I'm writing this because there are many differences. Yet we are the same. Yes! We have physical difficulties that others don't have. But doesn't everyone have some kind of difficulty?
Having a disability:
Living with cerebral palsy doesn't mean that we are not capable of doing anything. I have said this in many of my posts "are you looking forward orlooking back with cerebral palsy" and Challenges ahead part 1" I have said it in my podcast too, But it is such an important thing to say because we are still alive and kicking so to speak even if not physically. We are mentally capable of anything! Just like you just sometimes we may need some help physically!
The average person
The average person can get dressed, feed themselves etc. they can also walk, or travel to places without help. But you see they may have unseen problems like bills, emotional situations going on or hidden health issues.
A person with cerebral palsy
A person with cerebral palsy just has the added problem of not being able to walk and may have to use a wheelchair or some kind of support to do so. We may also have problems with personal hygiene or getting dressed. We may have other problems as we get older too like our bodies age quicker than some. But this is not definable as everyone really is different. We may also have some difficulty talking but so do you if you are drunk!
We are the same:
Yet we are the same because we have 2 feet, 2 hands, one brain and the same amount of bones to start with. With life experiences, things change emotionally just the same as anyone else. You might end up in an accident and lose a leg or anything. So when we lose a tiny bit of our own independence we are just as frustrated as you or anyone else. I mean if you really think about it we are all the same yet different because everyone has some sort of disability and that may be asthma or something like that.
Final thoughts!
We are the same! What are the differences? Are our differences any different to those that you see in your own family? Do you think that your family members are stupid or anything because they are different from you? I am suspecting not! So why not treat us the same as you would treat them?
What next?
What I would like you to do is quite simply remember we are the same as anyone in your friends or family and if you know anyone who needs help with anything regarding cerebral palsy. Then send them here to learn more about the condition
at the time of writing this, I'm nearly 50 and I want to give you an idea of what it can be like but each case is different in all ways.
Energy expenditure and physical activity of ambulatory children with cerebral palsy and of typically developing children.
Original Article: Bell, K. L. & Davies, P. S. W (2010). Energy expenditure and physical activity of ambulatory children with cerebral palsy and of typically developing children. American Journal of Clinical Nutrition, 92, 313–319.
Research Corner by Dr Laurie Malone.
The nutritional needs and energy requirements of children with cerebral palsy (CP) are not understood. On one hand, there are reports indicating children with the condition unable to walk result in being under, weight. And those who can are overweight.
Bell and Davies (2010) conducted a study to examine the energy expenditure of ambulatory children with CP compared to typically developing youth.
Weight is an important thing to factor in as it is commonly known, people who have the condition are using 3 times as much energy as those who don't. The more weightsomeone has over what is safe means that they are putting a larger pressure on joints and muscles that are used. This is a danger with someonewith this condition like me. Any medication also is a thing to consider and the age of the person. I am learning this as I go along. Although it is known that some medications put on weight too even for the average person,
Energy used by a person with cerebral palsy changes over time as well. Especially if they can walk or not.
When sitting in a wheelchair being pushed and unable to control their own moves. people are not burning as much energy. As say someone pushing their own weight in one. Therefore they are using exponentially more energy. The same goes for someone who can walk either on their own or with walking aids and those who don't.
As a young child, I was quite often put on diets, to keep control, of how I looked. It was also to ensure that I didn't put, much on, or, cause damage to my joints. As an adult, I am conscious that I have to be careful.
When sitting in a wheelchair being pushed and unable to control their own moves. people are not burning as much energy. As say someone pushing their own weight in one. Therefore they are using exponentially more energy. The same goes for someone who can walk either on their own or with walking aids and those who don't.
Children
All medical professions will say; do not put a child on a diet; unless they are considered medically obese. Every option is to be considered before that is done. I would still just be careful and eat healthily with everything in moderation.
Teens
This is when things start changing even, for the average teen. It is advised that they are not to be put on anything specific; until they are 16. Even then, I would suggest everything in moderation as I said for young children.
