Wednesday , March 22 2023

I am imprisoned in a closed body


When Paula first said she had a definitive illness, the first thing she said was "how long have I got?"

She met her shoulders, this was a question that could not be answered.

At that time, the 48-year-old said she felt "unfeasible" when the neurologist continued to tell him that the MND had an estimated life span of six months to five years but is unlikely to succeed in the past five year mark.

Paula King, a former hairdresser and mother of 28-year-old Jessie, was diagnosed with MND in February 2016 after her first symptoms had appeared in September 2014.

Paula knew very little about the disease on her diagnostic day, but Stephen Hawking learned about this condition.

Currently, the 50-year-old is affiliated with wheelchairs and has lost all control of his body from the "death of the soul" disease, but while her body is deteriorating, her mind is still the same.

Paula King was diagnosed with motor neurone disease in 2016

She said: "I do not like that I have no control and my independence, things such as my makeup and the linking of my shoes are the soul that destroys.

"My brain is the same, but my body is not, it's getting worse."

At night, after Paula's diagnosis, she went home and was in full shock.

"I remember the first diagnosis night, I was upset, I had a heartbeat, and I thought I would die tonight," she said. "I was afraid to see what would happen."

Paul's daughter Jess said that despite her "best friend" watching this cruel disease, they are doing their utmost to stay positive and use whatever they have.

Jess said: "It's very difficult to watch mom walk through, but we have very positive outlook, given that you might just fall and stay the same.

"We have tried to get the best out of a really bad, fake situation.

Following Paula MND's diagnosis, Jess and Paula King are trying to make a positive outlook

"It's not about winning a battle in my eyes, it's definitely about how you fight the war.

"For someone to be a lifelong life and how happy we should be, he must act positively.

"Yes, we have angry days, emotional days and stressful days, but otherwise we try to get as much as possible and enjoy each other's business."

Paul also has a refreshingly positive outlook.

Paula said: "I think there should be someone who will find the treatment, I believe it's close.

"I would say to someone who is diagnosed, this is not the end of the road, it simply differs from the life of your life.

"Believe in yourself and know your own mind and know your own body.

"Never give up hope, where life is, hope."

Paula King and daughter Jessica

Paul first encountered symptoms of MND when she began to stumble, but first she put it on the arthritis she was on the way. Only after four falls she went to the doctor.

Paula said: "I have arthritis, and I continued to fall on my right foot in the first symptoms of MND. I thought it was due to my arthritis in my knee and when I went to the GP and explained that I fell and they sent me for an MRI scan. "

The tests showed that Paula had worsened the lower backbone, which delayed the diagnosis, as physicians initially believed that this might be due to this.

Paula and Jess after Paula MND diagnosis

Then, a few months later, Paula's fingers in her left hand were not very graceful, so she returned to her doctor.

Paula's doctor appointed her to see her neurology, and her face fell in the waiting period.

"My tongue was swollen, so I went to an emergency brain scan. It was just a waiting time between them, it's just a constant test."

Paula's daughter Jessa explained that everyone diagnosed with MND has a different experience and is not aware of the specific symptoms and it is difficult for you to diagnose it.

Jess said: "As they diagnose MND, they should exclude all other neurological diseases that they might be.

"There is no exact diagnosis when they first diagnosed their mother, they said they would be a reliable MND, and after years of further symptoms they knew they were what it was."

Paula King with his family

Jess said she hopes to make people more aware of what MND is.

She said: "As soon as you mention the word" Cancer ", no matter what kind, everyone will have some idea of ​​what it is.

"You mention something like that which completely destroys the body, but leaves you with a complete mind, and no one has a clue.

"There is no medicine, and it is a terminal illness that people are not too sure.

"Our great thing is helping to expand people's knowledge and understanding of MND, even if people think that" this is something I did not know about and I find out a little bit today. ""

Jess has taken many charitable events to help raise money for MND, including Tough Mudder events, car boot sales, and is the place to run the London Marathon with the MND Association.

Jess added: "In my opinion, fundraising is really important because I simply believe that more money will be included in research, the more things you can find.

"It's too late in the 50th birthday of the mothers, you never know what might happen, like the Ice Bucket Challenge, from where it came from and found the main gene."

Jessica King, with mom Paul and grandparents, Rose and Graham King

She currently earns £ 4,000 from personal events, and here you can donate to her cause.

What is MND?

All further information is obtained from the NHS website.

Motor neurone disease (MND) is an unusual condition that affects the brain and nerves. It causes weakness that deteriorates over time.

It is always fatal and can significantly reduce the life expectancy, but some people have lived it for many years. There is no medicine, but there are procedures that help reduce its impact on everyday life.

Symptoms of neurological disease in a woman

Symptoms of the theme neuronal disease are gradual and may not be obvious first.

Early symptoms may include:

  • weakness of your ankles or legs – you might travel, or it is harder to climb the stairs
  • obscure speech that may make it difficult for some foods to swallow
  • weak adhesion – you could drop things, or it's hard to open jars or extend buttons
  • muscle cramps and twitching
  • weight loss – Your muscles or legs may become thinner over time
  • difficulty stopping yourself to cry or laugh in inappropriate conditions

What does it get and why

Motor neurone disease is an uncommon condition that mainly affects people in the 60's and 70's, but it can affect adults of all ages.

This is caused by a problem with cells in the brain and nerves, which are called motor neurons. These cells are gradually interrupting work over time. It is not known why this is happening.

If you have a close relative with motor neurone disease or a condition associated with it, known as frontotemporal dementia, you can sometimes get it. But in most cases it is not used by families.

When to see the GP

View GP if:

  • You think you may have early symptoms of motor neurone disease – they will consider other possible conditions and, if necessary, will be able to send you to a specialist called a neurologist
  • A close relative is a motor neurone disorder or frontotemporal dementia, and you worry that you may have a risk that it may relate to a genetic counselor to talk about your risk and possible tests.

It is unlikely that you have motor neurone disease, but having the correct diagnosis as early as possible can help you get the necessary care and support.

Tests and diagnostics

In the early stages, it may be difficult to diagnose motor neurone disease. There is no uniform test, and several conditions give rise to similar symptoms.

To help exclude other conditions, a neurologist can arrange:

  • blood tests
  • scan your brain and spine
  • tests to measure electrical activity in your muscles and nerves
  • lumbar puncture (also called spinal cord) – to remove and test fluid from the spine using a thin needle

Treatment and support

There is no treatment for motor neurone disease, but treatment can help reduce the effects of symptoms on life.

You will take care of a team of specialists and your family doctor.

Treatments include:

  • highly specialized clinics, usually involving specialist nurses and work-related therapies to facilitate routine tasks
  • physiotherapy and exercises to maintain strength and reduce stiffness
  • speech and language therapist advice
  • nutrition and eating dietary advice
  • a medicine called riluzole, which may slightly slow down the progression of the disease
  • medications that relieve muscle stiffness and help relieve swallowing
  • Emotional support for you and your carer

For more information, visit the NHS website, here.

Do you have a story to share or what can we investigate?

Contact [email protected], call 07584591102 or call tweet @ KatieTimms94.

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