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Nerves & brain
Parkinson's disease
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Full list of topics
Discovery :
Early symptoms
Path to diagnosis
Getting the diagnosis
Telling others
Information
Causes of Parkinson’s disease
Treatment :
Levodopa
Dopamine receptor agonists
Managing medication
The operation: Deep Brain Stimulation
Professional help
Self help
Parkinson's symptoms :
Tremor, loss of control
Movement
Embarrassing symptoms
Mental disturbances
Living with Parkinson's disease :
Redefining yourself
Keeping going
Work, career, benefits
Driving and journeys
Support and support groups
Parkinson’s UK and Parkinson’s disease nurses
Now and the future
Caring, care and carers
Advice to others
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Parkinson's disease
Subject index
Clip
Nerves & brain
>>
Parkinson's disease
>>
8-12 years
>>
Natalia - Interview 18
>>
Natalia is reluctant to change to a new drug and would like more opportunity to discuss it with her consultant.
Diagnosed in 1999, Natalia takes Madopar and Mirapexin but has times during the day when she feels weak, and has difficulty standing and understanding and participating in conversations.
Nerves & brain
>>
Parkinson's disease
>>
Over 12 years
>>
Geraldine - Interview 28
>>
For many years Geraldine found that finding a time when she could safely eat was almost impossible.
Geraldine was diagnosed in 1990. She was a single parent with three teenage children. She never-the-less succeeded in holding increasingly demanding executive jobs in the voluntary sector and was finally chief executive of the Charities Commission before retiring recently. And she is still working on many projects and committees.
Topic
Nerves & brain
>>
Parkinson's disease
>>
Managing medication
>>
Managing medication
Managing medication
>>
Parkinson's disease
>>
Managing medication
>>
Managing medication
Managing medication
Nerves & brain
>>
Parkinson's disease
>>
8-12 years
>>
Sharon - Interview 31
>>
Sharon can eat OK if she times her medication to fit in with mealtimes. If she doesn’t she has difficulty swallowing and may bring the food back up.
Forced by her Parkinsons symptoms to retire from a career she loved as a teacher Sharon turned things round by becoming a business woman creating the very successful Cake Bake Company.
Nerves & brain
>>
Parkinson's disease
>>
3-4 years
>>
Humphrey - Interview 01
>>
If the dose of Mirapexin pramipexole was too high Humphrey felt that it would be dangerous to drive because of falling asleep.
Humphrey was able to continue working as a writer, broadcaster and musician after he was diagnosed. Although his Parkinson’s was progressing fairly quickly he maintained a resolutely positive attitude, trying to solve each problem as it presented itself, such as voice recognition software when typing became difficult. He died unexpectedly of a heart attack in 2005.
Nerves & brain
>>
Parkinson's disease
>>
8-12 years
>>
John and Julie - Interview 02
>>
John had made a record of his feelings about Ropinirole which had been added to the Sinemet he was taking initially.
John’s symptoms started in 1999. He now has difficulty getting dressed and he is slower with walking, but he is grateful that his symptoms have progressed slowly.
Nerves & brain
>>
Parkinson's disease
>>
Over 12 years
>>
Alan - Interview 03
>>
Alan realises he understands his regimen better than his consultant. He knows when to take a booster dose and that like Cinderella he has to be home b
Diagnosed in 1992, Alan can’t walk until he has taken his morning medication. He has ballroom dancing lessons once a week which keeps him fit and mobile.
Nerves & brain
>>
Parkinson's disease
>>
Over 12 years
>>
Tom - Interview 06
>>
Tom had forgotten to take his amantadine and was able to demonstrate its immediate effect on his dyskinesia.
Tom was 27 when he was diagnosed. His medication includes levodopa. He experiences ‘on’ and ‘off’ periods most days. During the on period he may also have dyskinesia. He set up the Cure Parkinson’s Trust.
Nerves & brain
>>
Parkinson's disease
>>
Over 12 years
>>
Tom - Interview 06
>>
Tom describes why he feels it is appropriate to self-medicate and why he doesn’t take any pills at night.
Tom was 27 when he was diagnosed. His medication includes levodopa. He experiences ‘on’ and ‘off’ periods most days. During the on period he may also have dyskinesia. He set up the Cure Parkinson’s Trust.
