Anne and Christy's Story

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'Anne and Christy's Story' image

Anne and Christy's story is one of a number of personal stories which people have shared as part of the "We Need Our Heads Examined" campaign for rehabilitation services.

Download the campaign leaflet here

 

My husband Christopher Clarke, 46 years of age from Dublin was diagnosed at 30. I met Christy in Cyprus in 2001. We got engaged, planned to buy a home, have children. Our hopes were shortlived as Christy had inherited his father's Huntington's disease. Christy lost his job as a security man in the GPO. Christy's first signs were slurred speech, poor balance and tremor of the hands, all of which appeared to show signs of drinking while on duty which was not the case. Getting diagnosed was slow, nine months. Christy lost the use of his hands, walk, swallow, speech not to mention the job, friends and independence. We fight every two years to receive the medical card which allows us access to the community nurse. Any delay is detrimental in getting much needed early intervention by the speech and language therapist, occupational therapist etc. Unfortunately we do not receive physiotherapy. We have to pay for physio and hydrotherapy weekly on a private basis. This helps prevent chest infections and also to keep muscles strong, which helps Christy to assist me in his home care. We would love to see a daycare centre for young people with neurological disorders for companionship and specialist therapy giving quality of life.

 
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