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

Cerebral Palsy Day 2021: Random Ramblings.

When deciding what I would include in this blog post, I searched for what I said last year on this day. I recognised the fact that the year was harder than most and wished everyone a happy CP day.

I confess that by today I wished things would be better and a little easier for people with CP and everyone in general. I guess they are a tiny bit, with vaccines being rolled out in the US. As I have family there I was concerned about the vaccination programs and still am.

As a person with CP and hydrocephalus, I am high risk not just for getting Covid, but of blood clots and brain bleeds (since they were one of the reasons I have CP and hydrocephalus) but I am not in the US and have yet to wait for my vaccine.

The wait so far is hard and frustrating, but I feel relief and happiness every time someone is vaccinated. This means we are one step closer to defeating this virus.

Up to now, I have been dealing with voluntary self-isolation in the best way I know how, with support from my husband and with a little help from my Friends (yes, that show is still one of my favourites).

My CP has been playing with me lately and although I have my supported exercise regime with which my husband helps so I can be perfectly stretched out (although the stiffness of my muscles means I am often in pain whether I am or am not stretched because of my posture) I admit the stretches make me feel more relaxed. That was further helped by a heat lamp which is so relaxing. I recommend this for people with tight muscles due to CP and any other cause.

Back spasms and a familiar feeling of large “balls or knots” of muscle in my legs or shoulder blades have proven especially hard to reduce and when they are stiffer than usual it’s painful to be touched so massage is something I don’t like, unless people are very gentle.

We have had some very relaxing days as well as some very busy ones. My books are always something that are relaxing and recently I found the book Patience by Victoria Cooke on NetGalley. As a “read now,” I could download it straight away without permission from the publisher and started it last night. It is about Patience who has Rett Syndrome and her family. I have always been curious about medical conditions other than mine and have seen some Rett Syndrome videos on YouTube. I have not been able to find books about, or by, people with CP on there.

In wanting to help raise some awareness for disabilities and help with the sale of clothing that I like and have, I emailed 3E Love’s Wheelchair Heart wondering when the vintage style t-shirt would be on sale, and asking for it to be (I would not mind another one if the stock does not run out). I have it in Sunset Orange.

Low and behold, it was uploaded to the site a few days later. If you love vintage style like me, you will love this.

Speaking of style, I am wearing green eyeshadow today. Green is not my favourite colour usually but if I find an unusual shade I will buy it. It is the colour all CP warriors identify with for awareness. The product I am wearing is the Water Shadow in Slate Green by Kiko, which is a beautiful dark sea green. Luckily I have 2 of these so enough for many more CP days yet!

However you are spending today, I hope you find a way to honour the day.

