Living with advanced MS

Judy Graham, 76, was diagnosed 50 years ago and is now in the throes of advanced MS. But she says there are many things you can do to lessen the impact and life can still be enjoyed

As a child, I was always told, “If you haven’t got anything nice to say, don’t say anything at all.” There is nothing nice to say about advanced multiple sclerosis (MS). But I do feel it can be helpful to tell what it’s like so as to know what’s coming and make plans.

With any luck, younger generations who take DMTs or have had HSCT will be spared ever getting advanced MS as both seem to protect against it. If I had my time again, I’d definitely do one or the other along with diet, exercise and natural therapies.

The main thing to say about advanced MS is that all your symptoms are ramped up a notch or three. It’s like loud background noise you can’t turn off. The usual suspects are all there but more so – bladder, bowels, fatigue, pain, useless legs – the lot.

But with advanced MS you also get new and rather scary symptoms. I can no longer weight bear, which means I can’t stand without support. If I try, my legs just collapse beneath me in a crumpled heap. I’ve injured myself a couple of times from bad falls. The safest place is bed, but it comes with the risk of your muscles disappearing to nothingness.

Another new symptom is difficulty swallowing. Not a day goes by without me loudly coughing and spluttering when food or liquid nearly goes down the wrong way. What I’ve learned is that you must eat and drink slowly and carefully, in an upright position – never lying down, and never talking at the same time. If not, there’s a real risk of food and liquids getting into the airways and causing aspiration pneumonia.

Then there’s pressure sores which can happen when you’re in the same position for hours on end. If pressure sores are left to develop, there’s a risk of sepsis – blood poisoning. So, my evening carer checks every night for the first worrying signs. Both aspiration pneumonia and sepsis need hospital treatment and can be fatal.

Loss of independence

Thanks to advanced MS I’ve had to wave my independence goodbye. My carers perform intimate things for me I never thought I’d ever let anyone do but now I don’t mind.

Living with advanced MS you will almost certainly need one carer, maybe more. If a family member can’t do it, you may be eligible for social care from your local council. But if you have assets – property and savings – above £23,250 you must pay for all care yourself.

Aids and adaptations

Aids and adaptations may sound dull and boring, but they can make an enormous difference and can truly transform your life for the better. I have so many aids and adaptations, my bungalow looks like a nursing home, but they make the crucial difference between thriving and struggling.

The good news is you can get many things free. Your local council can pay for up to £1,000 worth of essential aids if there’s a health need, which of course there is. An occupational therapist will come to your home to see exactly what you need.

My occupational therapist is like a fairy godmother to me. She’s given me so many things that have transformed daily life – a toilet surround which helps you get on and off the loo easily, a raised toilet seat, grab rails all over the place, ramps to the front and back doors, a sturdy commode by my bed, a Mangar lift to help get me off the floor, a monkey pole above the bed to haul me up, and extended cabling so I can buzz open the front door from my bed. A hospital bed and ripple mattress are on offer if I need it.

The only aid I paid for myself is the brilliant Etac Clean Shower Chair. The wheels lock firmly so you don’t skid all over the shower room floor, which flimsier shower chairs are prone to do. I once nearly had a serious accident because of it.

Accessible shower or bath lift

Having a wheelchair-accessible shower room or a bath with a bath lift become essential. It turns getting clean from an ordeal into a pleasure. You may be able to get a Disabled Facilities Grant from your council to put one in. It won’t win any beauty awards but will do the job.

Ideally, your bedroom and shower room need to be on the same level. My carer Linda also looks after a disabled woman whose bedroom is on one floor and the bathroom and toilet on another.

As the woman can’t manage stairs, she can only have a bed bath and use the commode by her bed. It’s hugely inconvenient and means poor Linda has to lug bowls of hot water and the commode up and down the stairs several times a day – a real chore.

Having advanced MS is not all bad. I read, I write and watch more catch-up TV than one strictly ought to. I chat to friends and family. My trusted Samsung tablet computer is a wonderful window on the world so I’m in touch with what’s going on and don’t feel cut off. All this works a treat in distracting me from my ailments.

Most of all, I dote on my baby grandson and want to be around for as long as possible for the joy of seeing him grow.

Help with my research

Recent research from Norway published in the British Medical Journal found a connection between bad mothering in early childhood and an MS diagnosis later in some women. The worst behaviours were sexual abuse, neglect, humiliation and a chaotic home. The emotional trauma led to a weakened immune system. The doctors writing the article state this is because there is a direct connection between emotional and psychological trauma and physical symptoms in the body. I am working with Dr Louise Dawson, who has a PhD in Sociology and also has MS. She is writing a paper on this hopefully for a medical or sociological journal. I am searching for case studies. If this rings any bells with you, please contact me. All cases will be anonymous. Please email me on judygraham2146@gmail.com

Do you want more information about planning for a life with advanced MS? Read our guide to planning for a future with advanced MS.