Living With Multiple Sclerosis – Steve’s Story

I’m Suzanne, Client Relations Manager for Access Care, a specialist recruitment

agency helping people find Live-in Carers throughout the UK. This is a personal

account of one of my wonderful clients Steve and looks at how he and his wife

live with his Multiple sclerosis.


Steve

Steve was diagnosed with MS in 1988 and when I asked him if he would help me

to write a case study about living with Multiple sclerosis his response was, "if it

can help anybody else who’s suffering with MS and the carers who are caring for

an MS sufferer, I would be more than happy to help you".


Steve used to own his own business, based in Chandlers Ford, printing magazines

and books. He noticed that his eyesight was deteriorating, and he was getting a

tingling sensation in his face. Steve had no idea what was wrong and visited his

GP, who referred him to a neurologist. The neurologist checked for abnormalities,

changes to his vision, eye movements balance and co-ordination.


After many tests, including MIR scan they found many lesions in the brain and he

was diagnosed with Multiple sclerosis. Steve remembers feeling overwhelmed,

he did not know much about MS and how it was going to affect him.


Before MS Was Diagnosed

In 1995, Steve met Louise, not known to them at this stage, they were soon to fall

in love and marry.


When they first met, Steve was able to walk with crutches, for longer distances

he would use his wheelchair or scooter. The only support he was receiving was

an evening meal being delivered.


Steve and Louise

They first spotted each other on the minibus that collected everyone going to the weekends when they went for pub lunches and swimming for the disabled,

however, Louise admits that they spent most to the time in the bar chatting rather than swimming!


Louise has memory problems and she explained that as their friendship grew,

they supported each other which gave both of them more confidence.


Louise had forgotten what it felt like to ‘love someone’ until she met Steve. She shared a conversation that she still remembers to this day, Louise – ‘I feel really strange, I think I’ve fallen in love with you’. Steve replied, ‘I have too’. In 1997, just after Christmas they moved in together, they have been married for 17 years and the romance is still there.


Passion In Life

In his younger days, Steve was the champion fisherman for Southampton, and he has won numerous awards for sea fishing. Fishing was his favourite activity, he used to live, breath and sleep fishing. That’s why it was so important to him that he continued fishing, despite having MS.


Steve out fishing

Nowadays, he goes fishing with Louise, accompanied by Steve’s ‘live-in carer. They go to Wetwheels Solent, where they experience the excitement of power boating and fishing. The boats are specially equipped for wheelchair users. Steve is really proud of the many fish he has caught whilst out on the boat. They have had many wonderful days out at Wetwheels, and it has enabled him to continue enjoying his favourite hobby.


Steve has always been determined to enjoy life to its full, and they told me how having a ‘live-in’ carer has enabled them to do this. They talked about how their life has improved since having a ‘live-in’ carer, together with the support they receive from Access Care. Without this support, Steve would be totally housebound and would not be able to do anything. Louise advised that their life would just crumble.


The MS has now affected Steve’s speech; however, it is really important to him, that his voice is heard. His carers have got to know him so well and they know what is important to him, so much that Steve is confident that they can express his needs and wishes for him.


Louise and Steve rely on the ‘live-in’ carer for everyday living, preparing meals, emotional support, helping them to enjoy exciting days and so much more. Even the smallest of things make a big difference, Steve no longer gets frustrated that he can’t change channels on the TV, he simply asks the carer. Louise described how the carers have supported them, emotionally, physically and practically, not only meeting Steve’s basic needs but ensuring he does not feel isolated and also help to build his self-esteem. They have built a two-way relationship with their carers based on trust and respect. Steve’s carers know his likes and dislikes, his preferred routine and they give Steve choice and control where possible, whilst protecting his dignity.


Steve and his Live-in Carer

Steve is now registered blind and is wheelchair bound. He relies on his carer for everything. He has built some great friendships with his carers and he shares wonderful times with them. Having a ‘live- in’ carer has enabled Steve to live his life as he wishes, he is able to make his own choices about what he does and where he goes.


They referred to the ‘live-in’ carers as being tremendous and invaluable and have made 100% difference. The carers have supported them through the highs, lows and everything in between.


COVID-19

Before the outbreak of coronavirus, Steve was regularly going to the gym, accompanied by his carer. COVID has meant that Steve is having to stay indoors much more, as he could be at greater risk. Steve and Louise are feeling anxious and whilst it is frustrating for Steve as he cannot get outside, he is enjoying the time at home with his Carer, watching and listening to fishing programmes on the TV. His Carer is also helping him to do some light exercises at home to ensure he keeps moving.


Today

Steve and Louise are so grateful for the support they receive from Access Care and for the fantastic carers they have introduced who have been carefully matched. Louise explained how happy they are and how the MS care at home they receive enables them to live a very happy life together as a married couple. She describes Steve as being fabulous and a fantastic husband.


I wish to convey my thanks to Steve and Louise for this insight into their MS journey.


Best wishes

Suzanne

Client Relations Manager

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