Ok so what now! Questions to ponder as a future is uncertain

 I have been quiet for a long time, and things have been a bit of a stretch. I have been thinking during this period that I should be reversing a few of the ideas that I had for this outlet. I am here to give an idea of what life is like with the condition.

Everyone assumes that everyone wants to have their place that is their castle. Yes, that is the case to a certain extent but when living with a condition such as cerebral palsy life gives you curve balls constantly.

Certain things can be a trigger an overload of anxiety and panic. that cause a circle of stress and anxiety.

These include house maintenance in any form, bills that are not anticipated and accidents. For me, it was the uncertainty of what the future holds for me as a person who has cerebral palsy.

Doing any amount of exercise or general existence can cause wear and tear on the body meaning that there is no certainty of what is going to happen in the future. As I have mentioned, in other posts the condition wears the body, 3 to 5 times faster than the average person.

So having to deal with the stress of the condition on top of trying to comply with what everyone else wants. It is a tough option that is not always what a person can cope with. So it may come across as a selfish way but it is part of the way a person has to deal with self-care.

Balance in all things! An observation in Equality.

In the beginning:

There has to be a balance in all things. Yet the scales of life throw wobbles. These wobbles can be about anything. 

And yet knowing where to make the balance is a difficult one. The lyrics for The Rythm of Life sung by Sammy Davis JR has the most meaning for me. 

However, I was having a drink and started to think about the balance of equality.

Equality in the simplest form:

In the simplest form equality is about ensuring every individual has an equal opportunity to make the most of their life and talent. 

There are other meanings too:

• Equal proportions

• Equal wages

• Equal homes

• Equal sizes

? Really?

Yet while having this drink and listening to a conversation I realised because everyone’s view on equality is different that it's not relevant. This seems odd but that is the point!

Example:

Take being colour blind; there are variations of this such as seeing two different shades of the same colour

But these are seen as the same shade when someone is colour blind. 

Ok So?

Applying this to the equality of people and the perception of what is right and wrong for that person is different for each one. Therefore it means that every person knows what is best for themselves personally. Although say for the physical side of the condition cerebral palsy there are similarities in each case yet each one is different. This means that no matter how much knowledge a specialist has they need to remember that the person who they are seeing knows the best about their personal situation. Everyone should not judge or disagree with the person whose life they are seeing. From an outsiders point of view. Because everyone is different and see things differently.

What can you do?

You can learn more about every disability you see and hear about. And educate the people around you who don't know about disabilities because although we are different we have so many things that are the same. 

Knowing when Change is coming

 How are you dealing with the world right now?

This has been one of the most hideous years ever for almost everyone in the world. The worst I can think of was a century ago when the Spanish flu killed 50 million people worldwide.

Now the world has changed because of this new virus. The number of changes that have altered the environment and social actions of people because of Covid19.

Everyone is struggling in some way some are even rebelling. These situations are scary for everyone understandably but we need to stand together. It will get easier with time and resources but these again will take time to find a vaccine or cure

How are you dealing with the situation at home or work?

There has been some kind of stagnation, which in a way has been a good thing. It has made people breathe and realise what is important both emotionally and physically. Yet others just don't care or don't believe what is going. Because they think it's a hoax but it's not.

It is ok you are not alone!!

I have had so much downtime because of what's been going on and have not felt like writing very much. It has certainly made things difficult because of the space where I am as well as emotionally.

It is super crowded especially as there are four of us in the place. Which is a tiny Victorian townhouse with incredibly steep stairs that I find hard to walk! I feel trapped at times here at the moment. So feel low at times and I am sure you do too at times in your own home? You can always contact me.

Don't worry too much about things I'm the same!

However, as facets of the world is gradually going back to some kind of normal with some modifications like the use of masks and hand sanitiser when out in public places like shops or using public transport.

Things are moving extremely gradually towards the future. I am kind of excited about it but wish it would hurry up. Because I would feel more confident in a place which suits me better. But you know what we are all in this together. And that is important to realise, we are all touched in some way or another.

Please don't forget to contact me if you are feeling low.

love and peace

xx

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

A wake Up

 

Further to my post What is in a cup of coffee any way I wrote about what I thought about coffee and what was my favourite type.

And although I did mention some of the benefits that coffee I did not mention all of them. I was contacted by #GerardPaul from #ManyEats in which he mentions many more. So in conjunction, I would like to add his amazing article Health Effects of Coffee which has more information. Although opposing to my own views on points. I would be foolish not to recommend reading it. So although this is a short post, I wanted to add more information. And since my previous post was a year ago on my original blog and rather than just edit my post I thought I would write a completely new post. 

Love and Peace

xxx