Monday, May 29
In a time of calm
Sunday, May 14
Cerebral palsy at 50
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.
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.
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.
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.
Sunday, April 30
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.
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.
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!
Sunday, April 23
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 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 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
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?
Sunday, July 3
I have been reticent recently regarding writing and doing my podcast episodes. This post is all about that.
Things have been erratic with me since having COVID last month. I have also been feeling a bit anxious and worried about things as I still haven't had an answer for something. My mind has been on that lately. Which hasn't been exactly what I wanted. Writing this post has helped me feel a bit better. However, I'm unclear in what direction I want this blog and podcast to go right now so while I'm thinking things through I will write when I can
The options are as follows!
Stay the same.
Only do 1of the things.
There is one thing I don't think I can do is give it all up as I feel that explaining cerebral palsy and endometriosis and how it affects my life. Can be an insight for others and a solace for those of us who have either condition or even both. Yet I am uncertain what step to choose.
This one I'm not sure about as there are so many different things such as make-up, skincare, books, music, food, and tech. Also suffering from anxiety and depression are other options. Just to write about the conditions although helpful wouldn't be as interesting for the reader.
This option I'm not sure about as I am not sure what direction I would take the blog and podcast unless I focus on one of the other topics I already mentioned.
This option would be just to write about one of the 2 main topics such as cerebral palsy or endometriosis. I think though this might be an idea again it may be a bit boring.
By writing this post I think that I will stick with incorporating everything to show that we are just the same as anyone else.
However, I really would appreciate your feedback. So please leave your comments below.
Sunday, April 24
Does cerebral palsy affect intelligence?
This is one of the most common questions I get
So what do I mean by that?
Well, as mentioned before in this blog. In various posts such as life with mixed diplegic cerebral palsy What is the difference between us Learning who you are! Just to name a few. And quite honestly the answer in my opinion is no!
My reasoning for this?
Just because someone has the condition does not mean they are going to be of low intelligence. A condition of Cerebral palsy is a form of brain injury. Not a person's intelligence.
What are the main functions of the cerebrum?
The largest part of the brain, the cerebrum initiates and coordinates movement and regulates temperature. Other areas of the cerebrum enable speech, judgement, thinking and reasoning, problem-solving, emotions and learning. Other functions are related to vision, hearing, touch and other senses.
Meaning that cognitive parts of the brain are affected by cerebral palsy but it doesn't mean that we are low intelligence because we have to think things in a different way.
Many of us are teachers, university staff and much more. If that was the case there wouldn’t be people who had the condition but were in these jobs.
There is this misconception that because we have a disability it means that we have low intelligence. And that is just not true!
That would be like gagging people of all types by what they can do, not how someone thinks.
To show another example of this would be professor Stephen Hawking. Who, although had Motor Neurone Disease (ALS) was able to teach and research at the prestigious University in Cambridge, United Kingdom. Until his death in 2018. His IQ was 160 which was the same as another theoretical physicist Albert Einstein. He is most famous for his theory of general relativity.
So although Stephen Hawking was physically disabled by Motor Neurone Disease it did not take his ability to think away. This would mean that as the disease took hold then he would have been put in a care home never to be heard of in the first place.
Therefore cerebral palsy is a condition that affects the brain and the body physically. It does not mean we have low intelligence.
As far as I can see from a personal point of view it is the generations before who have thrust their opinions on all disabled, not just those of us who have cerebral palsy. But every type of disability.
What do I mean?
Right up to the 1980s here in the United Kingdom people who have any disability at any level were put into care homes.
It was even evident during the 1990s when I was out with my now-husband we heard an old lady say that in her day people were put away.
We were put away for being different and deemed simple-minded just because our limbs were not able to be used the same way.
And unfortunately, the lingering thoughts of having disabled people put away is still being considered no matter how badly a person is physically affected. Because being disabled is not the norm.
But what is the norm?
Being short-sighted, long-sighted having to wear glasses, wearing hearing aids because we’re hard of hearing. I Have asthma. These are the accepted norms for what I’ve seen people think but walking differently, speaking differently unless you are from a different area of the same country are classed not.
There is also the problem of being of different races and religions that are still being argued about too.
So my final thought on this is what is normal?
