Michael and Barbara’s story

In 2009 Barbara was diagnosed with Parkinson’s disease. She is very frail and suffers exhausting bouts of dyskinesia – hours of uncontrollable movement interspersed with spells of freezing and rigidity.

Her condition is only going to get worse and she has lost her independence, relying on Michael to cook, clean and dress her.

Michael shares their story:

“She has lost her independence and I have lost mine.”

Barbara’s Parkinson’s has got to a very difficult phase after 15 years. It was inevitable, but it really sneaks up on you. Initially the diagnosis didn’t make much difference but now she’s got no independence at all – none whatsoever.

She falls a lot and hurts herself: Damaged arms and shoulders, torn tendons, concussions – it changes your life completely. She has lost her independence and I have lost mine.

We are part of a local Parkinson’s support group but since Covid we haven’t been able to take part in the activities as Barbara hasn’t been well enough — it has left us feeling really isolated.

“What have we got to lose?”

I first heard about the Living Well programme when it came through on an email. I thought to myself, ‘what have we got to lose?’

Life has become very difficult lately and this really came at a good time. We self-referred and have now completed our sixth Living Well session.

Having never been to a hospice before I didn’t know what to expect – I just thought what a lovely place and what a calming atmosphere.

Parkinson’s is dreadfully isolating. You feel so alone at times but it’s great to know that there are people who are here to help, and it makes a big difference. It’s great to have someone to turn to.

“Everybody we have met has been absolutely brilliant.”

This really is the beginning of another journey for us, and we have no idea where it’s going to take us, but we are ever optimistic although Barbara’s Parkinson’s is never going to get better. It’s a progressive disease which just gets worse and worse, but having the team at St Barnabas there for us is going to help us cope. We’ve got to try to keep going.

We felt so welcome when we first arrived, and nothing seems like too much trouble. Everybody we have met has been absolutely brilliant. We have already passed the information on to other friends in a similar situation.

Barbara’s Parkinson’s nurse has also referred us which means we will have access to some additional support and activities. It’s really worth pursuing.

There are some activities that hopefully will suit Barbara. There’s physiotherapy and activities such as gardening and cookery. Barbara is a good cook but she can’t do the physical bit anymore, but may be with the help and facilities laid out here she might be able to do a bit of cooking again.

The Wellbeing Programme has helped us with fatigue and energy conservation. When Barbara gets a spell of dyskinesia it can be exhausting and can take days for her to recover.

There’s also support with exercise, diet, and planning ahead. Although we were aware of much of the basic information through the Parkinson’s group there have been additional things that we’ve learned through each session.

Since we told our friends about the Wellbeing programme they have now self-referred to St Barnabas and are about to start on their new journey. We are so pleased as they have much the same issues with day-to-day living as we do and we are certain that they will gain a lot from the experience.