International Day of People with Disabilities: My Experience of the Pandemic

Today is the International Day of People with Disabilities. I have blogged on this day in other years but I feel like with the way this year has been, I need to blog my thoughts here more than ever. I want to show others with disabilities that you are not alone in what you might go through this year. Well, this year has been a surprise and it also has not. Just like everyone else, I had plans at the start of the year. And just like many, my plans have been reduced to wishes. Our plans as a married couple have, too. Through all the months that have gone by since Covid-19 was declared a Pandemic, I have been affected by it although I have not been physically ill. The last time I went out was February. The trip to Primark seems a lifetime ago now. What was I thinking at that time? I was thinking I had to wish my dad a happy birthday in a few days’ time. I was thinking how happy I was that my husband did not mind everything that taking me to one of my favourite shops and everything that entailed. Accompanying me out of our apartment, on the bus and into the shop. Positioning me in the best way so people did not bump into me. Passing me things and making our time out enjoyable. I felt so glad that I had him and that, rather than feel overwhelmed that I, his wife, requires physical support to do what she loves, he just took it all in his stride then and always has done. Now, at the beginning of December, my mind goes back to how this year has been for us. After that trip to the shops, I was looking forward to going again. I loved being part of society, seeing the bright lights, shops, old cinemas and our park. I remember how my mind started thinking of the summer, my favourite season. Long days in the park or hoping the pool hoist was working so we could go. March 14, 2020. The day the world stopped. State of Alarm. I can still remember the fear that sliced through me. I was not sure what it meant, but I knew it was bad. I have always been a little “fearful” of things: MRIs, blood tests, dental appointments or how exhausted I would be after physio or occupational therapy. Of house fires, of people not being able to physically help me. The list goes on. The fear I felt now was subtle, as if this were a joke or as if this were not happening. I admit back then I thought the Pandemic would be over quickly. I hoped it would be that way. I was struggling to keep my voice calm as I told my family that it was not flu. I had always taken medical issues seriously and still do. I think that is something that is ingrained in me due to my complex disabilities. In the months that followed, I would be in floods of tears fearing for my life, my husband’s. We would see our routines altered and I would wake up in tears fearing he was not there or that one or both of us had been in ICU. That was just a horrible dream fortunately. But the images on TV and what the doctors were saying bought home to me how quickly normal life could turn into chaos and that, disabilities or not, all of us were medically vulnerable where Covid-19 was concerned. Images of what I thought I went through to get into this world based on my medical history went through my mind. I had fought to get here. We had to be OK. I made a decision one day. I would do whatever we had to do to survive no matter what it took or what others thought of our approach to what was going on. When we decided to self-isolate, February was not even over. I felt a sense of dread at the unknown world a Pandemic might present for us, since no physical contact between us was not an option since Alfredo is my primary caregiver. I posted on Facebook that it would destroy me if anything happened to those I loved and to please stay safe. “Stay safe” were the two most-used words in my emails in 2020. Unlike some people who may have used the words in a hypocritcal way, I was being truthful when I used them. I knew that if I had to get through this time, I had to stay busy. I could not give up my blogging and book routine. I kept adding to my Goodreads Challenge and at the time of this post I have listened to over 180 books. I did go through frustration too. Frustration when my iPad did not work with my apps. With books being so important to me, I thought “what do I do now?” My MacBook Air saved my life in more ways than one during this time. I was back doing everything I wanted and more and thanks to my dad and Alfredo for helping me get it without me having to leave home. I made it my mission to research well for a laptop that would meet my physical needs. Another low point came now and then. It was feeling like we were the “only ones” at home. In a quiet building, I had no idea who was home. I felt I was missing out on things like we were at a disadvantage. I hoped I was still able to get my muscle relaxants and everything I needed. We were as it turned out. Daily life with CP, hydrocephalus and visual impairments was already a challenge I was used to. Living in a pandemic was not. Very occasionally, people with disabilities were mentioned on the news as being those who, as well as the elderly, were having the worst time. I cried as much as if the person with a medical condition were my family as I found they had passed away and felt I needed to do more to help. I clicked on every Change.org petition I could and hoped that my action would go far. It did. I helped people with disabilities be better helped during the Pandemic. I wished I could know some of them. I felt annoyed with those who were complaining about being at home. I had my books I had Alfredo. I had my favourite TV shows. Online shopping was something I did now and then and it would become a lifeline during 2020. I felt happy I was still able to get what I needed although we did not go anywhere near a shop. I still long to go to a clothes shop but that will have to wait until the world is safer. Keeping us both medically safe was what mattered then, and still does now. With the summer came the wish that the virus would go away with hotter days. I knew that would not happen. We did what we had to do and found support in each other. As someone who feels the cold in a bad way during colder times, I did not want the summer to end. There was talk of the flu vaccine. I was pleased to have it at home after some organizing. Being protected from that, I felt better. All this time, my projects were forgotten about somewhat. I had no ideas. But as November rolled around, I was ready to tell the world my experience. I felt the need to share the story of how I experienced the Pandemic. Combined with my opinions on the books that got me through the year which also found their way into my memoir of this vastly different year, I felt my thoughts and experiences were able to find their place on the page at last, so have been glad for NaNoWriMo this year. Now, we are in the early days of December. My Gran has mentioned my birthday a few times and I have been a little quiet about it. I know that we will do what we can that day and I do like this time of year for how festive it can be. I realise this year has been very tough for me, my husband and others. On this, the International Day of People with Disabilities, I want to spread hope and good wishes to everyone who is battling through the Pandemic with the added uniqueness that having disabilities brings. Because we came into the world how we did, that does not mean we are less. I have been shocked at the further injustice people with disabilities have had to face. Further cuts in care services and missed appointments where social distancing measures cannot be met. Within the disaster of a year this is still being due to the Pandemic. I feel I am not “the only one” experiencing fear, doubt and even loneliness. Instead, I know I am fortunate. Fortunate not to be in hospital and fortunate to be alive. Fortunate that we can still afford all the food we usually eat and that we do not have to go to an emergency center for help, food or shelter. We have our apartment but at least we have it. We have had to fight for better access to some parts of the building and we got that this year. Another frustration for me was that due to social distancing and the dangers of the pandemic we have not been able to take advantage of that so much. One thing I tell myself is that someday we¡ll be able to. My last reflection for today is that if Covid-19 has bought something good for me in terms of my disabilities, it has allowed me to be vaccinated against the flu in the comfort of our apartment and it has meant that there is hope for Alfredo and I being able to have the Coronavirus vaccine sooner than most because of being in a “vulnerable” group. Until that day comes, we will keep doing the best we can to get by each day. Love to those who have thought of us this year. And hope, support and strength to everyone who has some kind of disability or medical condition that is making the Pandemic more of a challenge. My message to the world is: We Will Get Through This. We have in spite of the hard parts. We have hugged and kissed as well as supported each other unconditionally. When we married, we made a promise to be there for each other always and care for each other. So, now more than ever, it really is a case of “in sickness and in health.” No doubts or questions asked. Our priority is our heath and wellbeing now more than ever and I hope that next year is a better one. Whenever you think this time is hard, think of what (or who) you have and find strength in the fact that one day life really will be back to normal as we knew it. I have felt the Pandemic has stripped away everything we worked so hard for at times as it is such a marked change. But what we knew is still there. We just have to be responsible if we want it back.

