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.

Cerebral palsy at 50

Introduction

Cerebral palsy is a neurological disorder that affects movement, posture, and coordination. It is caused by damage to the developing brain, most commonly before or during birth, but it can also occur in early childhood. The severity and symptoms of cerebral palsy can vary widely depending on the extent and location of the brain damage.

While cerebral palsy is typically diagnosed in childhood, it is possible for someone to be diagnosed with cerebral palsy later in life. This can occur if the symptoms were mild or went unnoticed earlier in life, or if the individual experiences a neurological event later in life that exacerbates existing symptoms or causes new ones.

At age 50, someone with cerebral palsy may experience a range of symptoms, depending on the severity and type of cerebral palsy they have. These symptoms may include difficulty with movement and coordination, muscle stiffness or spasticity, tremors or involuntary movements, difficulty with fine motor skills, and problems with speech, swallowing, or breathing. They may also experience pain or discomfort associated with their cerebral palsy.

It's important for individuals with cerebral palsy to work with their healthcare team to manage their symptoms and maintain their overall health and well-being. This may involve physical therapy, occupational therapy, speech therapy, medications, and other treatments. With appropriate care and support, many people with cerebral palsy are able to lead fulfilling and productive lives.

And the following is about how cerebral palsy has affected me as I turn 50.

What about me?

As I enter my 50s later this year I am learning and preparing for the next stage in my life.

I have mentioned the previous decades in the following posts CP and Depression in your 40s, CP and Depression in your 30s, young adults with cerebral palsy and Depression, Teens with CP and Depression and finally Dealing with Depression and Childhood with cp. Now as I move forward with the next step I've come to realise that for me anyway that the changes I face in the future are going to be even tougher than now.

What am I planing?

I am mentally and physically preparing for the time that I may end up in a wheelchair permanently. Right now though I'm only in one when I need to be in places where I can't use a mobility scooter or walk, because of getting tired in the process. I have also moved home twice in the past 3 years because of the situation. And those I have mentioned in Urgh Again! And others.

Why now?

Because I am now nearly 50 and although it is very likely that I will be living a long time. There is just no guarantee that will be the case. And as the changes come quicker the older I get I would like to be in a position where I can just get on without worrying about what is going to be happening next physically.

At the moment!

I am in the hopefully penultimate home before anything really happens. I am keeping myself able as much as possible while I can but the changes are coming. The thing is as my daughter said recently you can fight but eventually you will be tired of fighting against everything. So I am preparing for that time.

Why?

Because I want to be able to live without too much worry and still have fun and adventure whilst my body tires and changes over time. And before I am stuck and unable to do things for myself.

Final thoughts

I'm not being morbid, I'm being realistic as I know that things will happen. And I want to live my life to the fullest within the limits I have now and the future. I will also be bringing you along so that more people can learn about the condition.

What has been happening?

Why have I been so quiet?

I have been quiet and only occasionally posting when I have had time or felt like you the readers needed to know. 

Well at the moment I am in a temporary home with my family. We had been given a place that wasn't fit for purpose with my cerebral palsy needs. But only stayed there for a week before being given a place that's ok.

What does that mean?

It means that for now we have somewhere to live. But we still have to look for somewhere else. It's not like it used to be here in the UK. Where you just got given a home. But that's ok as there are so many people who need homes here in the UK. People may be saying wow and that's ok. However, so many things have changed since I grew up. In my last post the bad days I talk about how the world has changed for the better regarding equality. On the other hand there has been an expectation for those of us who have disabilities such as CP. Which is that we are not expected to have a family of our own. But are expected to live in a home for disabled people alone or just as a couple.

Who is to blame?

I'm not blaming local councillors or authorities because it's not totally their fault. The highest level of government doesn't see us so doesn't expect it. I blame them because they have the highest power in setting laws etc. And as far as I can see they don't listen to those of us who have broken the expectations and done things differently. Like me by having cerebral palsy and a family of my own. Thus expecting us to have a one or two bedroomed flat. 

What have I been doing?

