“My husband Paul was diagnosed with Motor Neurone Disease in 2015. As Paul has ALS (a form of Motor Neurone Disease), the progression has been very slow and initially involved walking with a stick, then a rollator, and sometimes a manual wheelchair.  

“Up until August last year I was caring for Paul 24/7. He then had to move to a bedroom downstairs and had a buzzer he could press if he needed anything during the night. He was getting me up two or three times a night to go the toilet, which is when we managed to get carers to come in overnight. This has been a great help, but I am still solely responsible for care during the day. It has got to the stage where I have to do almost everything for him. He needs help to go the toilet, and I make all meals, help him with eating, sort out medical appointments and take him to them.  

“The biggest challenge for me is not being able to do what I want without having to think about Paul’s needs. This sounds very selfish, which it is, but because I have always been a very independent person, had my own career, always liked going on holidays and socialising, I have found it very hard to cope with the limitations of our situation.  

“I have had wonderful support from my family. Our two daughters have been fantastic and help out with looking after Paul whenever they can. One lives in Surrey and one has a young family and is also working, but I know they are there whenever I need them.  

“I also have great support from my two sisters and brother, and friends have been very good in coming round to see Paul and being with him if necessary. Recently we have found a small business locally who provide care as companions, shopping and medication assistance etc, so we may well utilise this in the future.  

“I have also had the support of an MND visitor; because of Covid we have only recently been able to meet up but have had monthly telephone contact for a year or so now. 

“My advice to other carers is to try and get a diagnosis as soon as possible and to accept any help that is available. Also to think ahead a little so that things are in place when you need them, rather than having to sort something out as a matter of urgency. Admit if you need help and don’t just soldier on your own, and try and get some time for yourself to recharge the batteries. 

“I have always been interested in being fit and used to take part in Zumba and Pilates classes, as well as playing tennis socially and running. When Covid arrived I found classes online and continued with Pilates. Because I was registered with Carers UK I became aware of Staffordshire Together for Carers, which provide a range of free classes, and through them I take part in a weekly yoga class. My sister introduced me to an organisation called Goldster, which initially was free, who provide lots of different exercise classes as well as relaxation ones. They now charge £9.99 per month but you can take part in as many classes as you wish, and they now also include cookery, painting, reading and many more activities. Because of the time restrictions in being a carer I have found online classes an absolute godsend, and would not want to be without them.  

“I was interested in taking part in the Carers Active Stories video project because I strongly believe that exercise is essential to wellbeing and it is important that this message gets across to everyone in a caring role.  

“If you’ve never exercised before there are plenty of classes for beginners. Don’t feel intimidated about the prospect of joining a class; everyone has to start somewhere, and it will make you feel better, stronger and more positive about your situation, and make you more able to care.  

“I particularly enjoy gardening and am able to lose myself in the garden and the plants. Even if you are only able to go for a short walk around the garden, local park or street, please do it as it will help you remain focused when you return to the daily routine.  

“As well as the physical activity of exercising, which is known to produce endorphins, the chance to spend time, even if only half an hour, away from a caring role, is invaluable. It is time to spend on yourself, to forget all the other things that need doing and get away from stress.”