Disability A-Z: J is for Joystick 

Wheelchair controls are something that I take time to think about, and they are something that I have to think about a lot. The standard control is a joystick, and it’s one I have a lot of problems with. This post is about that as well as types of wheelchair controls.

Wheelchair controls are proportional and non proportional.

The joystick is a proportional control . This means the speed of movement is proportional to the strength you use to move it. If it is pushed a little it will go slow and if it’s pushed a lot it will go fast. Like many people with CP and other disabilities that are neurological, I have difficulty grading my movement and force. This means a proportional method of controlling a wheelchair is not good for me.

Non-proportional controls are ones where the wheelchair is operated through switches to control the wheelchair and are better if a person has more difficulty controlling their movements to be precise enough to use a joystick.

This article explains more: https://blog.gtk.com.au/power-wheelchair-controls-proportional-vs-non-proportional

My problem with using a joystick as a control for thimgs started when I was in an OT evaluation decades ago, and the OT was trying to help me find a way I could control the mouse for my computer. We tried a joystick control and I couldn’t get the hang of it. My problem is the range of movement in my wrists and the lack of strength and precision in my fingers, hands and arms.

I found this exhausting. The wheelchair joystick is exhausting for me not just because of this but because my fingers slip.

I have tried a lot of joystick adaptations: a small hard ball, a longer joystick, and a soft ball but nothing has worked. It’s difficult to use because I have a lot of trouble with maintaining pressure or sustaining a purposeful movement, and trrying to use a joystick just doesn’t work for me so I’m searching for an alternative control. Fortunately there are lots: a touchscreen without a joystick, and a huge variety of other controls.

Although my head control is only partial, I was advised that a non-proportional control is going to be the best option for me, and possibly a head array, which has switches mounted in the headrest. The cost is a concern, but I hope to find an alternate control to a joystick.

A Busy Day, Giggles and My Experience of Flu Vaccine 2022

Today, we went to get our flu vaccinations. I knew the vaccinations were happening on the first floor and we were slightly anxious about how getting to that floor would go, since the times I have been, the wheelchair platform lift wasn’t working well. We are used to this happening, so hoped the appointments went well.

We left quickly to get to the appointment and so weren’t able to do my arm stretches beforehand.

We arrived and waited until our names were called. We explained about the past access problem and the admin assistant we talked to offered to get a nurse to come to where we were so we could be vaccinated. They said there had been problems before with the wheelchair lift. We said we were the people who had had problems with it not working.

Then we joked around for awhile about how fragile some of the lifts are and how the admin worker said he wouldn’t want me to break the lift with my wheelchair and how my wheelchair is a real “tank”. Once I’d stopped my giggles which went on after the joke was over because then Alfredo started joking around, it was time to “get down to business’ and go get the vaccine.

Another nurse who was nearby asked what we needed and we explained that we were there for the flu vaccination.

She said she was a pediatric nurse but was also helping out with vaccinations because of the healtcare worker’s strike.

I was the first to be vaccinated. She stretched my arm and massaged it a little and the needle going in was a little painful and took me by surprise so I could feel more spasticity and involuntary movements.

Once we had both had the vaccine, I could feel my arm was sore and it was for a few hours afterwards, as was where the needle had gone in.

I’m so happy that the staff at our local medical centre are helpful.

We found a pretty looking Christmas tree and Alfredo took a photo of me by it (photo to come), There’s more and more Christmas food in the supermarket but we have decided that we’ll eat or usual turkey with roast potatoes, vegetables and gravy,

We bought some wine for my birthday which is on the 22nd. The cold weather is making the skin on my hands drier so I bought a hand cream which is more nourishing.

We went to a wheelchair dealership in our next step in the ongoing search for someone to help with getting my prescribed wheelchair accessories. I wasn’t sure we’d get my wheelchair into the store but we did. I started giggling again and Alfredo said “Katherine, concentrate otherwise you’ll fall out of your wheelchair”. We had shopping bags on the handles and had to negotiate some artificial grass between the street and the store. Grass of any kind is hard in a wheelchair even a powered one. We eventually got in and the lady was helpful there, too. The waiting game for a skilled technician is still on and hopefully we’ll have luck this time.

It was very cold and cloudy but I had my new boots on and so my feet weren’t cold at least which is amazing because my circulation is terrible.

The last thing that made me giggle yesterday and both of us laugh a lot was some of our shopping falling off my wheelchair before we even got home, and we were glad to be home after all that.

