This week we have the wonderful Amy (blog link here) who has so kindly accepted my invitation to talk about her condition and how it affects her life. Thank you Amy!
‘Having half a body doesn’t mean a life half lived’
That’s my attitude towards the condition I was born with: left hemiplegia. Hemiplegia literally means half paralysed. You can have left or right hemiplegia. Left hemiplegia is a type of cerebral palsy, one of the more mild forms. Cerebral palsy is the most common cause of physical disability in childhood. In the Western world it affects 1 infant in 400. There are many different types and subtypes of CP the full name of my type is: ‘spastic left hemiplegia’.
I was diagnosed with cerebral palsy at 9 months old. My only symptom was the fact I was only using my right hand. The doctors diagnosed me pretty much straight away. It was a massive shock to my then 23 year old Mum to learn I had cerebral palsy as I looked so ‘normal’. There are a lot of myths surrounding cerebral palsy, for example that all people are wheelchair bound, have learning disabilities and die young, and this was the future my Mum envisioned for me. The causes of my CP are unknown. CP has multiple causes; it’s caused by an underdeveloped brain, or brain damage. In the instance of hemiplegia, damage to the right side of the brain causes left hemiplegia and vice versa. I was a premature baby, the placenta had stopped feeding me so I was only 4lbs 4oz, I was delivered by emergency c-section, and stopped breathing when I was born. However, my Mum was also told that a seatbelt injury when I was in utero could have also caused my disability, due to a bleed on the brain. In some ways I would like to know the cause, just for curiosity’s sake.
In short, it means that my left arm and hand is paralysed – I don’t use it for anything except I use the hand as a makeup palette and a paper weight. I don’t have any voluntary movement or control over it. My leg is also affected by hemiplegia, I am able to walk, but I have no control over my foot, my balance is poor and I walk slower than ‘normal’ and with a visible limp. I guess you could say the effects of my disability are similar to that of a stroke. The muscles on the left side of my body are very weak and are affected by something called spasticity – basically my muscles are permanently contracting (because of faulty brain signals) this makes them get very tight, and if this tightness is left to its own devices, the muscles will permanently shorten, because they aren’t being stretched, when this happens they are known as contractures, and the only way to rectify this is to have muscle lengthening surgery. Deformities can also develop if muscle tightness is left untreated. In my case, I’ve developed club foot due to tight muscles pulling my foot inwards. My hand is also currently like a claw due to tight muscles and tendons pulling my fingers under. I have a curved spine (scoliosis), albeit very mild, and a large kyphosis (hunch back) because of the muscle imbalance between the muscles in my spine, the left side is very weak which has allowed my spine to curve. Hemiplegia has invisible symptoms too, which are less well known. I have visual perception issues, I can’t read maps, follow directions etc. I also have reduced sensation on my left side, for example, I can’t feel myself burning by the fire. Fatigue is also a big issue for me – people with CP use three times more energy to move around.
People with hemiplegia are all affected differently – some can use their affected arm, some don’t have a limp. 1 in 5 people with hemiplegia cerebral palsy have epilepsy. Behavioural issues in childhood are also very common – I was very prone to tantrums as a child. People with hemiplegia are also more vulnerable towards mental illnesses. In my case I have generalised anxiety disorder and depression.
Thankfully, although there is no cure for my hemiplegia there are a number of treatments available to help me cope with the symptoms. Physiotherapy is the mainstay of treatment. Throughout childhood I used to go to physio weekly. I have to do daily stretches on my affected side to stretch the muscles and prevent contractures from developing. I also have frequent botox injections. This stuff had medical uses long before the beauty industry waded in. It basically paralyses the nerves in my muscles and lessens the spasticity, this stops pain and also makes physio much easier. It’s amazing stuff. I have it injected under general anaesthetic and when I wake up my muscles are so much more relaxed. Unfortunately, the effects only last 3-6 months so I have to get it repeated or have surgery. Over the years, I’ve had a lot of surgery to lessen the effects of muscle tightness (sixteen scars and counting!). Surgery for me usually involves, lengthening muscles and tendons, or transferring tendons to a more functional position, or fusing joints. The best surgery I ever had was a wrist fusion op in 2011. This means my wrist will stay beautifully straight, even though it was done for pain reasons, as my wrist was permanently bent under. I also wear a leg splint, to help my walking and stabilise my ankle joint. I don’t mind wearing it as it’s zebra print!
What Hemiplegia means to me
For me hemiplegia is my normality. As I was born with it, I’ve not had to learn how to adapt or get used to having it, I feel incredibly lucky in that respect. Being one-handed is as natural to me as being two handed is as natural to you. I often get greeted with ‘Sorry’ when I tell a stranger of my hemiplegia diagnosis. I hate that, because I am who I am and I think I cope really well with my disability so I don’t need pity, sympathy or apologies. With a disability like hemiplegia, a positive attitude is the best asset. I have defied the expectations of physio by my determination to do things ‘normal’ people do. I learnt to ride a bike without stabilisers, it took me a little longer, in fact my little sister taught me, but I got there. I also learnt to swim. In some senses my hemiplegia has acted as a motivating factor. With my condition, it became clear to me at a young age that certain types of employment were going to be off limits, those involving manual labour. This made me work extra hard at school and I believe it’s what made me decide to leave home and go and get my degrees. If I’m honest, I don’t really notice the things that I can’t do because of my hemiplegia, I’m very lucky in that I have a supportive family and partner to do the things I struggle with. I’d be lying if I said this condition wasn’t hard work at times. Although cerebral palsy is non-progressive, in that the initial brain injury does not change, the symptoms can worsen due to ill-managed spasticity. In my case, since June 2011 I have had to have 3 operations to get rid of contractures and to ease pain and I’m waiting on another surgery. This has made finishing my Masters degree tricky as I’m back and forth to the hospital having physio and other interventions. In fact, since November 2010, I’ve probably only spent 2 months off the waiting list for surgery.
I don’t really know what the future holds hemiplegia wise. People with cerebral palsy often suffer with ‘post impairment syndrome’ basically the aging process happens a lot quicker for us because of the strain that the condition places on our bones and muscles. Many develop osteoarthritis as early as their 30’s, as well as osteoporosis. I try not to think of that, and that’s why I don’t mind the surgery so much because it lessens the chances of getting arthritis when I hit my 30’s. Working part time is my only realistic option due to fatigue and pain but I’m okay with that. Although I’m a person with a disability I have the same ambitions as everyone else, and it might take me longer to achieve them, or I might have to find alternative ways, but I like a challenge.
Thank you for taking the time to read about my condition, and thank you to the lovely Carlyn for kindly asking me to write about my disability, I’m happy to share my story and help others with the same condition.