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.

The new year ahead!

As we enter the new year, we have the opportunity to make it our best one yet. I'm sure we all have our own personal goals, but let's also strive to make this year a positive one for everyone.

Let's be kind to one another, show compassion and understanding, and be supportive of our friends and family. Let's also strive to be creative and come up with new ideas and solutions to any problems that arise. I'm sure this year will be filled with a lot of challenges, but if we approach them with optimism and a can-do attitude, then together we can make this year memorable for all the right reasons.

Wishing everyone a safe and happy new year!

My goals!

My goals for the year ahead are simple.

• To move to the right home.

• To write more posts.

• To write more poems

• To write some short stories

• To be back on air with your hits digital

What are your dreams?

My dreams for the year are to continue to learn and grow as a person, to stay healthy and active, to develop meaningful relationships with friends and family, to pursue my passions and goals, to give back to my community, and to be open to new experiences and opportunities.

What are your goals?

There are so many things that could be goals or dreams that you can have and they are not constricted to what the disability that you have.

Ok so the conventional ideas don't always work because of how cerebral palsy can affect the body. But that shouldn't matter because you as a person matter more than the disability. You are a person first and foremost. Who happens to have a disability.

Possible dreams

There are so many different things that I want to do and plan that I am doing them on a weekly basis rather than long term because at the moment that is out of the question. These include:

• finish packing up the house

• Start getting healthier

• Start being more proactive

• Unpack at the new house

• Get healthier food

• Read more

• Write more

And yes these coincide with my goals so be it. These are my personal ones as those are what I have wanted for a long time. But for various reasons I have not been able to complete these for a very long time.

Putting things forward

Putting things forward means to me making plans and goals shorter than a lot of people would expect as I can't plan as far ahead as I would like because of cerebral palsy. So my plans go mainly week by week at the moment. Although I have dreams that can be longer term but I don't see each step. Which I'm just beginning to learn at my age.

It doesn't matter what the dream is!

This is what I think is important the most because as I said in the earlier paragraphs it doesn't matter what your goals and dreams are. No one is the same and shouldn't have the same dreams as everyone is different.

So next!

It's the new year and there are new things to experience and learn from each day. And that's the most important thing to realise.

So there are positive and negative energies that happen daily. And you are stronger than you think and can do whatever you want. No matter what you have as a disability.