Nerves & brain
>>
Parkinson's disease
>>
2 years or under
>>
Kevin - Interview 16
>>
Kevin finds it embarrassing if he is overcome by sleepiness during a meeting at work. He finds he can keep awake working in the house or gardening.
Kevin was diagnosed 2 years ago. Although he still experiences stiffness, particularly in his shoulder and neck, most of his symptoms were managed well by Ropinirole but it caused nausea and has os now on Rogitotine 4mg vvpatches.
Nerves & brain
>>
Parkinson's disease
>>
Over 12 years
>>
Geraldine - Interview 28
>>
Geraldine finds her eyes tend to close involuntarily. Her friend, however, who also had PD has been known to fall asleep during a meal.
Geraldine was diagnosed in 1990. She was a single parent with three teenage children. She never-the-less succeeded in holding increasingly demanding executive jobs in the voluntary sector and was finally chief executive of the Charities Commission before retiring recently. And she is still working on many projects and committees.
Nerves & brain
>>
Parkinson's disease
>>
5-7 years
>>
Karen - Interview 12
>>
Karen worried about going out alone till she learnt to adjust the timing of her medication to suit her needs.
Karen was 34 when she first started having symptoms down the right side of her body. She experiences a lot of freezing and festination and some dyskinesia.
Nerves & brain
>>
Parkinson's disease
>>
2 years or under
>>
Kevin - Interview 16
>>
Kevin’s symptoms improved so much after 3 months that he began to doubt that he had PD and stopped the medication. 2 years later he needs larger doses
Kevin was diagnosed 2 years ago. Although he still experiences stiffness, particularly in his shoulder and neck, most of his symptoms were managed well by Ropinirole but it caused nausea and has os now on Rogitotine 4mg vvpatches.
Nerves & brain
>>
Parkinson's disease
>>
DBS
>>
Elisabet - Interview 08
>>
Before her Deep Brain Stimulation operation Elisabet often forgot to take her Sinemet but her symptoms soon reminded her.
Elisabet was diagnosed in 1990. In 2006, she had deep brain stimulation which was successful and has improved her symptoms considerably.
Nerves & brain
>>
Parkinson's disease
>>
5-7 years
>>
Brian - Interview 35
>>
Brian was put on pergolide by a GP who was not aware that he had had rheumatic fever as a child.
Diagnosed 14 years ago Brian was on Madopar for 3 years, When Pergolide was added it affected his heart which had been damaged in childhood from Rheumatic fever. He is now on Apomorphine, delivered by a pump into his abdominal wall.
Nerves & brain
>>
Parkinson's disease
>>
DBS
>>
Joe - Interview 32
>>
Joe experienced a kind of compulsive behaviour which seemed to him excellent till he was warned off it.
Joe developed Parkinson’s disease while in his 40’s. Deep Brain Stimulation when he was 60 produced a dramatic improvement in his symptoms.
Nerves & brain
>>
Parkinson's disease
>>
3-4 years
>>
Philip - Interview 36
>>
Philip can predict when he will need to sleep after each dose of pramipexole and can arrange his life to fit in with this.
Since Philip was diagnosed with Parkinson’s disease 4 years ago he has always felt uncertain which of his symptoms were caused by this and which were due to the pain he gets from a severely arthritic hip.
Nerves & brain
>>
Parkinson's disease
>>
5-7 years
>>
Fiona and John - Interview 09
>>
Fiona’s husband could not tolerate the nausea when he was on ropinirole.
Fiona’s husband was diagnosed in 2003 at the age of 42 with early onset Parkinson’s Disease. He has continued to work full time.
Nerves & brain
>>
Parkinson's disease
>>
3-4 years
>>
Helen - Interview 40
>>
When Helen forgets her tablets she has to allow some time for the belated dose to kick in. The effects wear off sooner than they used to.
Helen was 33 when she was diagnosed with Parkinson’s disease. 6 years later her symptoms were well controlled and she was on Rotigotine patches she began secretly gambling on line. When she admitted this and was taken off the patches she quickly lost the urge to gamble.
