Living and coping with MS

We are publishing a powerful and moving piece today on our blog from Nikki Kyriacou a graduate of photography, whose mother Maggie died from complications around MS last year.

I knew Maggie around 30 years ago when we were both working in residential care homes for adults with physical and learning disabilities. She was a joy to work with, a wonderful communicator who loved people and life.

Nikki’s piece is much more than a chronicle of Maggie’s deterioration of health. it is a testament to the love and care provided by Nikki’s dad Soph and herself and we are delighted to publish this moving piece in memory of a very special person.

Mark Rivlin

Although I grew up knowing my mum had Multiple Sclerosis, I have asked my dad to help me with this blog as he was mum’s full time carer.

Maggie Kyriacou
Maggie Kyriacou: A wonderful wife and mum
It was back in February 1992 when my Mum lost her vision in her left eye known as “optic neuritis” where the nerve supply from the eye to the brain inflames and the vision pathway is lost within that affected eye. Although optic neuritis is associated with MS, not everyone who gets optic neuritis goes on to develop the disease.

It was a shock to my parents when this happened, especially as mum worked with adults with physical and learning disabilities in the early 1980s and knew what MS was, I was too young to understand what was going on. She spent 11 days in hospital on high doses of steroids to reduce the optic neuritis, which it did, but was told by her neurologist it may come back in the same eye or the other eye and that this was a sign of MS but needed to have a lumbar puncture to confirm that.

Mum was in denial as she didn’t want to have the lumbar puncture, and it was my dad that said you should have it done as it may be benign – another form of MS which didn’t mean she would get the symptoms. Eventually mum had the lumbar puncture (this is where they remove fluid from the spine and test for MS) about a year after the optic neuritis happened and it confirmed it was MS and mum was in tears as she knew what lay ahead having worked with people suffering from MS.

Things continued as normal and my dad gave Mum all the support she needed, but things did start to deteriorate; mum would be unstable walking and her vision was not as it had been (excellent at one time 20:20). She continued to work and also pursued her passion which was singing and started to sing in clubs and pubs in and around the north west of England. She was doing well and loved it so much that her MS symptoms did not bother her as she was focused on something positive.

Unfortunately, as positive as mum was, the illness started to take its toll and make her life more difficult and started to take medication which gave her bad side effects and her singing had to take a back step. In fact, it had a big impact on us all and even I had to stop going to my ballroom dance classes as dad couldn’t take me. It was hard for me and dad to see the person we both loved so much not being able to do what they wanted.

Eventually dad had to help mum with dressing and washing as it became too difficult for her. She started to use crutches to aid in her walking, but this did not last for long as she was falling and needed a wheelchair. She was looking depressed and started to feel a burden and dad would say to her: “In sickness and in health”. It became a round-the-clock job for him as mum’s disability was progressing and needed the care on a one-to-one basis. Dad, being a proud man, didn’t want carers from the community to do what he was more than capable of doing it, and better. “This is my wife, not a telephone number,” he would say.

Mum was finding it difficult to swallow and we had some near issues of choking, and at one time it was so bad we had to rush her to hospital – we can still remember that July day in 2001. It scarred us both. They advised that a peg tube be fitted to be able to feed mum directly into the stomach through a pump machine as swallowing even blended food was hard and drinking was dangerous as she aspirated (food or water goes into your lungs as you have no control over swallowing).

Her breathing became problematic as MS is a muscle weakening disease and she had to be given oxygen. Things were becoming harder in all our lives and were now becoming housebound and my dad was physically and mentally tired he never moaned, he just did what he wanted to do and that was look after mum.

It became even harder for him as mum started to have cognitive problems where it affected her speech and thought, so communication was very hard. This was putting stress on mum not being able to get words out but dad had a lot of patience and started to understand what the mumbled words meant, and would ask mum is this what you meant? If it is right then blink once. There were times when mum could blink once almost straight away, but MS at times makes it difficult and if she was not able to blink dad would think he had misunderstood her, and then she would have forgotten what she was trying to say.

Dad hoisted mum in and out of bed and into the bath with system fitted to the ceiling – this took the strain off him doing too much physical movement. Toileting became the biggest problem as mum became doubly incontinent. It became so out of control she needed to have a supra pubic catheter fitted into the bladder from a hole below the naval and unfortunately she also had to have a colostomy.

Dad was in a better frame of mind; he would say to mum, just think of how life would have been 100 years ago where these interventions were not available. This was dad being dad and converting negative thoughts to positives. He was always offered respite but he couldn’t accept it as he was so devoted to my mum.

Sadly on August 25th 2011 mum died and we were both heartbroken. She was 48 years old, too young. But on that sad note, we have all the good memories to look back on and we both believe that some day we will meet up again, and hope that mum has found perfect peace.

Jobs for the (able-bodied) boys?

We are delighted to welcome Nikki Amanda Kyriacou to our blog. Nikki, who is a graduate of Photography, will be posting occasional articles as well as doing some photography for the site. Here is her first blog.

My dad is in his 50th year and is currently trying to get back into employment, after being a full time carer for my mother for 12 years. She sadly passed away last August and he did not anticipate the struggles of finding a job, particularly as he has a degenerative eye condition.

Disabled man reading
Reading the small print: For people with a disability or visual impairment finding work can be very difficult
Organisations like Remploy are supposed to be here to ensure the help and support for disabled job seekers. This has recently been highlighted in the media as untrue, as they are proposing to sack over 1700 of their employees with a disability and close down several factories (Independent: 7th March 2012).

Dad joined a work programme run by A4e known as Bootstrap. Here, he is assigned a one to one adviser who currently guides my dad to find work in what he can do now. It has been hard, as jobs are very thin here in the North West of England. It seems that most jobs are geared up for people who don’t have any disability, and sadly there have been no jobs for which dad has been able to meet the criteria.

He is a skilled man, but has had to reconsider his options because of his low vision as he would not be able to fulfil the job he trained to do. It’s been so difficult, that he has not even been able to get a job interview as of yet, which being such an active person and has always worked, makes him a little despondent.

The way a lot of people in a similar situation are trying to get back into employment is not trying to find work in what they were able to do in the past, rather what they are able to do now. I just hope that the majority of employers see beyond the disabilities that people face on a daily basis, and for them to look at a person’s ability and experience.