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.

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

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.

Spina Bifida and Hydrocephalus Awareness Week 2018

It’s that time of  year again- Spina Bifida and Hydrocephalus Awareness Week. All this week, everyone should wear yellow for those of us with Spina Bifida and/ or Hydrocdphalus. As a person whose first symptoms of hydrocephalus were detected when I was 2 weeks old, and who has had 4 shunt replacement operations (and has lots of scars to prove it), I have a story to tell. I have another blog post with that.  See it here

But for those of you who don’t know what hydrocephalus is, we all have a fluid protecting our spine and brain called cerebrospinal fluid (or CSF). If you have hydrocephalus you can’t control or regulate this fluid at all and this causes your brain to swell up. Mine was detcted via CT and the nurses and doctors were very concerned that my head was growing too fast. When I think about my story, I feel huge thanks to the neurosurgeons at Great Ormond Street Children’s Hospital in London who operated on me for the first time in my life. And later to the neurosurgeons at The Radcliffe Infirmary and John Radcliffe hospitals in Oxford. Without them, I would not be here today.

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!