Young Adults
It is in their late teens and twenties, as a guardian, you cannot take control of what they eat or don't. However, it is the time when they should be aware of what they are eating. It is also a certainty that this is the time that they will rebel.
I certainly did. I ballooned up to nearly 14 stone, putting, pressure on my joints. Which I regret greatly. It was also, in this age bracket, in which things hadn't noticeably changed for me.
I still had the same amount of energy that I had as a child. I had another condition that wiped my energy on some days. Which wasn't diagnosed until I was 30. I felt I really could not be bothered to look after myself very much.
My 30s
It wasn't until my late 20s I decided that I was going to try for children. Finding it difficult to manoeuvre, discovering that I was almost 14 stone. This was the decade; I changed everything. I tried fasting, fancy diets and fads that were out then, without a few acceptions; found that #WeightWatchers#WW, worked for me the best. I lost all my excess weight and fell pregnant.
After having my children and managing to only put one lb while pregnant, I thought, I could forget about it, and, go back to normal. To an extent, that is the case. Life got in the way; after 12 years break from another condition; I became ill putting on the weight again.
My 40s
I'm writing this post in my late 40s still learning as I go along. I will be updating this as I get older.
In my late 30s early 40s, I kept my mobility going but started really noticing that I was getting more and more tired, so got a mobility scooter at 42 years old. I questioned myself on whether this was a good idea because as a person I am very active.
I discovered with this I can do more like a mum. I am aware although it does conserve my energy and that ability, to do more, it can cause me to gain more weight. I decided to get serious with exercise, especially #physiotherapy, to maintain my #ability and #agility.
I got a #pedometer to track my steps, so I didn't seize up. I discovered this wasn't enough. I joined a #gym and for a couple of years while also monitoring what I ate. This did help me considerably so it is worth trying yourself.
I tried doing #SlimmingWorld and found it difficult to keep up although it does work. It wasn't for me, unfortunately. I wanted to continue going to the #gym but things beyond my control 2020 has made it impossible to do so. So I went back to what I knew worked a long time ago which was #WeightWatchers#WW and so far I have lost over a stone in weight.
You are in your late 20s plodding along quite nicely or maybe even in your 30s already and found things more challenging. It's ok happens to everyone.
You know that we use 3x as much energy compared to the average person so our bodies wear out quicker than able-bodied people. I mention it in my posts live with Diplegic Mixed Cerebral Palsy and Common questions for me. I’m here to tell you what is next as I go through each decade.
What’s next life has thrown you a curveball and you are beginning to see the signs that you need to slow down only you can’t. You’ve got loads going on.
Life, work, family, and yet you have the nagging feeling that you really should be doing physio when you’re not. First, you notice that a certain muscle is tight or some other symptom you notice. Maybe you’re tired more often. That’s ok it will be more evident the older you are. Maybe the pain is just niggling. Perhaps it comes and goes monthly or seasonal. It's ok it's normal.
Work and Life
You know what you are doing from day to day work-wise. Perhaps you married or in a stable relationship or even on your own but have a pet. Maybe you have a carer part-time.
Physiotherapy
It's ok but have you thought about how to resolve the issues of pain. Have you thought about the physio sessions you had as a child? Have you thought about getting your doctor to refer you to physio as an adult?
Or can you self refer yourself to a physiotherapist? Now is the opportune time to do this. You can get an idea of how much physio you need to do and what exercises. This is really important because by the time you get to get going to maintain your agility now. This includes muscle tone, movement the ability to be as normal as possible. Yeah, I know you think that other parts of your life are important and yes they are but nothing is if you don’t look after your body and your own abilities.
I get it I totally do and I have been in situations where I have been bed-bound because I have been stupid and not looked after my own body and I have realised that I should have done the physio as I went along through the years. I didn’t and am now paying the price for my own mistakes. This is also why I am writing the blog.
