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Living with late Parkinson's disease

The following story describes the life of Mr D, who has the latestage of Parkinson's disease.

Mr D spends much of his time sitting in a chair listening to the radio or watching television with the other guests in the home. He experiences unpredictable fluctuations between being able to move freely, having jerky movements and being ‘frozen' as a result of his treatment.

He is very unsteady on his feet and has experienced a number of falls. However, sitting is also often uncomfortable; when his medication has worn off, he cannot control the shaking of his arms and legs and his muscles can become rigid. When he does manage to get up, he finds that he often "freezes", unable to move when he tries to walk. Or his steps become smaller and smaller, so that he shuffles.

Sometimes, he finds it hard to make himself understood when asking for things. His voice seems to have changed becoming softer and less clear. Mealtimes are difficult: he sometimes finds it difficult to chew and swallow, and he needs help from the nurse.

The days pass in a blur: he often can't remember what day it is, or the names of the people sitting next to him. He usually falls asleep during the day. Mr D feels depressed as he knows his condition is getting worse. He feels he is losing his dignity and the fluctuations in movement due to his treatment are becoming more unpredictable.

Mr D dreads going to bed as this is when the tremors are at their worst: his legs feel like they are tingling, he has trouble sleeping and the nurses have to turn him over in the night.

His story highlights that advanced Parkinson's disease can be severely debilitating and impacts on all aspects of a person's life.

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