Disability A-Z: I is for Intracranial Pressure, Intracranial Pressure Monitor, Involuntary Movements Intelligence Ignorance and Imagination

I was a letter I was thinking about a lot, and one for which I was wondering what themes to pick. I knew there was going to be some repitition in this ost, but where awareness and knowledge is concerned, repitition is a good thing.

In my H post, I talked about my hydrocephalus and how hydrocephalus is an increase in brain pressure. Apart from my shunt, I have also had an intracranial pressure monitor. This is a small monitor which is implanted in the skull to check for raised pressure. It was suggested for me after I was getting frequent and severe headaches despite my shunt. The monitor meant I had to have yet another surgery and it has left me without part of my skull. I’ll talk more about that in my S post.

Cerebral Palsy has caused lots of things in my body and one of those is involuntary movements. My feet will move involuntarily on my wheelchair footrests and I have hand tremors (more about those in my T post). Any part of my body can move involuntarily, and I can hurt myself. My eyes move constantly in an involuntary way because of nystagmus (more about that in my N post).

I have met people who question my intelligrnce and start talking to me slowly or as if I’m a baby or who will talk to the person next to me instead of me. I do my best to get them to listen to me, but sometimes they don’t. I feel it’s their problem if they don’t want me to. Ignorance is something I really don’t like. If you’ve been reading this A-Z or my blog so far, you’ll know that I always aim to reduce the amount of ignorance there is around people’s knowledge of CP, Hydrocephalus visual impairments and other disabilities.

Ignorance, and saying people are ignorant about something, is not meant as an insult, but rather as an opportunity for the person to become more aware and accepting of those of us with disabilities.

One thing that has helped me in life is my imagination. From an early age, I felt I was a dreamer and had a good imagination. I used this when I tried to meet and get along with people, to defend myself from bullies, and to try to solve problems in life. I used it with schoolwork and university assignments and later with novel and short story drafts. I still have to use it a lot. I’m proud of my good imagination as it makes life interesting and can help when there’s an extra challenge in the way, which there often is, not just because of my disabilities but with life in general. Improving my ability to use my imagination in the way I think is right no matter what anyone says is how I overcame my problems with self confidence. More about my journey with those in my S post.

International Day of People with Disabilities 2022

Today is the International Day of People with Disabilities. This year, the theme is:

Transformative solutions for inclusive development: the role of innovation in fuelling an accessible and equitable world.

The transformative solutions in my life so far are:

My shunts to help hydrocephalus. It will never cease to amaze me how innovative these are If I didn’t have them, I wouldn’t be here today. There’s always a risk they will fail or malfunction and I know I’ve had experience of this happening repeatedly during the first 11 years of my life. Every day they don’t is a gift, as when they do fail or malfunction I am seriously ill and hospitalized for long periods.

My wheelchair which has a lot of things to help me already (tilt, recline and seat riser as well as legrests which are all electrically controlled and help with positioning and activities). Further innovations are the alternative options that can be added onto it.

Positioning belts, harnesses and foot straps.

Equipment such as an electric hoist/ Hoyer lift, an adjustable bed and shower wheelchair.

My computer and iPad, which can be controlled with just my voice.

Voice recognition software and dictation programs which allow me to produce novel drafts on my own and helped me produce schoolwork and university assignments.

I like the way that innovation to help those of us with disabilities is always occurring, but feel that to be truly accessible. the innovative products need to be priced so people can afford them more easily. This phenomenon is known as the disability price tag, and is something I’ll talk about in another post.

Innovation must not just be limited to mobility and assistive technology products, it must be available in all areas of life, from housing to healthcare access and beyond.

I stil feel the world has a long way to go until it is truly accessible and equitable. Even if progress is made in every area of life a person may need, what really needs to change are attitudes towards people with disabilities. Only then will true access and equality have been achieved. This is why I raise awareness of my disabilities, as people need to know more to understand more and be more accepting and inclusive of those of us with disabilities.

I have had to face a lot of misunderstanding and ignorance in my life surrounding my disabilities, and I still do, but when someone understands and helps, it’s a great thing.

I hope and pray that I’ll experience this in my lifetime, but for now I’m still fighting, and will never stop doing so.

Find out more about the International Day of People with Disabilities 2022 here:

https://www.un.org/development/desa/dspd/2022/10/international-day-of-persons-with-disabilities-2022/

Happy World Prematurity Day 2022

Today is World Prematurity Day and I’ve been spreading awareness about it for some years. I was born 11 weeks premature, and weighed 2 lb 6 oz. I was born with my identical twin sister Natalie in Kingston-Upon-Thames, an area of south London in England.

