can’t you ask around, maybe someone from a nursing or care company can help?” I knew there were many different companies at the exhibition. Then, they said “we don’t know who will lend us a hoist (Hoyer lift) and sling.”

I fleetingly wished one of my carers could have come with me but at the time that wasn’t possible.

Disappointment aside, I enjoyed seeing the powerd wheelchairs.

Find out more about Pride Mobility here: https://www.pridemobility.com

Permobil was a stand I was very excited to be at. I spoke to a technician who said the same thing about not being able to help with transfers and so I looked at the four wheelchairs parked in a line in front of me. A person was in one and so I saw all the electrical features and the wheelchair itself on the move.

Find out more about Permobil powered wheelchairs here: https://www.permobil.com/en-gb

The technician noticed my disappointment at not being able to trial a wheelchair and gave me his business card to arrange a home visit and trial.

I went to a stand that had hoist slings as the one I had was one I felt unsafe in (I had fallen out of it more than once with inexperienced carers). I saw some I thought would be better and more supportive.

I found the Bakare Beds stand and they sell bespoke electric adjustable beds:

Electric Profiling Beds, Mobility & Medical Beds

The last stall I went to was Canine Partners, an assistance dog company.

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.

Bloganuary Day 21: What Year Would You Time Travel To And Why? #bloganuary

Time travel has interested me ever since I saw my first episode of Star Trek: The Next Generation as a teenager. I loved the show as, for me, it was pure escapism and allowed me to travel to an unknown stardate and get a glimpse of the future from the viewpoint of different characters and species.

I still like the show and the idea of time travel. Movies that have made me think were The Time Traveller’s Wife and In Time.

I’m not exactly sure what year I would time travel to but I have always hoped for a future in which the following will happen:

There will not be a shortage of housing for anyone and especially those of us with disabilities

All homes will be able to be controlled via switches and adaptive technology and this will be installed when the homes are built.

When the rights, wishes, wants and needs of people with disabilities are met by service providers and social services without question. Because I, and many others, have had to explain time and time again and been misunderstood too many times.

When the prices of essential equipment and aids will not exclude people from getting them, or make getting them more difficult.

When humanoid robots will be available to help those who need them to help in their lives and this way no elderly person will have to be alone and no person with disabilities or support needs will be vulnerable.

Most of all I dream of the day when those of us with disabilities truly are equals and when there is real equality between people with disabilities and without them.

Until then, I will keep fighting and hoping.

International Day of Acceptance: More Than A Day.

I have been posting here about International Day of Acceptance for years. I have shared whatever my thoughts were every year that I have posted, and I have shared my experiences of disability and 3E Love’s Wheelchair Heart, the company who came up with this day.

I have always felt we need more than a day of acceptance, because those of us with disabilities go through so much all day every day, and the acceptance in society should reflect the understanding of that. I am still dreaming of a society in which everyone is accepted.

I have found acceptance in my husband Alfredo.

I was wondering what we’d do today. I wasn’t sure and then he suddenly suggested we go back to our search for my wheelchair accessories. A few hours later and we had our list.

When trying to describe my posture, he said “you either slip to the side or front when you’re sitting. I know, I see you.” It’s nice to have him be observant when I am concentrating so hard on just trying to sit and keep myself in my wheelchair.

He accepts me and is helpful and honest. He doesn’t feel overwhelmed by the fact that I need what I do and will do his best to help me get it.

I am very happy with what we did today.

Bloganuary Day 16: What Cause am I Passionate About? #bloganuary

I am passionate about raising awareness of my disabilities, Cerebral Palsy, Hydrocephalus and Visual Impairments. This ties in with my #bloganuary post for day 1.

I have always supported Scope https://www.scope.org.uk and ASPACE. https://www.aspacemadrid.org

I support Scope by using their forum and I am working on the final draft of a guest post for their forum.

I also support Shine Hydrocephalus Charity because they supported me in life. I post about Hydrocephalus and how it affects me on my blog as well as Hydrocephalus and Spina Bifida Awareness Day/Week. https://www.shinecharity.org.uk

RNIB is another charity I use the website for when I want to raise awareness of visual impairments. https://www.rnib.org.uk.

Disability A-Z: B is for Balance, Bruises and Baclofen

Welcome to the second blog post in my “Disability A-Z” series.

Balance is something that is very difficult for me. Balance can be affected in people with spastic Cerebral Palsy which I have (meaning my muscles are always too tight). Balance is also difficult for people with ataxic CP.

I remember that during my last sitting assessment the technician asked me to sit in my wheelchair without trying to hold onto anything.

The result was me falling forward and almost out of my wheelchair. This left me shaking like a leaf and having a lot of muscle spasms (more about those in another post). The technician apologized for having to do that test but he knew from that that I needed supportive seating. I’ll talk about my seating in another post too. It has molded sides to keep me in place.

To help you as my reader understand more about my balance issues, I’ll explain more.

Cerebral Palsy has not left me with symmetric postures. My pelvis and hips are rotated too far inwards and that means that my knees, legs and feet are not straight. This means that sitting is difficult because it means I lean to one side and slip forwards. I have a special wheelchair cushion to reduce pressure sores and provide positioning.

I also can’t keep my feet on my footrests because the stiffness of my muscles pulls them into the wrong position and have had various adaptations made to those throughout the years, including a larger base of the footplates, footplates with built-up sides so my feet don’t fall off or back. I had Velcro straps to hold my feet in place. My spasms and involuntary movements (there they are again) are strong so they broke the Velcro.

I spent a lot of time at the Orthotics department for different leg splints and I was constantly having my legs measured because my left leg is shorter than my right. The difference is 1cm now but it was as much as 3 when I was little.

Balance also affects sensations and I have the constant feeling that I am going to fall, whether I’m in my wheelchair or in bed. My body will jerk suddenly if I’m turned on my side and I will have nausea. I will also be stiffer than usual which will cause more pain.

I bruise easily and always have done. I was born severely bruised because of a difficult birth and my sitting balance means I fall in my wheelchair and bruise myself when I do. Spasms, involuntary movements and seizures mean more bruises for me, too.

Medical tests are difficult and blood draws leave me bruised for at least a week or more afterwards. I was left with bad bruising on the inside of my elbow as I wasn’t moved properly after having a general anesthetic for an MRI. People knowing how to move me is very important.

I take a muscle relaxant called Baclofen to help reduce spasms from my CP.

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 Spina Bifida and Hydrocephalus Awareness Week 2021

This week is Hydrocephalus and Spina Bifida Awareness Week. The last time I blogged about it was in 2018.

If you don’t know my hydrocephalus story yet, find it here: https://justkatherineblog.wordpress.com/2015/10/22/my-story-growing-up-with-hydrocephalus/

This week, I will be wearing yellow as it’s the awareness colour for hydrocephalus. I have yellow eyeshadow. Please help to do whatever you can to raise awareness for hydrocephalus.

I’m particularly grateful to Shine Charity (formerly ASBAH) who helped me through some hard times and were always there to listen and advise.

The things I have done to help raise more awareness for hydrocephalus have been to blog about it now and then on my blog. I have shared my story and advised families on Facebook and I’m always ready to share what it’s like to be me with not just hydrocephalus but also Cerebral Palsy and 4 visual impairments.

I give thanks for each and every day I don’t have hydrocephalus symptoms and that my shunt is working.