This is a story with a difference; two lives changed drastically by health. Meet Paul and Judy Powell.
Paul and Judy met in the 70s at their local disco in Macclesfield (Paul proudly donning his fabulous highly shone, brown platform shoes). They were married in 1976, aged 23. Paul was working for North West Gas as a mains and service layer, a job that he loved. They had only been married 18 months when Paul started to feel unwell, getting very tired, being sick and having chronic head pain. Aged 24, Paul was sadly pensioned off with ill health.
After much back and forth (many tests and an operation) the most likely diagnosis that the medical profession could come up with was Cerebral Lupus. The couple were told that Paul was also likely to have DNA problems so they took the difficult decision to not have a family of their own.
Cheerfully though, they both have huge smiles on their faces when they talk so fondly of their well-loved rescue dog Dexter, who will often sit for hours next to Paul.
This simple story cannot do justice to 38 years of poor health. Judy managed to work full time until about 5 years ago, when Paul’s health deteriorated further. Paul’s current problems are Encephalitis, neuropathic pain, epilepsy, poor co-ordination/balance and falls. Up until two years ago (with the support of friends), they used to go on holiday to Jersey, a place very dear to their hearts as that’s where they got engaged.
“One of the hardest things to come to terms with is realising that we can’t go back.”
Fast forward to the present and with advances to medical science, the couple (now aged 60) have recently found out that Paul does not have a diagnosis of Cerebral Lupus. Even more bewildering is that the medical professions can’t actually name what is wrong. For 35 years he has been misdiagnosed. After a medical referral, Paul started to attend the Day Hospice this year. “The word hospice frightens people. I can’t stress enough that you don’t need to be frightened. The people are wonderful, I think the nurses are like angels and the doctors are so helpful.” Paul found reiki really helped him and he has also been taught to paint in the art therapy sessions at St Luke’s; he is starting his third painting.
Paul has also thoroughly enjoyed having a normal natter with people. “It has been wonderful to have some male company and banter. Phil likes to take the mickey a bit and Rick the chaplain has been a real support to talk to. It is great too that if I feel ill whilst at the day hospice, there are trained medical staff to help and talk to which makes me feel more at ease.”
Paul has recently had some respite time on in-care. “We can’t thank all the staff enough, nothing is too much trouble. The kitchen staff too – put plainly, if you want three sweets, you get three sweets.”