Every time it’s world prematurity day, I feel happy to be here given what I went through at birth. Natalie went through the same, but she passed away.

Today, I imagine us, tiny babies fighting for our lives in the NICU at first Kingston Hospital and then Queen Charlotte Maternity Hospital.

Our births were spontaneous, and the fact we were two babies instead of one was unexpected. I am the baby who was the “surprise”.

The consequences of prematurity for Natalie and I were many:

We were in a very poor condition when we were born.

We weren’t breathing at all and so went straight on life support.

We had heart and lung complications, and our lungs collapsed.

Our hearts stopped on Christmas Day and we had to be resuscitated and baptised in an emergency service.

Natalie’s heart stopped again and the further consequences of prematurity for her were kidney failure and organ failure until she lost her fight for life on New Year’s Eve 1981.

The consequences of prematurity for me were more related to my brain, muscles, and ability to move.

I had severe (grade 4) brain bleeds on both sides of my brain which caused swelling and hydrocephalus and Cerebral Palsy. I had many eye infections in the form of conjuntivitis.

I have often asked myself how the consequences of prematurity would have shown themselves in Natalie had she survived. It’s not really known, and the word most used in my family was “probably”, like she probably would have needed dialysis for her kidneys.

The theme for World Prematurity Day this year is a mother’s hug. I do know that my parents visited Natalie and I every day in hospital, and that we were in incubators and in the NICU. I’m not sure when we had our first hug or when we were allowed to be held for the first time. I have heard of skin to skin contact from the time a baby is born and the value of that to get a mother and baby bond.I think it’s a good therapy.

Here’s more information about World Prematurity Day this year. Purple is the awareness colour for prematurity and it’s my favourite colour.

Disability A-Z: H is for Hydrocephalus, Hemianopia and Head Control

TRIGGER WARNING: major brain surgery, unintentional vomiting, NG tubes IVs.

Hydrocephalus:

I was diagnosed with hydrocephalus when I was 2 weeks old. It was the result of my premature birth as well as severe grade 4 brain bleeds on both sides of my brain.

I have what’s called a shunt to control the increased cerebral spinal fluid since hydrocephalus means I can’t control it myself. I had my first shunt fitted at Great Ormond Street Hospital in London. I was very ill during the procedure, and what would have been quicker ended up taking five days. I needed a blood transfusion before it and NICU care afterwards. But…I survived.

There were some surgeries after this, and then some more. Here’s what I know about my surgeries and hydrocephalus symptoms:

Age 6: I was vomiting and lethargic and had headaches. The tubing in my neck was broken.A doctor said he thought it was the flu, but then realized it wasn’t.

Another surgery and I ended up with 2 shunts as it was deemed too risky to remove one of them which was later called “redundant” (not in use) as doctors feared my already very severe disabilities would become even more severe if the extremely delicate surgery to remove the shunt went wrong. The broken tubing in my neck was removed and a new VP shunt and tubing was connected.

Age 11: I had headaches and had an Intracranial Pressure (ICP ) monitor fitted for 24 hours, during which time I was lying on my back on the hospital bed, with my head taped to the pillow and was instructed not to move.Not moving is not easy with my hand tremors, involuntary movements, spasticity and startle reflex.

I was fed through an IV and the alarms on the machine would startle me day and night and keep me awake.

I ended up having to have surgery at this age, too. I remember a lot of things from this time. We lived in Wallingford in Oxfordshire, and the nearest hospitals were in Oxford. The hospital I was in most was The Radcliffe Infirmary, but when I was 11 I was in The John Radcliffe Hospital.

I’d been having headaches and so we went to see my neurologist. I’d been having nausea and vomiting and was not feeling great. My head was throbbing. I felt sleepy and lethargic. These symptoms were classic hallmarks for me and hydrocephalus problems. I’d go to sleep then wake around 2AM crying loudly because the increased intracranial pressure headaches were the worst I’d ever felt.

I still remember mum packing an overnight bag just in case. We went to see my neurologist, went back home.

I remember when the call came, how mum said “We have to go to the hospital.” So, back we went. I remember taking my Forever Friends soft toy (a brown rabbit with pink inside its ears). I also sometimes bought a white seal soft toy with me as I loved it’s jet-black eyes and soft white fur.

I still remember the sterile ward and the antiseptic hospital smell, how I’d try to hold the soft toy and how much the IV in the back of my hand hurt, and made the spasticity in my hands even worse. I still don’t like IVs for this reason. I didn’t like a lot of things in the hospital: the blood tests, the over-sweet bright orange medicine. Being poked and prodded by doctors and nurses. Not being able to eat and drink. Longing to eat and drink what I wanted. I knew the hospitals were’t far from the shopping area, and I wanted to go there or to the movies. The hospital was the last place I wanted to be.