Making My Mark: How I Run a Blog and Write Books Using Assistive Technology. #World CP Day 2020 #WorldCPDay @WorldCPDay #CPMakeYourMark

Today is World Cerebral Palsy Day. This year, the theme is ” Make Your Mark”. I look forward to this day every year and was happy to find that the World CP Day team had emailed me about it. The challenge this year is for people with CP, their family friends or caregivers to think about how the person with CP has made their mark. Achievements, solutions you (if you are a person with CP) found or that someone who helps/helped you found and what changes you, or they, advocate for. I always think about my life and what I have done and achieved. I think with how this year has, and is being for people the world over, it encourages us to stop and think. To evaluate our life more.
Achievements My first achievement in life was survival. I was born at 29 weeks, one of identical twins. I am now 38 years old. Sadly, my twin did not survive and so these 38 years have been the longest time ever without her. I always wanted to try and achieve what others did and after a fight, I got into nursery, school and university. I have always loved words and, although I have a Geography degree which gave me skills to analyse texts and of course I had long assignments, I had always had a dream that someday I would write my first book. But writing was physically difficult and painful, so how would I do it? Solutions I found: I had a lot of Occupational Therapist (OT) assesments and the help of another person in classes. When I was 5 years old and the first person with disabilities at my school, my assistant bought out a huge, ancient looking typewriter for me to trial, to no avail. A series of classroom assistants later, and fast-forward to age 17. My pre-university OT assesment determined that the best way for me to produce work on my own was…..my voice! Dragon Dictation
was then installed on my computer, and I was able to do assignments and send emails just by voice. Years on, I still use it and have used the app as well as the computer version. I also use Dictation, a built-in tool on Apple products. Recently I was searching for a version of Dragon Dictation for Mac so I could use the product there and came across articles where people with disabilities were asserting their rights to the software and were as shocked as I was that it does not exist if you do not have a Windows computer. Curious, I checked the Nuance site, and sure enough it was nowhere to be found. I use Hover Text on my Mac. It is a magnifying tool that makes any text on pages bigger. More on that in another post. Changing the subject to something I bet you are wondering about. So, did I achieve my dream of that book I was talking about? Yes, I did. The first opportunity came in 2013 in the form of National Novel Writing Month, popularly known to seasoned participants as NaNoWriMo. 50,000 words in a month? I was soo nervous the first time I did the challenge, but it was worth it. My first book was a fantasy novel. The following Spring, I dictated the sequel and that became a trilogy. From then until now, I have dictated all my books and have a Young Adult series of books that has 2 books so far. I have 2 memoirs, one which is about being a twin and another which is about my experience of being in love, engaged and married. Drawing on my love of Geography, countries and cultures, I have some travel writing. They say write what you know. I do in some respects but also love to write the kind of books I would buy. I love women’s fiction and romance and novels with characters and plots where someone overcomes something or has to fight for what they want.
I knew that disability is underrepresented in novels and so decided that from my first book onwards, at least one character would have a disability. Here, I did use a disability I know about: CP. But in some other books, like in the fantasy series, some characters have disabilities that are not CP and so were ones I had to research which was also fun. Am I published? Not yet, but I hope to be. As a winner of NaNoWriMo in 2013/14, I had some proof copies of the books in my fantasy series printed so that is the physical book and a good keepsake of some of my work. Back then I was not ready to release the first book I had out into the world straight away. I have always been like this: even with school work, great work requires thought and edits. I realised that if I wanted to be the best writer I could be, I had to train more. So I have been doing every free online course I can find since one of the drawbacks of me being able to do a paid one was cost. That was, and continues to be, a huge obstacle and I am glad I found a way around it. I signed up to newsletters by authors I liked, searched the Internet for writing tips and prompts if I wasn’t sure of what I wanted to write about or a particular