About Motor Neuron Disease: How it affected my Family.

About Motor Neuron Disease

About Motor Neuron Disease (MND)

About Motor Neuron Disease (MND)

I would like to start this horrific article by saying that, after the shock of realising the truth about MND (Motor neuron Disease), I now feel strong enough to write about our experiences with the disease so far.

Michelle and I have now been very happily married for forty-four years. Michelle gave birth to eight wonderful children without a single problem. All are now grownups, and many have children of their own, our grandkids, of course.

We have had the happiest of lives together, and apart from giving birth to our children, Michelle is also a fellow director of the garage business that we have both owned and worked at for the total time of our married lives. A great achievement, wouldn’t you say?

The MND story goes back a couple of years. About Motor Neuron Disease (MND)

When one of our sons, Craig, was to marry a Spanish girl, Laura, in her home town of Granada, This was going to be a great occasion for the whole family. However, disappointingly, the first date was cancelled because of COVID restrictions.

Of course, the wedding was cancelled, and we had to wait until next year to rearrange it. By this time, we had to have a second COVID injection in order to fly to Granada and attend the wedding.

Michelle had never attended a doctor’s office and was a very healthy person up until she had a second COVID jab at the John Smith’s Stadium in Huddersfield. Soon after this, Michelle noticed that her left foot was starting to catch the floor in a peculiar way. This was called “foot drop”, and it was a first symptom of MND.

This was to be the first sign of the dreaded MND.

This disease is little known to most people, including myself. It was recently brought home to us when we saw the shocking results of rugby league star Rob Burrow, who contracted the disease after a successful sixteen years of playing rugby.

Rob’s progress was shown on national television, which brought home the tragic events that unfold when the illness progresses. Michelle is a very brave and clever lady. Her foot problem began to get worse, and after medical advice and specialist consultations, she was confirmed as having MND.

Severe emotional toll? About Motor Neuron Disease (MND)

This illness has a severe emotional toll that can be burdensome on both the patient and their family. Although I’m not a medical expert, I am aware of how challenging this time is for Michelle, me, and the rest of the family.

Michelle has now lost the use of both her legs and requires an electric wheelchair to enable her to move around the house. As I am writing this, she is currently in Pinderfields Hospital in Wakefield with a broken ankle due to an accident at home in her wheelchair.

Looking back, we are very grateful for the support we have had from the NHS.

I am at the moment classified as Michelle’s carer, with the aid of two ladies who prepare Michelle for the day ahead, by getting her washed and dressed.

Nobody should have to go through the difficult process of supporting a loved one who has MND by themselves. Making contact with qualified medical professionals Michelle has been incredibly brave about the whole thing; even participating in support groups and thinking about counselling could be beneficial moves.

Several organisations were there to offer her assistance

can also help other people through the logistical, emotional, and medical difficulties that MND presents. The ALS Association and the Motor Neurone Disease Association are two examples of such resources in the UK.

People can’t even begin to understand what we are going through, but Michelle has always been clear-minded and felt free to ask if she needed any information or had any queries that she believed could help her.

At present, she is still in the hospital at Wakefield, waiting for her foot to heal. Her left arm is also now getting weaker, but we have to take every day as it comes. Our love for each other will somehow help us get through this, and we have had a great response from family and Michelle’s friends.

The Facts about Motor Neuron Disease (MND)

What is MND, then?

The first important question is: What is MND? MND is a neurological disorder that is short and not so sweet. It interferes with the motor neurons, those vital cells that support breathing, speaking, and movement. Yes, this is extremely vital information. The really sick part, though? There isn’t a cure yet. But, much research is being done.

Indeed Michelle has now volunteered for a new drug trial from Sheffield Hallam University hospital

Currently, MND has many different forms, just like a chameleon. About Motor Neuron Disease (MND)

Because of the Ice Bucket Challenge, which went viral a few years ago, the majority of us are aware of ALS, or Amyotrophic Lateral Sclerosis. That kind of MND exists. Then there is Primary Lateral Sclerosis (PLS), Progressive Muscular Atrophy (PMA), and a few additional conditions. Although they may affect you differently, they all come from the same bad root: misfiring motor neurons.

Symptoms—the First Warnings

What are the symptoms, then? Now let’s apply reality. Early on, you can have muscle spasms and twitching. Another indicator is stumbling when walking; this, of course, was Michelle’s first sign that something was wrong. Slurred speech is another possibility. Although the early symptoms may seem harmless, they can quickly get worse. Sorry to worry you, but early detection is essential.

Progress: The Dreadful Reality

The illness gets worse. Sometimes quickly, other times slowly. Yet, it moves. Muscles deteriorate. Even simple tasks like picking up a cup or climbing stairs become heroic deeds. Even breathing soon becomes difficult. It’s heart breaking, I know. But let’s not ignore the situation. Let’s discuss it, spread awareness, and encourage study.

Identification: What and How

Well, it’s time for the diagnostic. One test cannot identify MND. Instead, medical professionals examine the symptoms, possibly do an EMG (electromyography) to examine the muscle impulses, and rule out any other diseases. It takes a little while, and honestly, the waiting is stressful. Pun not intended at all.

Therapy Options are available.

There is no remedy. But medications work. They seek to control symptoms and decrease the progression of the condition. Riluzole and Edaravone are a couple of the drugs that are frequently administered. Equipment like ventilators, physical therapy, and speech therapy can all be beneficial. Making those affected as comfortable as possible is the goal.

The Unsung Heroes of Caring

Let’s now shed some light on carers. They carry a heavy load, both mentally and emotionally. Offering round-the-clock care, making homes more accessible, and still finding time to promote MND awareness. I salute them.

Finding the End of the Research Tunnel

Then comes hope. Research is ongoing, and although scientific advances are being made, Scientists are working on genetic research, vaccine development, and novel therapies. The closer we get to a cure, the more we understand. Donate to research whenever you can. Every little bit counts.

The SummaryAbout Motor Neuron Disease (MND)

Looking back, both Michelle and I suspect that her illness may be connected to the second COVID vaccine that Michelle had to have, and we will be looking into this in more depth!

There you have it, then. MND is a difficult, ruthless sickness that affects not only the patient but also the entire family. Yet, with education, support, and research, we can dare to dream of a world without it.

Please share this article if you find it helpful.

Together, let’s battle MND with awareness and instruction. If you’d like to contribute any personal stories or advice, leave a comment. Keep the conversation going until next time!

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2024 update: Rob Burrow has sadly passed away from MND.