I've mentioned that I moved twice because of cerebral palsy in the last 6 weeks. The last place as mentioned is a better fit for me although not perfect. And over the last 4 weeks I have been settling in and getting certain things done. 

What does that mean?

That means unpacking what is needed and using up everything that we have but don't necessarily need consistently. It also means that I have been decluttering even more than before when I moved originally back in 2020. I talk about that move in urgh again.

What's next?

The next step is just to be grateful for what we have and make the next steps until we get the forever home or the one that is fit for purpose when it comes to the point that I end up in a wheelchair. And that's ok. 

What are the next steps?

The next steps are:

• Going to local meetings for people who are in difficulties.

• Look at privately owned homes where the landlords are willing to do work to adapt their homes. 

• Bid on homes on homechoice that are fit for me.

Now!

While waiting for homes to come up, there is nothing I can do but wait for other people to do their things. It has been known to frustrate me and it will for a while but I know that this is the best thing for now!

The bad days!

What do I mean?

What do I mean by the bad days? I mean the days when the disability, chronic pain, anxiety and depression all throw tantrums in my face. The days that for whatever reason I feel that my life should be hidden.  

Those days!

Those days are getting fewer but I know that they will never go away completely. They are the most horrible days when all I want to do is hide and sleep until either the pain goes away or something else changes. And that's not going to happen despite my dream and wishes.

I don't want to die although in my formative years that has been the case.

When I was growing up it was the end of the generation where the children were told to be seen but not heard and the disabled were still put in care homes rather than out in society learning, doing and earning when they can.

It was a time when the lbgtq+🏳️‍🌈 community was also hidden and denied. 

Coming to terms!

Now there has been so much change yet nothing really changes at the same time.

In general most minority societies are accepted and yet there are times when we are expected to hide. Or other members of society are ashamed of us. And I think that will always be. Members who would rather we were still hidden or didn't exist. But that's not going to happen. I'm glad about that.

At the moment!

As I have said, things have changed, but not enough. For me the world has only taken a few steps towards equality for all the disabled.

  

What would I like?

I would love it if there was more equality for us regarding living in homes too. Because there's not enough housing for people who are disabled and have families of their own. It is almost like we are not allowed to be able to have a family.

What's happening?

What do I mean by that? At the moment it is known that we are in the process of getting a home that is fit for me and the future that may happen. This is the ongoing theme at the moment that I post about in posts such as In limbo waiting for the future. Especially as cerebral palsy causes so many changes as you get older with the condition. Those I have mentioned in other posts such as what is spastic cerebral palsy

 

What's next?

I don't really know what is next for the future for anyone let alone myself. Although I am working on some things that I need for myself. But I hope that there is more equality for everyone no matter what.

What about you?

So what do you think about this? What are your thoughts on this?

In Limbo! Waiting for the future

It can be difficult to feel like you are in limbo, not knowing what the future holds. However, try to focus on the present moment and what you can do to make your current situation the best it can be. Remind yourself of the things that bring you joy. And use this time to work on personal growth. The future will come when it is ready and you can use this time to prepare for it.

What does that mean?

It means exactly that! This may mean learning new skills, self development in any way. Sorting out the business you're in, getting the house in order for the next move or anything else that is needed.

For me!

This has meant having the house partially packed up. I kind of hate this situation. However, I am ready for whatever happens next in the sense of the house move because I am waiting for other people to do what they need to do in order to make my next step. That stage will be exciting. ☺️

What have I been doing?

I have been reading all types of books, catching up on TV shows that I have wanted to see and seeing friends. While waiting I have also dealt with some of my medical issues that I do talk about in posts. So that includes the main issue cerebral palsy, endometriosis, general anxiety disorder and clinical depression.

What now?

All I can do right now is wait until I get told what is next. It is frustrating but it is a good way to learn something like patience. And that is something that I have been doing since this has begun.and I will be seeing friends, reading, watching TV series I've not seen and wanted to as well. 

What's next?

Until I know when I am moving I will be working on my self development. This will be regarding my worth, use, patience and more.

So until then that is what is happening with my life with cerebral palsy and endometriosis. And that's ok for me!

Until the next post!

I hope you will read some of my posts and stick around for the next one.