MS Awareness Week: Cara’s story

Familiar with Multiple Sclerosis? If not, read on as it’s an illness our Content Manager, Cara knows all too well.

In recognition of MS Awareness Week, she’s sharing her story.

But before we dive in, here’s a quick primer.

What is MS?

Multiple sclerosis (MS) is a neurological condition that impacts the central nervous system (the brain, spinal cord, and optic nerves).

With MS, the immune system mistakes myelin (a substance that protects the nerve fibres in the central nervous system) for a foreign body and attacks it, stripping it off the nerve fibres.

This disrupts the flow of information within the brain, and between the brain and body, resulting in a wide range of symptoms that vary in severity from person to person.

The cause of MS is unknown, and there’s no cure.

Cara’s story

What’s your experience of MS?

My father was diagnosed with MS in 1980.

Initially, he had relapsing remitting MS (the most common form of the disease) but it developed into primary progressive MS, which only affects a small percentage (10-15%) of people with the condition.

What were his symptoms?

He started experiencing problems with balance and co-ordination.

He would trip and stumble on the squash court (a sport he loved) and lost strength in his legs.

His eyesight was also affected.

He was a history teacher but was forced to retire on health grounds in 1990 as he could no longer read his student’s homework.

How did he deal with leaving his job?

He loved teaching, so it was a blow. And he struggled with the idea of not bringing in a salary.

But he dealt with it by throwing himself into the role of ‘stay-at-home’ dad.

Despite being plagued by fatigue and poor eyesight; he did all the household chores, walked my sisters and I to and from school, and took us to our various after-school activities. He was very hands on.

When did his condition progress?

By 1999, he could no longer walk, and was registered blind, but he refused to be confined to a wheelchair.

He would crawl around the house to get things done.

It would take him 20 minutes to move five feet, and he would need to rest every few minutes, but he did it for years, with no complaints or self-pity.

He refused our offers of help as he was determined to hold onto as much independence as he could.

But in 2010, his body gave up on him.

Years of crawling had irreparable damaged his shoulders and knees, and he was in a lot of pain. He had also lost all his upper and lower body strength due to the MS and could no longer drag himself around.

At this point, he became bed ridden.

How did that go down?

He was a pragmatist, so accepted it.

The fact he could still enjoy his classical music (which he was extremely passionate about) helped. 

But his attitude was amazing.

Soon after being confined to a bed, the MS affected his bladder function and he had to catheterised.

And because he had no upper body strength (or eyesight) he had to rely on the family (and carers) to wash and feed him, but he remained upbeat and positive.

He had a very dry sense of humour, which remained firmly intact.

Did he develop more symptoms?

Yes, but it’s hard to know which were related to MS, which were age related and which were linked to him being bedridden.

His knees would swell and cause him pain. And he was in and out of hospital regularly with chest and urine infections.

But he still got enjoyment out of life (as he often told me).

But things took a turn for the worse in 2021 when he was diagnosed with lung cancer, following a scan for what we thought was another bout of aspiration pneumonia.

A doctor called me to tell me the news and said chemotherapy wasn’t an option as dad was bedridden, and radiotherapy wouldn’t have any effect.

He gave dad 2-3 months.

As dad was confined to a bed with means to distract himself, I decided to keep his prognosis from him.

He knew he had cancer but not how bad it was.

He was determined to fight it and get well enough to see a classical concert I promised to take him to.

The thought kept him going for 3 months until the cancer beat him.

What legacy has your dad left?

He was one-of-a-kind.

I watched him struggle over the years, both physically and mentally. But he never gave up.

He accepted every setback with grace and a dogged determination to make the most of his situation, and enjoyed life right up until the end.

His strength and tenacity inspired me to join my local MS branch as a volunteer fundraiser, which I did for 20 years.

The lives he helped transform is his legacy.

Want to find out more about MS? Check out the MS Society website.