Moving forward with cerebral palsy

Cerebral palsy is a neurological disorder that affects movement, muscle tone, and posture. Living with cerebral palsy can present challenges, but with the right mindset and support, it is possible to move forward and live a fulfilling life.

One of the first steps in moving forward with cerebral palsy is to develop a positive mindset. This means focusing on what you can do, rather than what you can’t. It’s important to remember that everyone has limitations, and that having cerebral palsy does not define who you are as a person. By focusing on your strengths and abilities, you can build self-confidence and a sense of purpose.

For me this is the blog and ability to talk about my conditions. Both cerebral palsy and endometriosis. From a personal point of view. In order to educate others.

Another important step is to build a support network. This can include family, friends, healthcare providers, and community organisations. By connecting with others who understand your challenges and can offer support and encouragement, you can build resilience and overcome obstacles. I was always taught "there's no such word as can't"

Physical therapy and assistive devices can also be helpful in managing the symptoms of cerebral palsy. Physical therapy can help improve mobility and muscle strength, while assistive devices such as braces, walkers, and wheelchairs can help with mobility and daily living activities. It’s important to work with healthcare providers to find the right treatment plan for your individual needs.

Education and employment opportunities can also play a key role in moving forward with cerebral palsy. There is a lot more to do in this section as it's not always considered as an adult condition.

Pursuing education and career goals can provide a sense of purpose and fulfilment, while also improving financial stability. It’s important to advocate for yourself and seek out opportunities that align with your interests and abilities.

Finally, it’s important to practise self-care and prioritise your physical and mental health. This can include getting enough rest, eating a healthy diet, staying active, and seeking out mental health support if needed. By taking care of yourself, you can better manage the challenges of cerebral palsy and live a full and meaningful life.

This is why at times I don't post. As I feel mentally drained because my CP has caused problems either the night before or days before. And more often than not endometriosis has also interfered

In conclusion, living with cerebral palsy can present challenges, but with the right mindset and support, it is possible to move forward and live a fulfilling life. By focusing on your strengths, building a support network, accessing appropriate treatment and assistive devices, pursuing education and career goals, and prioritising self-care, you can overcome obstacles and achieve your full potential.

For me this is having a fantastic family of my own and my blog here, podcast and books which you can get from Amazon.

As I have said I'm in a bit of a stable place at the moment so I will be pivoting slightly on the blog back towards things I like and do as I had been through different things all mentioned here in previous posts. What have I got planned for now regarding the blog? You will have to find out by reading more.

When everyone else's dream is not your own

It can be difficult when your dreams don't match up with those of your peers or the people around you. It's important to remember that it's okay to be different and to strive for something that is uniquely yours. 

Don't be afraid to take the road less travelled and to follow your own path. You may find that it leads you to a place that is even more amazing than you ever imagined.

So what is stopping you?

The biggest thing stopping me is feeling overwhelmed by the task at hand. I'm trying to break it down into smaller steps that I can focus on one at a time, so that I can stay motivated and make progress.

And this has been most prevalent with the move that is coming up. Which is why I have been mentally exhausted and unable to write or even record my podcast when I know that I should. 

But I thought while in a bit of nomansland regarding it I thought what the heck. And thought that knowing and accepting that my dreams are different to everyone else would make a good post. 

Realising that my dreams are different.

In my last post a longer wait than I thought! I mentioned the situation and what's happening so I won't mention it again. 

But realising that my dream is not the same as everyone else is ok. 

There are people who have disabilities such as mine, cerebral palsy, and are able to get the dreams that most people aspire to but I never aspired to what was expected of me by my peers. 

Because of the uncertainty of what cerebral palsy does to the body as you get older. Each case and person is different. It is also not very well documented about the adults who have cerebral palsy as it is considered a childhood disability. 

Which is why I am here to show people how the condition affects people on a personal level as I age. I have written previously about what happens in a broad sense in the seasons and how they affect the body with cerebral palsy. And its series.

There is so much more!

There is so much more because everyone has a reason to be on this planet. 

I think I know that my reason is to be a voice for those who don't. And to help those who have family with the condition. But they feel that they don't understand what the condition is and how it affects us from a personal view. 

And that's part of my dream to be that voice and bridge between.

What next?

So although it is a quiet and stagnant time. Along with personal feelings of inadequacy and depression because of the situation I really wanted to write this post and be positive for the future.

For the future?

