A carer has expressed her worry that the medical card will be taken from her fiancé who suffers from the crippling Huntington’s disease.
Anne O’Shea said she is struggling to keep her job and look after her wheel-chair bound partner Christy Clarke who needs full-time assistance.
‘‘We are struggling to keep the medical card even though there is no cure,’’ she told independent.ie.
‘‘When Christy was first diagnosed we never had any issue, his card has always been reissued.
‘‘Now all of a sudden there are forms I have to fill out to assess our situation. They want to know how far his spouse has to travel for work and details of our rental statements,’’ she explained.
When Anne forgot to include her rental statements she was sent a letter stating that Christy’s new medical card was on hold.
‘‘If we lose the medical card, we lose his dietician, physiologist and district nurse and these are all essential for Christy,’’ she added.
Huntington’s disease is a neurodegenerative genetic disorder that affects muscle coordination and leads to cognitive decline and psychiatric problems.
‘‘Christie can’t do anything for himself, even when he has a cigarette, you have to hold it to his mouth,’’ she said.
In January, Anne contacted RTE’s Liveline to explain how smoking is the only pleasure her fiancé has in life.
Christy’s muscles have deteriorated as a result of the disease and Anne has described it as ‘‘devastating’’.
He was diagnosed in 2004 and his condition gradually worsened with him needing full-time care.
‘‘Initially when I looked up Huntington’s, my heart broke. I could see no future, neither could Christy.
‘‘He was aware as his father had it but thankfully we have come out the other side and have proved that with proper help, care and love, you can have quality of life but it is essential that you get the services on time,’’ she said.
Christy currently receives 38 hours a week from a HSE care worker which has allowed Anne to continue working.
‘‘I work in an office and my boss is very kind. When I got to a point where I said I can’t do this anymore, they worked around me and let me work from home sometimes,’’ she said.
The couple are set to marry on May 4 in Limerick and 130 people are expected to attend.
Wedding planners from Co. Clare ‘Perfect Details’ heard Anne speaking on RTE Radio One in January and offered to help the couple with their wedding to make the day extra special.
‘‘We have been through some extreme highs and lows with the disease over the last 13 years, we were planning on getting married much sooner than now but the disease got in the way and took over our lives,’’ Anne said.
he couple met in Cyprus in 2001 and were engaged within a year, before Huntington’s disease took hold of Christy.
Christy had warned his fiancé that the disease ran in his family.
Anne believes there is a stigma attached to Huntington’s disease because very little is known about it.
She said the nurses, carers and volunteers that work with her fiancé give him ‘‘the will to live’’.
Huntington's Disease Association of Ireland (HDAI) has provided information and vital support to Christy and his family members.