LIVING WITH PARKINSON’S

May 12th, 2016

Daughter and carer calls for greater support levels.
Sheila Heffernan

Muhammad Ali's decades living with Parkinson's Disease has highlighted the disease's degenerative impact.

At present, there are 12,000 people in Ireland diagnosed and living with Parkinson’s Disease. The recently held Parkinson’s Awareness Week (supported by AbbVie Ireland), according to AbbVie’s Todd Manning, highlighted the “urgent need to make everyone aware of how difficult living with Parkinson’s can be”.

He added: “We wanted to not just highlight the difficulties that people living with the disease go through every day, but also to applaud Ireland’s neurologists and front-line healthcare professionals who are doing incredible work in challenging conditions.”

Parkinson’s is, unfortunately, a growing issue, and one that is affecting more and more Irish families, with support for those who have the disease – as well as those who care for them – not at satisfactory levels.

Someone who knows this all too well is Waterfordian Bernadette Myler Driscoll, whose mother developed the condition in 2006, when aged 65, having only recently retired at the time.

Bernadette recalled that her mother felt unwell while attending a wedding in the UK. “She didn’t feel right and tripped and she passed no remarks,” she explained.

And it was only when she returned home and was sent by her doctor to a consultant in Cork that Parkinson’s was first mentioned.

“It was a big shock.” Bernadette said. “She worked hard all her life, having just retired and hoping to go off and do a few fun things with Dad. I remember being so upset and horrified that she had it…I was thinking ‘this is going to be a nightmare for her’”.

Caused by the lack of dopamine being produced by the Substantia Nigra in the brain, Parkinson’s affects the nerves ability to receive signals.

This can cause involuntary movement, such as a shaking in the hand and difficulty moving voluntarily or speaking. As a progressive illness, these will slowly worsen with time, although they can be controlled by medication.

A lifetime of work has caused Bernadette’s mother to develop back problems, trapping her siatic nerve between disks in her spine.

“The ‘Parkinsonisms’ like the walk and bad circulation are all exasperated because of the back,” Bernadette explained.

And although they applied several weeks ago to see an occupational therapist, they are as of yet still on the waiting list. “It feels like no-one cares – the service is wrapped in a knot of administrative ‘BS’,” Bernadette exclaimed.

This is not helped by the fact that, due to lack of resources, there is no specific physiotherapy available for people with Parkinson’s to help maintain their maneuverability.

“I was talking to a few women who said they got eight hours of physio in the whole year,” stated Bernadette.

Not only does this mean that those with the condition will lose their manoeuvrability faster, they will also have to depend all the more on their carers.

“In terms of help, there’s no focus, no support for carers,” Bernadette explained. This added dependence on carers means that they have no time to themselves, as they worry about leaving loved ones alone.

“You’re wondering what you’ll come back to,” Bernadette said. “A lot of carers are left becoming isolated.”

To help alleviate some the loneliness, and to meet others facing, in essence, the same scenario, Bernadette’s mother decided to form a ‘Parkinson’s Club’, affiliated to the Parkinson’s Association of Ireland (PAI).

They meet weekly at Waterford Cheshire on John’s Hill, where they enjoy different activities and organised trips.

“The club helps people feel empowered,” said Bernadette. Unfortunately, due to the stigma attached to the condition, not everyone attends regularly.

“Many who approach about joining don’t come because they don’t have transport and they don’t want people to know they have it…

“Motor neuron and neurological diseases have a stigma because people are scared…as there’s no way of knowing if you yourself or someone else in your family will develop the condition,” Bernadette added.

“You need to be made of stern stuff to be able to cope. If you’re not, the system doesn’t care, you’re lumbered with it,” she added.

In Waterford, the available neurological doctor who visits men and women with Parkinson’s must also cover Kilkenny and Wexford. State carers regularly find themselves short on time, given that they have to cover such huge areas.

“They don’t a get a chance to really talk to the people they’re calling in on because they don’t have the time. I think they’re great, but they don’t have the time,” said Bernadette. “The right tools aren’t in place to allow the system to cope.”

“Creating awareness of the serious impact of Parkinson’s Disease and the effect it has on so many people’s lives is vital” said PAI Chief Executive Paula Gilmore.

“The high level of engagement with our members and their families around issues relating to Parkinson’s shows us not just the seriousness of the disease but also the importance to those who live with it of the need for proper access to services and treatments.”

The PAI receives no government funding and depends on donations to provide services throughout 16 branches and a national office in Dublin.

“We will be calling on the newly-formed government to please put more focus on securing more resources, supporting the services offered by the Parkinson’s Association of Ireland and delivering the much-needed neurologists and nursing staff to alleviate the long waiting times for access to diagnosis and to treatment,” Ms Gilmore added.

With an ageing population, it is likely that more people will develop Parkinson’s in the coming decades.

Given Bernadette’s experience, it appears that the systems currently in place simply aren’t sufficient for those with Parkinson’s, along with those caring for them.

That appalling currently buzz phrase in modern health – critical mass – may the only means of forcing a positive change in the immediate to long-term future when it comes to additional resources being made available.

For more information about Parkinson’s Association of Ireland,

please visit www.parkinsons.ie

http://www.munster-express.ie/front-page-news/living-with-parkisnons/