Well this at the moment is completely uncertain. And I can't plan ahead too much. That is doing my head in to a degree because I can't. Then again I know it is a lesson that I need to learn. So I am taking each day as it comes.

My hope!

Is that there will be some sort of stability after the holidays and that the home that I have will be the one. but if not then it's ok! Because nothing is truly final.

So what is next?

My aim is to continue writing about what is happening throughout this period. And beyond because that is my dream.

Cerebral Palsy A disease or condition

 Disease or Condition

So there are various ways that cerebral palsy has been boxed as either a disease or a condition. Below are the definitions by dictionary.com of each word or group of words.

Disease

noun

a disordered or incorrectly functioning organ, part, structure, or system of the body resulting from the effect of genetic or developmental errors, infection, poisons, nutritional deficiency or imbalance, toxicity, or unfavourable environmental factors; illness; sickness; ailment.

any abnormal condition in a plant that interferes with its vital physiological processes, caused by pathogenic microorganisms, parasites, unfavourable environmental, genetic, or nutritional factors, etc.

any harmful, depraved, or morbid condition, as of the mind or society:

His fascination with executions is a disease.

decomposition of material under special circumstances:

Condition

a particular mode of being of a person or thing; existing state; situation concerning circumstances.

state of health:

He was reported to be in critical condition.

fit or requisite state:

to be out of condition; to be in no condition to run.

 

Cerebral palsy

noun Pathology.

a form of paralysis believed to be caused by a prenatal brain defect or by brain injury during birth, most marked in certain motor areas and characterized by difficulty in control of the voluntary muscles.

My thoughts

As a person with cerebral palsy, I don’t consider it as a disease as it's not like an illness such as a cold or cancer which has two different options of either getting better or not.

I use those examples as the simplest form of the disease because they are the most common. Although there are many more.

But cerebral palsy in my point of view is a condition as the initial brain damage has already happened but its secondary effects continually change as the person gets older. 

It also means that there are differences in every different case of cerebral palsy and there is no way to cure a person with it. Whereas with a disease you can be cured or not. But a condition you live with. 

And things change daily and you either have a good or a bad day. And you have to continue with whatever you are doing. The same goes on with people with fibromyalgia or MS and other lifelong conditions. Whereas someone with some types of cancer has limited time, not decades. Although that is possible.

The Effects of Cerebral Palsy

I talk about those throughout the whole of this blog as I live with the condition and the following is a list of some of the posts

What is spastic cerebral palsy?

Ataxic Cerebral Palsy What is it?

Life with diplegic mixed cerebral palsy

Common Questions for me

And many more just check them out.

Final Thoughts

So you see it's slowly changing as the effects are less evident unless the initial brain damage is severe enough when the cerebral palsy is spotted. Especially if the condition happens as a baby during the early months. Or when it occurs from an accident later.

But also seasons and age affect the way cerebral palsy reacts within the body. This is mentioned in the series of posts that started with The Seasons and how they affect cerebral palsy. 

I hope you see my point of view and understand why I class it as a condition, not a disease.

The Seasons and How They Affect The Body With CP

 

What do I mean!

In the next series of posts, I am going to be going through the ways how the seasons affect the way cp affects the body on seasonal and weather types. This will include the way the affects the muscles and moods.

The following is brief outlines of each post. That will be up weekly.

Winter:

This is a particularly hard season, for many of us with cerebral palsy. As its weather and temperatures affect us quite severely. I will be discussing these in the next post. Which is out next week.

Spring:

This post is about the way this seasons weather and temperature affect us.

Summer:

Again this post is about how the season in all its types and how it affects the body when it has cerebral palsy.

Autumn:

This will be the final post about how the affects the body with cerebral palsy in the series although I have posted about the way ages affect the body with cerebral palsy. These areas follow:

• Challenges Ahead Part 1

• Challenges Ahead Part 2

And in this following series that starts with the following  about Depression and Cerebral Palsy

Final comments:

I hope you enjoy these posts.

Moving forward with Cp

Ok so you have a child with Cp:

Or you are a young person with the condition. There will be lots of people who are older than you. These people have the best intention in the world and yet get things wrong particularly about your condition. These people may be members of your family but don’t understand the condition. They may think they don’t. You must realise this.

Comments they make:

• Close your legs.

• Come on hurry up!

• You can do better than that!

• Pick your feet up.

• Stand still.

These are just some of the ones I have encountered growing up. Even now decades later these confuse me.

You may wonder why I say that. You’ll see.

