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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. Around Christmas 1998 she suddenly found it very difficult to walk down any slope, and then the wheeled frame began to run away from her and she was falling a lot on her knees and getting exhausted stretched out trying not to fall. She then progressed to a wheel-less frame that had to be lifted in order to walk. I also acquired a frame with two wheels and two little sleds but that was not very successful. I then managed to acquire a motorised wheelchair through the Victorian Aids and Equipment Program (A&EP). I also purchased a light transit wheel chair. This combination provided a safe means of mobility. By late 1999, there had been further changes in Patricia's condition. Her speech had become more slurred, and she often found it difficult to articulate. She was getting very tired and found it difficult to keep up with her reading. With the support of her neurologist, I arranged for another neurologist with an interest in genetics, to see Patricia. The verdict was that she had some form of MSA which is levadopa-responsive. No one was able give a definite diagnosis or prognosis. My belief was that she had the SND form of MSA. 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. Quite early on in the illness, Patricia started leaning to her right when sitting in any of her chairs or sitting up in bed. No matter how much I propped her up, she ended up leaning to her right. Her Neurologist thought that it was probably as a result of a minor stroke or series of TIAs (Transient Iskemic Attacks) but reasoned that it wasn't worth exploring further as there was nothing that could be done for it. Then one day I noticed that Patricia was leaning to her left side. I found myself transferring her pillows and cushions to her left side to try and keep her upright. Then about a week later, she was sitting quite upright and didn't need any support at all. Then she started fluctuating between leaning one way or the other or sitting upright. I can only assume she was having occasional TIAs. . 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 is right handed). Her voice was very weak and tremulous and she was very hard to understand most of the time. She used a light writer to communicate when her voice was failing her. She no longer swallowed involuntarily. Each swallow was a conscious action. When eating or drinking, her first swallow took quite a long time, often as long as 30 seconds. She became prone to choking episodes caused by mucus residing in the back of her mouth and then going down the wrong way because she had failed to swallow it. Sometimes the choking episode was caused by regurgitation and the contents of her stomach could end up going down her windpipe. She emitted frequent involuntary sighs which seemed to be loudest early in the morning before she took her first medication. On 18 April 2001, Patricia had a supra pubic catheter inserted. 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. Disclaimer The information contained
on this Web site is intended as a guide to assist visitors to this site looking
for information on MSA and related issues. It is not a
substitute for diagnosis, prognosis and treatment provided by a qualified
medical practitioner. Some people, particularly those in the early stages
of MSA, and/or their Carers, might find some of my information upsetting.
In addition, this site provides links to other Web sites that contain information that may be of interest to visitors to this site. I recommend people check out these sites, but I can not guarantee the accuracy, completeness or timeliness of information presented at these sites. John Cummings aka the World Wide Wombat Melbourne Australia Click here if you wish to contact me This page was last updated on 05 May 2004. |