Caregiver Stories: Corticobasal Degeneration

John by John & Lynne Dams

John worked for Rolls Royce (Aero Engines) at various jobs, retraining as a turner at the age of fifty-seven. Some said it was too much to take on at this time of life. However John coped well and was happy in his new job.

We married in 1993, this being my second marriage; John was a bachelor who had lived with his elderly Mother. We cared for her jointly until her death in 1996 at the age of 86. John helped around the house cooking, washing up, gardening, DIY etc, we got on famously. He enjoyed playing golf and has won many trophies and cups. He also enjoyed motor cycle restoration and riding a bike of his own. At the age of fifty-eight John was offered early retirement, we thought about it and decided we could do so many things together, we enjoyed walking and had holidayed in Scotland, Yorkshire, and Lake District as well as locally; so John retired.

However some eighteen months later at sixty John developed problems with his walking. His left leg, as if it was on a spring, would suddenly have a mind of its own. Also his left arm would rise on its own. He also experienced problems finding light switches and hammering and tightening screws when doing his DIY. Golf became harder as his hands would waver about for a few seconds and he had little control of the club. Also the grass looked vivid green and he had the feeling of it coming up towards him. He had weight loss - some two stone, along with this there was muscle loss and weakness. He lacked strength in everyday tasks, indeed some tasks became impossible.

We had several visits to his GP who dismissed the things we were saying. Eventually he agreed to send John to a neurologist, however the waiting list was so long and we were very concerned so we decided to pay privately. The neurologist wanted an MRI brain scan done, again the NHS waiting list was so long we went privately. However we were also placed on the NHS list. The scan cost us £1,000 but at this stage we wanted to know the outcome as soon as possible. The scan showed brain shrinkage but no lesions or any sign of any other condition. The neurologist first thought John had "alien limb syndrome". More tests by way of an electro-conductive test showed that the nerves in the arms and legs were working properly thus supporting the alien limb syndrome. The presence of alien limb syndrome pointed to the diagnosis of "Corticobasal degeneration". The NHS brain scan was performed eighteen months later and showed shrinkage as before. John's appetite by this time was poor. He ate little and often and his walking became worse.

At this time John changed his GP. I had been with this GP for several years. He is very supportive and got information off the internet for us. He sees John on a regular basis to keep an eye on his blood pressure etc. Balance is now a real problem. John cannot carry cups of tea, plates or anything breakable as his legs have a will of their own. He is jerky in his gait and his arms tend to rise on their own. He walks round with the aid of a stick indoors but a wheelchair is needed outside. John cannot manage buttons or zips, he cannot undo bags or bottles, he has no feeling in his fingers and is very clumsy and has no strength. I have to remind him to take medication as his recent memory is poor. I also put his clothes out for him each day. John's writing has become very poor, his hearing is affected and he is sensitive to sharp noises. He can only take in limited information at any one time. His eyesight is ok at the moment (double vision can be a problem with this condition but there are no signs at the moment). Showering is difficult as closing his eyes to wash his hair takes another sense away. We have had rails fitted to the wall, lever taps have been fitted and I help. John also has an electric razor as wet shaving was becoming hazardous. He was taking chunks out of his face due to his hands not working properly. John needs help with cutting up food as he has little control over his knife and fork.

John has lost his independence, he cannot play golf or even go out into the garden on his own; we are adapting the garden for the summer. John has not been able to drive for eighteen months so goes nowhere unless taken. The cold weather affects him, his neck, jaw and shoulder muscles tense up, and his speech too is affected by the cold. John likes a drink, one or two nothing more, but this affects his speech and walking. The use of an aromatherapy cushion round his shoulders helps the muscles in his neck. The wheelchair has been a godsend. We go out most days; I like him to have fresh air and a change of scenery.

John and I laugh a lot and try not to look on the black side of life. We really don't know what the future holds for us. John has signed an Enduring Power of Attorney and made a living will. We have a good family and good friends. We have two grandchildren (I have two boys from my first marriage) who adore John and he them.

In the early stages people tended to look at John as if he were drunk, now they look at him as much as to say "he looks alright what's he doing in a wheelchair?" John can talk to people and explain and so put them more at ease with the situation. We have a blue badge for parking. John gets very cross at people parking in the disabled spaces and thinks it should be made illegal by law.

John has deteriorated quickly during the last six months; we don't know how fast it moves from now on. We decided if we worry about this we lose what we have. It took us a while to accept John's condition (these things don't happen to us only other people) but it has and we live every day for the day, not ever losing sight of each other. Our doctor is a great support as is the newsletter from the PDSG but a support group specific to CBD would be a help.

John & Lynne Dams.

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If you would like to write about your experiences related to caring for someone suffering from Pick's Disease, please send your final copy to either Carol or Penelope.

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