Adapting Together
Married couple Steve and Cathy both use the therapy and support offered at Merlin Cornwall’s Neuro Therapy Centre. 63 year old Cathy was diagnosed with Multiple Sclerosis (MS) 17 years ago. Less than a year later Steve, 62 was diagnosed with Chronic Inflammatory Demyelinating Polyneuropathy (CIDP). Both use to leading active and physical lifestyles, the couple share how a diagnosis with a neurological condition has impacted their lives and how the Centre has helped put life into perspective.
Cathy had been suffering with increase tiredness for many months but put it down to her physical job as a cleaner, back to back jobs with little breaks in between. However a phone call to Steve one morning asking him to come pick her up as she physically couldn’t move was the start of a series of tests to determine what was causing her crippling fatigue.
‘We are both introverts, but walking and my job as a cleaner meant I could keep a level of social interaction I was happy with. I continued working for as long as I could, Steve would help me complete jobs as he knew how important my job was to me. However, when I finally had to give up due to my increasing symptoms it meant I was left grieving for the life I use to have. I felt very alone and my mental health suffered. I didn’t realise just how alone I would feel without my job.
I first came to the Centre not for symptoms of MS, but for pain caused by Sciatica. My doctors had told me they wanted to inject into the spine and the expectation was that an operation would be needed in the near future. They suggested using hydrotherapy at the Centre may give some pain relief.
Problem was I was absolutely petrified of water, however I was determined to get better and pushed myself to use the pool. The first time I walked into the water I was shaking with nerves. Over time, with guidance from Sue (Physiotherapist) and Carol (Physiotherapy Volunteer) I started to get over my fears. We played games and splashed which meant slowly my confidence grew in the water.
I can stand unaided in the water now and have noticed that where Steve use to help lift my legs into the car I don’t need that help anymore. My fatigue is also lessened. Sometimes I can do a session in the pool and have a boost of energy enough to hoover the lounge! Recent follow up appointments with my specialists have also said that due to the exercise I do atthe Centre it is unlikely I will now need to have an operation on my back.
The team at the Centre give me the encouragement and motivation to try and not give up trying.They have helped me understand the benefits to the exercises I am doing. I am so proud of whatI have achieved.
However for both of us the social side of being with people who understand is the mostimportant part, we really didn’t realise how isolated our lives really were before.”
Former mechanic Steve has always been some what of a practical problem solver and wasalways at his most content fixing something.
Steve admits to being a fairly shy individual and his solution since a child was to walkeverywhere twice the spend as anyone else so he didn’t have to make conversation.Adopting a ‘Head down and go, was my philosophy.’ Not long after Cathy’s diagnosis I noticed myself struggling to keep up with her walking. I knewthere was a problem when I had to ask her to slow down. It was like my legs just wouldn’t workproperly and my balance was also not great.
I noticed that when I was doing DIY jobs around the house the dexterity in my fingers was off. Ihad little control when holding small objects and the feeling in my fingers had changed.’
Cathy’s pleaded with him to go to the doctors which eventually he did and was given the diagnosis of Chronic Inflammatory Demyelinating Polyneuropathy, an autoimmune condition which causes gradual weakness or sensation changes in the arms and legs. “My practical problem solving mind has provided me with my biggest strength and that is my ability to adapt. Both being diagnosed with serious long-term conditions within such a short space of time has been really difficult, but we have each other and we understand each other. Neither of us regret our conditions, it has taught us that life is what it is and we have a sense of appreciation for what we do have. I attend weekly group sessions in the hydrotherapy pool where they will work on my balance but the most important thing to me is the social aspect of our time here at the Centre. Having the right people around us is important and we find that here among people who really understand and care.”