technique, and got on writing-related email lists. Complmenting Things: I felt like my writing was not enough and have had lots other things I wanted to talk about, so got into blogging. I have had a number of blogs over the years, and blog about my life, disability and beauty products HERE ON MY BLOG, JUST KATHERINE. I had always been curious about book reviews and had only left a few reviews on Goodreads until I became a book blogger. I’ll leave my story of how that happened for another blog post, but it was another way I could embrace my love of books. And the books I review are ebooks so I do not have to worry about the struggle it is for me to hold and use physical books effectively. Changes I Advocate For I say be your own advocate if you are able to be, and if not, have a good support network of people who can advocate for you. I have always been against the idea some people have that those of us who are differently abled cannot enjoy books. We can, no matter our level or type of disability and whether or not we can read ourselves or have to be read to. There are different formats of books. Whether it’s an ebook, audiobook, audio CD large print physical book or standard physical book there is a book format for everyone. That is something that has improved over the years. I am happy that Amazon and other online booksellers offer different formats, and as a writer I like the idea of publishing two or more formats at once. I am an advocate for audiobooks and ebooks as well as any technology that makes reading easier. I especially advocate for VoiceOver on the iPad, and I tell everyone who wants to use it about it whether they have difficulty seeing the screen or turning a page or just want a book read out to them. I believe assistive technology is the future in allowing more and more people to enjoy words and books. With a bit of conversion and tweaking, all books can be made available in accessible formats. There are books that are still not available in alternative formats and I really believe they, and every book, should be. Because the joy of books is something everyone should experience. The books I choose to listen to via VoiceOver are PDFs which it can recognise easily. This is a really relaxing way to access books for me and anyone with a Kindle app and an iPhone or iPad will be able to use it too. I am an advocate that everyone everywhere should be able to write a book even if they cannot use a keyboard on a computer, or find writing difficult. Pen and paper is not the only way. A voice can produce a book in less time and mean the difference between relying on physical help for writing to the ability of a person with physical limitations being able to write anything from an article blog post or short story to a full-length novel. To end this post I want to say that everyone can enjoy books in their own way and with the right technology and support. You just need to find the best solution for you. And if through this post I have convinced you to work on your own book with assistive technology, I am so glad I have. Because the experience is so worth it. Remember, there are many things you can do today to support those with CP, even during these unprecedented times. Why not videocall them? Send them an email to say hi or send them a “thinking of you” ecard? Or, you could wear green, the CP awareness colour, and send them a photo.
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Featured on the Blog Undercover Superhero! 

Ever wondered what it is like for me living with Cerebral Palsy, Hydrocephalus and 4 Vision Impairments? 

I have a special post for you today.

I was contacted by the owner of the disability and lifestyle blog Undercover Superhero to share my story.

Keep Raising Cerebral Palsy Awareness 

 I take every opportunity I can to raise awareness for cerebral palsy.  

Happy CP awareness day to everyone in the USA who has CP. 
This year this day is harder than most but despite this, please don’t forget to spread awareness in any way you can. It can be as simple as wearing green. 

Keep spreading awareness and keep safe! 

World Cerebral Palsy Day is on 6 October. 

💚💚💚💚 Cerebral Palsy  Awareness Day 2019💚💚💚💚

37 years ago I came into the world with my identical twin Natalie.At 2lbs 6oz each we were small and very premature at 29 weeks. 

When my diagnosis of Cerebral Palsy and Hydrocephalus came, my parents were shocked and saddened. 

Since that day I’ve done so much in my life that I’m proud of: graduated from university, fallen  in love got engaged and then this year got married. 

My many book drafts are  still on my computer and my dream  to be a published author is still very much alive. 

Today is World CP Day. Although I think there is still so much to do to make people’s lives better, I would not change my diagnoses for the world: I’m proud to have CP and Hydrocephalus. 