Growing up and feeling out of place!

Whether you are a single child/part of a bigger family that you live with. You are a member of the family who is reading this with another member with cerebral palsy. Take in mind what is said as it does not matter what people say. There is always a sense of being out of place because we are not classed as normal. There are signs of it in every part of life. This includes clothes, looks, dreams, work, movies,  how we eat and drink, how we speak. But the thing is we are the same as everyone else but parts of our body don’t work the way we want. That can be a real pain sometimes. I want to make sure that everyone understands that it is not always easy to do, what is expected of them because it is not part of their dream. it could be completely different to what is expected. 

What is normal?

What is the question of being normal? Because being normal mean nothing? As a human being. I would have thought being able to give some purpose to the world and each other was better than not being able to do anything or being criticised. Some people who think that being different is not ok are wrong. Wanting to be normal is is a perception and that means being yourself is not acceptable. There are options to be sure to show that being yourself is better than being what everyone else wants. Because it proves that you are what you are meant to be no matter what.   the whole system of being normal is also being portrayed too much on TV  and film because there are not people enough people should I say who are betraying people who are different and this is where the perception becomes the norm.

Growing up!

Personally, I had very much the perception of wanting to be normal but then questioning that whole thing because I was on my own a lot. I watched a lot of TV and films where sexism and racism were the norms and it is not in my eyes until I was older that it made me question myself because  I am different because of cerebral palsy. Growing up despite being an only child and was treated no different than everyone around me. I found it incredibly difficult because I thought I was normal and was able to do stuff but later found that actually, I couldn't. And that made things very difficult and depressive for me because of the feeling of inadequacy.

Trying to be a people pleaser and follow their example makes it very hard on yourself and I have learnt this myself. Now shows that actually being yourself is stronger than r following the Sheep in human Society as a whole. Although at times of medical interventions such as the pandemic right now it is best to follow the guidelines. however, it does not stop you from being yourself within the confines of society.

Teaching people that being different is ok!

Being yourself and showing that being different is out is ok and good for the environment and for Humanity shows that equality in the human race can be done. It may sound stupid but there are still people who perceive that different is not ok and it makes it harder for those of us who want our own dreams and goals to be heard very hard to actually be heard to get what we want within our life.

What next?

What Next? is the question that should be on everyone's mind right now but in every situation. However, cerebral palsy and other disabilities need to be shown that they are accepted and we are valued because whatever is said meant by family members and others make us feel that we're not. So what is next? They might even try and say that but they're trying to help but actually, they're not! The best thing for you to do is firmly but politely say sorry I can't do that. Because the more people learn about the condition and other conditions will be able to be more accepting of other people.

Final thoughts

My final thoughts on this would be to educate people and educate people continually until it is done. however, I don't think it will be at least in my time but hopefully, in my family's next generation. There is such a long way to go to make equality for everybody on this planet.

Being healthy! While having cerebral palsy. Doesn't have to be a struggle!

Trying to be healthy with Cerebral Palsy

Trying to be healthy with this condition can be so hard at times and I have mentioned this in a couple of my posts, such as Exercises or no exercises, and 4 Amazing healthy eating ideas with a disability and since writing these posts originally so much has changed. I have learned a little bit more about the way that food is affected by the way a disabled person digests it. You may think we are the same and yes in many ways we are but we are different. One of the differences I never considered until recently is how we get the nutrients that we need to live.

The physical act of chewing

Every time anyone puts some food in their mouth there is the act of chewing the food. You may think this is the easiest way to get the nutrients that we need and yes it should be. However, it not always the case. Unfortunately, when a disabled person eats food it can be the case that we may not be able to chew the food sufficiently. This means that there are often bigger lumps going into the stomach. Consequently, the nutrients that we need are not got because the stomach is unable to get them.

Vitamin and Mineral Supplements

Another way that it is possible is to take multivitamin tablets to help your body get the stuff that it needs. 

Ok, so these are great if your want to boost things especially if you are feeling a bit poorly. These are also a great way of boosting everything if you are not able to eat everything. This might be because you are allergic to specific things. This might be fruits, nuts or something else. That's ok but also check that the supplements that you are taking don’t include something you are allergic to because that can cause problems.

Shakes and bars

These are great if you are monitoring what you are eating and drinking. But as I have mentioned in an earlier paragraph chewing or lack of chewing is part of the way of reason for not getting the correct amount of nutrients that you need. A shake might be a good way of boosting everything as you may not be able to chew enough. And that's ok.