Sunday, April 10
Solutions for the seasons and their affects on a body with cerebral palsy
Many of these Solutions will come across as common sense which they are however people who don't know how cerebral palsy affects people with it. people should take these into account. remember it is not just the brain damage that was caused at birth it is the secondary issues such as muscle tone and joint problems that occur later in life and when this starts to show it is best to address s two seasons correctly for that particular person it depends on how they are generally and what they are as part of the disability.
If in summer the person is unable to control their body and body temperature then the best way is to keep as cool as possible as this will help the person with their movement if they can if on the other hand, they become cold then it is best to keep them warm and it doesn't matter whether they are outside or in because if someone was to have the central heating on in their house in the summer and it was hot they're muscle tone would also be affected and too difficult to manoeuvre easily for day-to-day life. therefore windows should be open at times and that person dressed appropriately.
If the person can walk on their own with or without aids then it is best to consider what they are doing for that particular day because everything has to be taken into account for the amount of energy that is used by that person for that particular day making it harder for the next day or 2. The average person would just put on a coat or jacket etc for that particular day but a person with cerebral palsy has to account for everything that they are doing as well and where they are going and how they are walking or moving around. if in a wheelchair or a mobility scooter then the person has to again-dress accordingly to what the weather is like as any other person would. but as I have just said in my previous paragraph the person or people who use aids such as a walker or walking stick have to take those into account for where and what they are doing on that particular day.
Therefore just like anyone else a coat or jacket would be needed for 4ev re1 who is walking on their own or in a wheelchair/Motability scooter however additional needs would be required for a wheelchair such as a blanket or waterproof cover, for the person who is sat in the chair for long periods out and about, should a shower or freak weather happen.
Also while at home the person should be doing simple exercises that they can do with the carer or on their own to keep that mobility at the level that they are at rather than deteriorate further than expected or wanted at a quicker pace.
I have another post on that earlier in my blog And they can be found at Exercises or No Exercises
Sunday, April 3
Summer and its Affects on the Body with CP
This is the third season when everyone one.is outside and it doesn't matter whether you have a disability or not but with this season comes the reversal of the situation for winter. because again muscle tone and joint pain can occur. With cerebral palsy, it doesn't matter because of the muscle tone being tight being because of it being too hot just as it would be if it was too cold as in winter.
A good example of this was a British Paralympian who was in Rio and said that her body loves the heat for muscle tone as it made it easier to run etc however her skin and the rest of the body where cerebral palsy is not affected the body hated the heat because of the humidity.
Doing this group of posts I asked various members of a group who have cerebral palsy and different types such as spastic, ataxic and diplegic And it doesn't didn't matter what type of disability or cerebral palsy someone has where the weather will affect the body to some extent.
In conclusion to this then it would make no difference whether the person went out if they were worse too hot or too cold because the disability would be affected in the same way however when the weather is ideal then is the optimal time to go out and do things.
Sunday, March 27
Spring and its Affects on the Body with CP
This is a season where things get a little bit easier. the weather has been getting slightly warmer each day. Maybe a few days where it has been more difficult to get out however because of the way things are with cerebral palsy this is also the time of freedom to start with. Here in the UK, we are just coming through the winter when we are stuck indoors. because of the way the weather has affected our bodies with cerebral palsy.
These are the days that are slightly better than the last few months because of the way cerebral palsy is affected and the pain and the looseness of muscles is beginning to happen again because of the warmth. making things happier for us as we can move freely. it doesn't mean that we have to stay indoors but we do if it is a colder and windy day because of the pain in our muscles and joints.
Again like Autumn and Winter, these windy days in spring make it harder for us to manoeuvre and whether we are using support or not does matter so is more suggestive today to stay in as it makes our joints more painful and muscles tighter making it harder to move.
what you doing
Feed the days are difficult despite being warm we feel often that we can't go out because of the factor that the ground is slippery so decide not to it doesn't mean that we don't all the time but most of the time I'm if it is a stormy rainy day then we don't because of the muscle tone and joint pain.
These can be the best days as it cannot be too hot but yeah it's warm enough to keep our joints supple. These are the days when there when we grab opportunities with both hands because we can do the most.
Similar to winter and autumn this is when the pain for joints and muscles are stiff making it harder for us to do what is required on a day-to-day basis. So we spend most of the time indoors doing things if we can.
This is when in fact things become freer. however, because we find it difficult to move around on bad days when it's cold or windy such as in winter or autumn or early spring it makes it more exciting for when summer comes.
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