October is always a busy month for me because it’s hydrocephalus awareness day on the 25th. 

I’ve often asked myself what disabilities Natalie would have had had she survived (she lost her battle for life on New Year’s Eve 1981). 

I’ve achieved many dreams in life and hope to achieve many more. She lives on in me and I am proud to be who I am today.
So I want to say that dreams are possible.That even with CP or hydrocephalus or any other disability they are  attainable, however big or small they are. 

Never stop hoping and dreaming! 

The aim of today is awareness, but awareness days aren’t enough. I feel the world has a long way to go until real equality for people with CP or any other disability is achieved. 

                          💚💚💚 

How I Cope with Stormy Weather with Cerebral Palsy and Hydrocephalus

Spring is full of varied weather. Warm days, then a rainy one and then a storm. This week, despite being warm, was full of storms and rain. I have always disliked storms. The dark clouds and how long some can last.

By far, the worst thing about them for me as a person living with Cerebral Palsy and Hydrocephalus is the thunder and the lightening. I hate thunder as I hate loud noises, and the sudden sounds will make me jump. Lightening is extremely bright and will do the same. Anything that is unexpected will do that.

If the weather is hot or humid, this can be worse as people with hydrocephalus are often sensitive to changes in air pressure. This happens to me, and causes me to feel like I just don’t want to do anything, like all my energy is sapped. I also get headaches. The severity of this depends on where I am. I find it is always worse in England.

When this happens, I just rest because I don’t feel like doing anything else.

When I was little, I’d want to sleep in my parents’  bed and not my own when storms woke me up.  Now, I’ll stay up as late as possible doing something else and literally “wait for the storm to pass” if it happens at night or I’ll try not to think about it. I’ll count the seconds between lightening and thunder in my head.

My lack of eyesight makes my hearing stronger and I can tell a storm is coming when it is far away, often easier than others can. The air just feels…..different. Heavier somehow. The harder parts for me and what makes me most uncomfortable are when it’s nearer as I don’t know how noisy it will be.

I do enjoy studying the weather though. I learnt some meteorology during secondary school Geography and then I found a course online.

Storms are always more difficult for me when they happen ” live.” Like I said, I just wait it out. This can be really frustrating at times, especially with long storms. One thing’s for sure, I’m always glad when the storm is over!

World Prematurity Day 2017

Did you know that every 1 in 10 babies is born prematurely? That’s the statistic. I was one of those babies. 

On 22nd December 1981, I came into the world at 11:24AM at Kingston Hospital in Kingston upon Thames, England. Minutes before, my twin sister, Natalie was born. We were both identical and both weighed 2lbs 6oz (1 Kilo 8 grams). We came 11 weeks before our due date and were taken to the hospital’s NICU for treatment because neither of us could breathe. At 6 hours old, we were taken to another hospital, Queen Charlotte and Chelsea Maternity Hospital by emergency ambulance, because the hospital could take both of us in their NICU and where I was born could not. 

I was on life support for 2 weeks and both of us had numerous heart and lung problems as well as other infections. On day 3 (Christmas Day 1981), prayers were said for us and a baptism was held in hospital as our hearts stopped and everyone thought we wouldn’t make it. We DID, but were still critical. Natalie’s condition worsened and she was taken from my side 9 days after we were born because the complications were severe. I wasn’t aware of this because I was still on life support. 

These pictures show Natalie (top) and me (bottom) . 

Around this time, I had a CT scan to check the size of my head. It was seen that I had an increased head circumference and I was diagnosed with hydrocephalus. This is when the brain is unable to regulate and drain  the amount of cerebrospinal fluid (CSF). This fluid usually is able to be drained off and regulated automatically by people without hydrocephalus. It’s very important as it cushions and protects the brain and spinal cord. I had my first brain surgery at 2 weeks old and had my last at 11 years old. 

I was also diagnosed with Cerebral Palsy, or CP. This is the collective term for a group of neurological conditions which can affect movement, balance posture speech hearing eyesight coordination or learning. I have Spastic Quadriplegic CP which means all 4 of my limbs are affected. Other side effects of my prematurity are blindness and my sensitivity to different temperatures and feeling in my body is impaired. 

Despite this, I can: 

Speak Spanish fluently

Dictate my own books 

and I have a degree and finished my education. 

Talk

Make my own decisions (although I, like many people, can sometimes be indecisive:))



Support Premature babies everywhere!