I remember mum sleeping on a folding bed in my room, and a visit from my grandparents Patricia and Terrence. I remember how they were walking towards me and I wanted a hug but they couldn’t give me one because I had to be as still as possible to “help my brain adapt to the shunt”, as doctors and nurses said. I felt nervous and scared, like my body would reject the shunt.

I felt I wouldn’t ever get out of hospital. that I wouldn’t eat again or need a feeding tube in my stomach as there was some talk about that. NG tubes still scare me to this day, and I pray I never need another one. I thought a feeding tube was a better option as NG tubes made me gag and almost vomit when they were being put in and they had to be put back in every time I did vomit.

The nausea and vomiting from hydrocephalus was so bad I had a sign by my bed: NIL BY MOUTH. I’d been hospitalised enough for hydrocephalus by this time to know what that meant: that medical professionals could not give me ANYTHING to eat or drink and so I had food and medication through an IV.

I remember how even the smell of food would make me feel bad.

Not much could cheer me up, and I felt bored. I felt like I was the “complex case” one doctor said I was, and ike everyone wanted to study and observe me. I felt glad I didn’t have the deformed tall “steeple skull” I had when I was a baby. I still felt very different from everyone else. I felt like I was the only person in the world with spastic quadriplegic Cerebral Palsy, hydrocephalus and severe visual impairments. In my frustration, I’d get angry with the nurses, say everything wasn’t fair, and, I don’t know how I managed to pull out my IV on my own, but I did.

There were times when I’d cry and feel sorry for myself and feel uncomfortable because my muscles were too tight and were tighter still when I was exhausted or in pain. I didn’t like the extra dizziness and disorientation as my brain and body tried to get used to the new shunt.

The person who saw me for me was Ciro, a boy whose Italian family lived in Oxford. He had cancer, and he loved board games. I didn’t, but he’d want to play Connect 4.

I would use a scraping motion to try to get the red and yellow disks in my hand as a pincer grasp was too hard. I would spend more time dropping the disks (and startling myself when I did) then struggling to pick them up again. Ciro would pick them up, make a line after he asked where I wanted them and he’d let me win sometimes.

Then, one day, Ciro wasn’t there. I found out he’d passed away and I felt so sad.

I felt really self-conscious most of the time because I was the girl with CP and hydrocephalus and shunts in her brain. I was uncoordinated and struggled with strength, stamina, movement, posture and vision.

Now, I’m 40 years old, and happy to say I haven’t had a shunt surgery since I was 11. I have learned to self-advocate for hydrocephalus over the years. My shunt is still working well and has been for 29 years now.

Hemianopia:

I have a vision impairment called hemianopia which is complete blindness in half of both eyes and a severely reduced visual field in the rest of the eye. This causes difficulty focusing my eyes, difficulty with night vision, double vision, difficulty understanding what I’m seeing, vision that appears dimmed. I also move my body and head to try and see. It can also cause visual hallucinations. I’m registered legally blind because of this and my other visual impairments (nystagmus, strabismus and astigmatism).

Head control:

I didn’t have any until I was two years old, and my neck alternates between stiff and floppy. I have involuntary movements, spasms and pain in my neck. My head often ends up on my chest and I cannot put my head back to reach my headrest on my wheelchair whether I am sitting or lying in my wheelchair (when it’s tilted and reclined), so I need physical help to do that. Much of the time, my head feels heavy and I get headaches and dizziness easily from the effort of moving it.

I hope you enjoyed my H post.

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.

International Library Day: My Experience of Libraries (and Some Favourite Books)

I didn’t know that today, the 24th of October, is International Library Day. I found out from the news on TV. You learn something new every day.

I’ve known various libraries in my lifetime. Our library in Wallingford, Oxfordshire was hidden away amongst other buildings set back from the High Street.

There was a kids’ corner with different books which I liked when I was little.

As a teenager, my book choices were the teen book series Sweet Valley High, about the blonde haired, blue eyed Wakefield twins, Jessica and Elizabeth and their adventures in life and love. They were so popular the books were hard to find and always being borrowed by other people. I also enjoyed the Point Romance book series.

I had other books at home, such as the Wild Hearts series by Cherie Bennett (I loved the clothes and the music and the bright, colorful covers with hearts on them as well as the romance). I was overjoyed when I found books 5 and 6 online as an adult.

