More Tests

"More tests,"

The doctor tells my husband while I watch him shake every night, and cry with pain every day. The doctor has seen this, and they know that his brain surgery from th 1970s caused most of the problem, but they can't yet name it, because this was 1970s brain surgery to remove a tumour.

No information was left about this surgery. It was deleted when he got to 25, but the little information we have to go on, now shows that he had a malignant tumour.

He was not told how this would affect him as he grew up, until he caught Covid-19 a while back, which left him extremely unwell, affecting the disabilities such as weakness on his right side, that he already had.

Shortly after, he was told Chronic pain, then he was told Fybromyalgia.

Today,

We are being told Parkinsons Disease.

Before that,

We were told Parkinsonism

There answer to it all is more neurological scans

And more medication.

And blood testing.

The point is, the NHS do not understand how much pain my husband is actually in, and they do not seem to understand that he now spends all day and night shaking, even after the medication.

They can not understand how upsetting it is for both of us to have to sleep seperately to avoid myself from getting hurt during the shaking episodes, which also cause extreme involuntary movement of his whole body which puts him in more pain.

He has been told he may need Levadopa, but he cannot have this until all tests have been completed.

However i,t feels like they are pulling him under a bush, trying him with at least six different medications, and making him wait months for an appointment to have scans, though they know these scans are not going to show much when it comes to Parkinsons because no test can conclusively confirm it.

Yet they say that they have to confirm it, and rule everything else out first, but what is everything else?

There is nothing else that can be ruled out, because the repeated scans all show the same thing - damages to the brain brought on by cancer and surgery from the 1970s.

A requirement for testing should not mean that my husband has to put up with all of this pain, particularly in relation to the frequent and violent shaking he has to put up with which leads to him being in more pain than necessary.

The pain is so bad when he is shaking, that it interferes with his speech and thought processes.

I have never seen my husband cry like he does today. I've been with him since 1999, and yes he has tears; but not like the tears he cries now, which is down to the high level of pain, lack of sleep, the shaking, and the nightmares.

He knows I can't sleep with him, and the shakes occur when I hold him. He feels guilty for something he did not ask for.

He is terrified because he does not know what is going on, and because he feels like he is losing himself.

Before this, my husband was a Registered Mental Health Nurse. He also worked in senior managerial positions, holding some of the psychiatric hospitals and residential care homes together, when they were struggling.

He helped the NHS when they were breaking down, when Covid-19 caused serious problems, and he had a huge passion and committment towards that.

He worked for many private companies, providing care too.

He also worked as a bank nurse for Priory Group.

Although long gone, he talks about his work at a rehab centre, where he helped people experiencing drug and alcohol addiction, in which he cared for some celebrities.

One of who is a well known singer who many will know, Robbie Williams.

This is someone who my husband treasures, and due to his circumstances, wants to be put back in touch with. If you can help, please let him know.

He also looked after Freddie Mercury's Nan, and a relative of Elvis Presley.

I'd say that isn't just something special, but it was pretty important work to him, don't you think?

He also looked after people with Dementia, and many other conditions.

Nursing was all my husband knew for 31 years, and if it wasn't for his disabilities, he would still be working today.

Here is the problem.

If my husband had money, everyone would be running to help him.

That was proven, because when he was working he was getting the best care, even on the NHS.

Now,

He has to make do.

Waiting too long for testing, putting up with the pain and shaking, and being given several medications that do not really work.

He stated that he feels like,

"One of the NHS's testing puppets."

Jonathan Daniel Townend (My husband)

Nobody should have to spend years in this much pain, just because their operation was in the 70s and the files were deleted.

Had those files not been deleted, we would have got to the bottom of this problem and he would have been treated with the care he deserves today.

This is one of the problems faced by the NHS and even private healthcare today, because files were deleted after 25 years in the past.

A doctor, nurse, or anyone in the health sector could say,

"That doesn't happen, today."

That statement does not take the horrible pain or shakes and nightmares away from my husband.

It does not take the tears or fear away.

We are supposed to have advanced in technology today, and yet, people like my husband spend their live's suffering, because of past problems like brain cancer which is the real term for the tumour that was removed when he was three years old.

You might think you are helping him by doing more useless testing, but the problem is that testing will not stop the problem, and may not even uncover it.

We need to start listening, and realizing that human beings should not have to suffer just because their histories have been deleted, and definately not because of money.

When are we going to learn?

We also need to understand that stardom is not a reason to walk away from someone you once classed as a friend.