Feeding tubes

Another way that is done for people who are unable to chew. For me, this is not something I know about but I do know that this is a way that it is happening at hospitals and homes. So if it is an option for you then you will need to research it. Making your own decisions in the end. 

My take on this

After discovering that because of my disability I have not been able to chew my food properly. I have made a conscious effort to chew more effectively as well as have supplements for anything that I am missing if along with the occasional shake to replace some of the stuff that I need. I have tried many different types of shakes and the one that I have found that works for me the best is Herbalife. I was introduced to it by the Paralympian David Smith. I will do an in-depth review of the shakes I was given in another post as well. as an interview with David Smith about everything, he is about.

What Now?

For me the choice is easy and it's to do a combination of everything because I am the only one leading my life and there are days when I forget to chew my food properly, so I will have a vitamin supplement. There are days where I won't be eating the right stuff so a supplement is needed. And when I don’t feel like eating so to speak yet I will need to have something so again a shake might be an ideal compromise.

Final thoughts

That is up to you and what you think is the best option for you. Because only you can live your own life. No one else can. My advice to you is to research everything you can. but make your own mind up to what you actually need to live your life to the fullest no matter what.

What is Spastic Cerebral Palsy

 Are you curious about why some people shake but don't have the condition Parkinson's? 

Do you see people sitting in a wheelchair every now and then shaking? And wonder why?🤔

Are you a parent of a child with either the occasional shake on their limbs or are they constantly shaking? Or do they have stiff movements?

I can give you some insight. As I have the condition as mentioned in Life with Diplegic Mixed Cerebral Palsy. But in this post, I am specifically talking about the Spastic type. 🦽

What are the symptoms of spastic cerebral palsy?

Primary symptoms of spastic cerebral palsy include muscle tightness, or increased tone, leading to stiff movements and difficulty executing precise motor control. When upper limbs are involved, flexion (Tightness)  is seen at the elbow, wrist and fingers.

There are various degrees of this. I'm fortunate to have a fairly mild case. It can be in any type of cerebral palsy such as diplegic, one limb or quadriplegic. It also can be combined with other types of cerebral palsy making it a mixed  This type of cerebral palsy is one of the most common forms of cerebral palsy but it does not mean that the person with it is not able to talk or whatever, it just means that their movements are laboured and jerky.  Depending on where it is it means that walking is harder or eating due to the movements in the arms. If the case is in the lower extremities, then it is very common to see the person in a wheelchair.

This does not mean that the person is unable to do anything at all. It means that things need a different way of thinking. The same needs to be done when the case is in the arms or as a quadriplegic. There are so many things that can be done to support the person with this type of cerebral palsy. 

I will show different options to aid the person with independence. To make the person as independent as possible. These will be gone into detail in other posts but the following is a list of what is generally known 

• Physical therapy 
• Behavioural Therapy
• Medication to control spasms/seizures
• Surgery

Physical therapy is the most important form because this means that the person having the best type of exercise for them. Unfortunately, it is not always possible to have it consistently. Many are only having blocks of 6 weeks of sessions then end up stagnating in their stiffness and often get worse.

Behavioural Therapy is the second most important form as this is the way the person learns how to do things so this is the most important form to start as early as possible in the persons' life as this teaches them how they can be as independent as possible. This includes getting dressed, feeding, cooking and everything else the average person takes for granted.

Medication is another thing that is given and many different types are to be suggested and advised by the doctors who are involved for the particular patient. And these are to aid against the constant spasms. As well as the pain that is in conjunction with the spasms. Which is sometimes connected with epilepsy and other seizure conditions.

Surgery is another option that is often used as a last resort because of the pain and positioning of limbs and smaller joints. Which means that the joints are fused. Therefore limiting movement further.

So each thing is to be done according to the patients' case as everyone is as individual as the person involved. Sometimes some options don't sound possible but actually are. The most common version of this is an injection of botox. Most people think of botox and the beauty side of the injections into the facial muscles making it impossible to frown at times. But the injection can actually relax the muscles making the movement easier to do.

These help the person live a more independent life to the fullest of their capabilities. Meaning that they have the same right as anyone else.

In my personal case, my joints can be held tightly with some differences to the average person.

As you see I hold one of my hands differently while drinking

It doesn't mean that I can't do things it just means that I do things differently and I don't let the condition get in my way. Because everyone is different and that is how we are meant to be.

Love and Peace

xxx