The Babysitter’s Club by Ann.M. Martin, was a huge series I have never been able to collect all the books from, and I started at age 12, but I was glad to have some. These also had good bold print I could see.

I one day decided I was “too grown up” for them when I was 15 or 16 and sold most of the ones I had for £5 at a garage sale me and my sister had. BIG MISTAKE: years later, I regret this, but they are fortunately available as Kindle ebooks.

The Making Out series by Katherine Applegate (called Boyfriends and Girlfriends in the US) as well as the Making Waves series, also by Katherine Applegate. These were the only large book series I ever managed to almost completely collect, and some books were so used that I my dad bought me other copies of them years later.

My biggest bargain was a used book I thought would be in a good condition but when it arrived, my husband told me it had a Tipp-Ex stain on the front cover. I felt with my fingers and sure enough, there it was. I was devastated: it was book 28 in the Making Out Series and I had finished it. I was already sad at such a great series coming to an end.

I have never forgotten the kind bookseller who let me keep the book and gave me my money back. I could not bear to part with this book as I had to know how the series would end. The bold type was one I could see if it was very close to my eyes, held in a book holder stand I had, and for this I was grateful.

I wanted, (and still want) Chatham Island off the Maine coast to be real. I wanted to meet Zoey, talk to Ben about sight loss, discuss the weather with Claire, talk dark lipstick colors and cool hairstyles with Nina, stay at Aisha’s parents B&B and go out on Lucas’ boat. I wanted to get to know Christopher and have a meal at Zoey and Ben’s parents restaurant, Passmores. I wanted to get to know Lara despite her troubled past. And I want to know more about Kate, who, to me, was always a bit of a mystery.

My favourite series about horses were The Saddle Club books (some of which I found in the library) and the My Friend Flicka trilogy by Mary O’Hara.

Other libraries I visited were in Didcot, Oxfordshire. I went to secondary (high) school in Didcot, and used the library there but mainly as a quieter place to do my homework and this was useful for the times I needed extra help from my classroom assistant/caregiver.

One of the best things about visiting my Gran in Gerrards Cross, Buckinghamshire, were the times she’d take my sister and I to her local library, where she’d borrow books herself. I felt I had a lot of books, but we rented DVDs from there. It was always interesting to explore the libarary there.

Once I got to University, I used the library at The University of Wales, Swansea. One thing I remember about that library was asking someone to put the María Moliner Spanish-English dictionary, which my then-Spanish teacher insisted we used. Dictionaries, just like many books and due to heavy weight and their small print, are impossible for me to use. I was good enough at Spanish that I didn’t really need one.

When, at age 19 I transferred to Reading University, I used the library there. I have fond memories of the tall brick building with windows on all sides looking out onto Shinfield Park, home of Whitekinights Campus, the same campus I lived on in my first year. The campus had lots of green areas and lots of trees, plus a lake on the other side of the campus. I remember wishing the lake was near the library so I could look down on it from the library window.

The library was my quiet place to observe the trees and the view of the campus as I thought of ideas for my assignments or just daydreamed about what I’d do in my free time between classes or at the weekend. I’m a big daydreamer, and that still hasn’t changed.

Books and libraries are great to make you dream if you’re a book lover like I am. I would wish that the complicated journal article in front of me were my favourite book instead, but my hunger for knowledge would make me want to try to understand it although all I got through was the abstract (article summary). In books with photos, I’d spend more time looking at the photos, especially if the font was too small, which it often was.

I would spend a lot of time trying to get my needs met in that library on Whiteknights Campus: I’d get staff to get books from the library of Bulmershe Campus, another of Reading University’s campuses so I didn’t have to go up there and I’d try to get them to photocopy something for me for class in large print so I could see it. They unfortunately had too much work to do, so I just asked my caregiver.

On the news today, they were talking about International Library Day and reading clubs for people with reading difficulties.

People who could use and benefit from these clubs are people with intellectual disabilities, children and adolescents with learning disabilities, the elderly or those with neuropsychological disorders.

Others who could benefit are people with temporary reading difficulties, such as people who recently immigrated to a country and who do not know the language or people who are starting to read, people who had poor schooling, or people who are illiterate.

What is easy reading?

Shared reading means sharing the experience of reading books, documents, websites and more. All these are specially prepared so people with reading difficulties can read and understand them.

Easy reading clubs help people with disabilities and circumstances causing difficulty with reading to read easily, as well as to understand and understand what is being read.

The groups are made up of people with different reading skills, who read aloud and share readings and activities, always guided by a librarian and therapists.

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,

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: