Early Stages

Although she had been falling for some months, sometimes tripping, sometimes just flat on her face, the number of falls definitely increased after her change of medication in late December 1997, when she would become very sleepy and disoriented late morning. These periods of disorientation seemed to occur about two to three hours after her 11.00 am medication. In about April 1998 she started to use a four-wheeled walking frame. The physiotherapist from the Movement Disorders Clinic explained about the various Parkinson strategies including concentrating on only one thing at a time. She also suggested that Patricia keep a log of her falls to see if there was any correlation with the medication. She had periods of up to one week without any falls, and then started having as many as three or four in one day.She started a new medication regime in December 1997. At first she did not feel any great effect but soon began to notice that, although she did not slump after 3 hours as she had before, she began to have periods when she was very sleepy, not alert and began to fall and stumble a lot. She also had periods when she was half asleep or “waking dreaming”. She thought this was hallucination and actually believed that she did have several hallucinations.1998 was a year of fairly rapid decline.

In April 2000 Patricia had her first choking episode when she choked on her breakfast cereal. That was quite scary for both of us. In June 2000, she had a PEG inserted into her stomach. PEG stands for Percutaneous (through the skin) Endoscopic (the method of using a lighted instrument to assist in the tube placement) Gastrostomy (surgical construction of a passage into the stomach). She then started having one third of her daily food intake as an enteral feed (gravity drip feed) and the other two thirds vitimised as close as possible to a honey consistency and consumed orally. All her drinks were thickened to a honey consistency and all her medications were crushed and dissolved in water and administered via the PEG.

By March 2001, Patricia became wheelchair dependent. She could stand as long as she was holding onto bars or someone had a firm grip on her. She could walk only a few steps with someone holding her. She showed signs of incontinence and had frequent trips to the toilet. Her handwriting had become non existent but she could type on her PC keyboard using one finger on her left hand (she was right handed). Her voice was very weak and tremulous and she was very hard to understand most of the time. She used a lightwriter (see Equipment section) to communicate when her voice was failing her.

By then, Patricia was finding it more difficult to swallow and there had been an increase in the number of choking episodes. Probanthine (Propantheline) was added to her medication to try and dry up her secretions. We also cut back on dairy products and were using the nebuliser more often. I had been instructed to give her liquid morphine when she was clearly distressed as a result of a choking episode.

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