MS without any BS

What is MS?

According to the MS Society, Multiple Sclerosis is;

“… a condition of the central nervous system. In MS, the coating around nerve fibres (called myelin) is damaged, causing a range of symptoms.”

“… myelin protects the nerve fibres in the central nervous system, which helps messages travel quickly and smoothly between the brain and the rest of the body. In MS, your immune system, which normally helps to fight off infections, mistakes myelin for a foreign body and attacks it. This damages the myelin and strips it off the nerve fibres, either partially or completely, leaving scars known as lesions or plaques. This damage disrupts messages travelling along nerve fibres – they can slow down, become distorted, or not get through at all.”

“As well as myelin loss, there can also sometimes be damage to the actual nerve fibres. It is this nerve damage that causes the increase in disability that can occur over time.”

More than 100,000 people in the UK have MS. Once diagnosed, MS stays with you for life, but the condition and its symptoms can be managed with treatments and help from specialists.

A family affair

My dad was diagnosed with MS in the late 1980s, shortly after he left work in the steel industry due to a back injury.

I didn’t really realise that my dad was ill during my childhood, and why would I? He wasn’t showing any outward signs and to me, he was just my dad. Even when he’d tell me stories, like when he was under his car working on it and he suddenly lost sight in one eye, it never registered that this wasn’t normal stuff.

Then one day, when I was around 14, I went to school like any other day. Except that it would in fact be a very different day, one that changed me. We had a regular class called PSE (Personal Social Education), where we discussed various issues in society and built our opinions.

The topic for that day was Euthanasia. We sat and talked about what euthanasia was and that people did it to ‘die with dignity’. We talked about why someone would opt for euthanasia and the various terminal illnesses that lead people to make that choice. That’s when she said the words, Multiple Sclerosis. They echoed through my ears and bounced around my head.

When my dad came to pick me up, I told him about my day and the class I’d had. Without thinking, I naively asked if he would ever think about euthanasia and I parroted the ‘die with dignity’ slogan. He didn’t answer. I looked across and a tear was rolling down his face. That was the day, the day I realised the seriousness of what my dad was dealing with.

Since that day, I have paid more attention. I have noticed my dad very slowly change and small cracks briefly appear, showing how the MS affects him. He has become physically weaker and more so down his left side. He gets intense headaches, ones that look like they take all his strength to bear. He only walks around the house and with the aid of crutches, without them his lack of balance would have him on the floor soon enough. When out and about, he is for all intents and purposes, wheelchair bound. It really hits home for me when he has been to the pharmacy and returns with a shopping bag full of medication, that’s where I see how much effort it takes to keep him stable and relatively pain free.

Spot the difference

The thing with MS is how differently it can affect one person to another and how varied the symptoms can be.

Through coincidence, I have known three more people with MS via connections to my wife – let’s call them MS Sufferer 1, MS Sufferer 2 and MS Sufferer 3.

MS Sufferer 1 started when she was about 45 and the fittest she’d been in a long time, doing sport, working, juggling kids etc. It started with severe head pains, meaning life in a dark room and stopping work straight away. The other major symptom that stuck around for years was extreme fatigue so constant rests were required.

This then slowly progressed to mobility issues, so she went through the process of relapsing and remitting and would limp, then required crutches. Then a three wheelers push walker, then using a scooter for being out and about, to then finally having to commit to an electric wheel chair.

The house over the years was adapted to create space and include railings and easy access through front and back doors.

She’s now and has been for a while in the secondary progressive stage. She suffers from pressure sores due to sitting all the time, so has to have lots of bed rest and that in itself restricts what independence she has. She experiences double vision and terrible sensations in her hands and struggles to hold onto things. She requires care at least twice a day for morning and evening routine as she can’t move herself from bed to wheelchair.

She is 65 this year, so all the above progression of the illness has spanned 20 years. She tried various therapies and medication, some effective short term and some not.

MS Sufferer 2 had polio as a child so already had a weak left leg – at 29 he thought he had flu and after months of investigations he was diagnosed with MS, which affected his left side including his heart. He has attacks where he can’t stand, has a lot of pain and sometimes loses his sight for a few days. The cold weather brings out the worst of his symptoms and so he and his wife bought a house in Mexico that they rent out and use to take advantage of the warmer climate.

MS Sufferer 3‘s symptoms started at 41, she thought she had labrynthitis and deteriorated immediately – she didn’t walk or drive again. This is apparently known as sudden onset MS.

Therefore, each case can be incredibly different, with symptoms varying from mild to severe and the decline being steady or much more rapid. Either way, the devastation is the same.

Unknown future

My dad has now had MS for over 20 years and has been relatively stable. He hasn’t been for a doctors appointment for his MS in a long while. He does receive information and options to trial new treatments, but he chooses not to, because of the worry it may make his current condition worse.

So, what’s next? That’s the thing, no one knows.

MS is such an unpredictable illness. Not just in the way that it affects everyone differently, but also that one person’s symptoms can change at the drop of a hat and start to decline. It’s this decline that scares me. It kills me to see the pain and discomfort he is in now, I can’t even imagine if anything degenerated further.

My dad said to me recently, when talking about his condition; “I’d hate you to feel like this.”

I wish he didn’t have to either.