Nerves & brain
>>
Parkinson's disease
>>
Over 12 years
>>
Geraldine - Interview 28
>>
Geraldine was on ropinirole for five years. She was aware this was not always the first drug to be chosen.
Geraldine was diagnosed in 1990. She was a single parent with three teenage children. She never-the-less succeeded in holding increasingly demanding executive jobs in the voluntary sector and was finally chief executive of the Charities Commission before retiring recently. And she is still working on many projects and committees.
Nerves & brain
>>
Parkinson's disease
>>
Over 12 years
>>
Geraldine - Interview 28
>>
Geraldine who has had PD for 18 years feels better than she has for years since tolcapone was added to her complicated drug regimens.
Geraldine was diagnosed in 1990. She was a single parent with three teenage children. She never-the-less succeeded in holding increasingly demanding executive jobs in the voluntary sector and was finally chief executive of the Charities Commission before retiring recently. And she is still working on many projects and committees.
Nerves & brain
>>
Parkinson's disease
>>
Over 12 years
>>
Geraldine - Interview 28
>>
Geraldine’s complicated regimen allows her to lead a full and active life after 18 years with Parkinson’s disease.
Geraldine was diagnosed in 1990. She was a single parent with three teenage children. She never-the-less succeeded in holding increasingly demanding executive jobs in the voluntary sector and was finally chief executive of the Charities Commission before retiring recently. And she is still working on many projects and committees.
Nerves & brain
>>
Parkinson's disease
>>
8-12 years
>>
Sharon - Interview 31
>>
Sharon's neurologist explained that she was buying time by starting with the smallest possible doses of medication.
Forced by her Parkinsons symptoms to retire from a career she loved as a teacher Sharon turned things round by becoming a business woman creating the very successful Cake Bake Company.
Nerves & brain
>>
Parkinson's disease
>>
2 years or under
>>
Ann - Interview 19
>>
Ann appreciates the need to keep the dose of pramipexole as low as possible but it has had to be increased over time.
Diagnosed three years ago, Ann has tremor in her right hand. The first year after diagnosis was very difficult, but since taking Mirapexin, she feels more able to cope.
Nerves & brain
>>
Parkinson's disease
>>
5-7 years
>>
Bob - Interview 22
>>
Bob had a psychotic reaction and had to be taken off his medication.
Bob was 51 when he was diagnosed. He has tremor in his right hand and is slower at doing things. He continues to work full time.
Nerves & brain
>>
Parkinson's disease
>>
8-12 years
>>
Sharon - Interview 31
>>
If Sharon forgets to take her medication she soon goes ‘off’.
Forced by her Parkinsons symptoms to retire from a career she loved as a teacher Sharon turned things round by becoming a business woman creating the very successful Cake Bake Company.
Nerves & brain
>>
Parkinson's disease
>>
DBS
>>
Neil - Interview 21
>>
Neil used to keep a record of on and off times to tell the neurologist at his hospital appointment.
Diagnosed 13 years ago, Neil has had GDNF and deep brain stimulation which improved his symptoms. Now he has stiffness, slow walking, and sometimes his speech is affected.
Nerves & brain
>>
Parkinson's disease
>>
3-4 years
>>
Nicolas - Interview 23
>>
Nicolas was slightly surprised that the NHS consultant had a different view on medication to the one he had seen privately.
Diagnosed 4 years ago, Nicolas now takes a low dose of Mirapexin. He works full time. He experiences stiffness, tiredness and difficulties with walking and handwriting.
Nerves & brain
>>
Parkinson's disease
>>
8-12 years
>>
Alun - Interview 24
>>
Alun finds his compulsive symptoms harder to explain than his Parkinson’s but was relieved to find someone who had also experienced this.
Alun was diagnosed nine years ago. Physically, his mobility is most affected now. He has experienced obsessive compulsive disorder from the medication he has taken.
Nerves & brain
>>
Parkinson's disease
>>
5-7 years
>>
David - Interview 43
>>
David develops dystonia if his levodopa levels are too high.
When David was diagnosed with PD he was put on Requip (ropinirole). When he realized that he had a problem with hypersexuality he was changed onto Mirapaxin. He then got disastrously involved in gambling. Now he no longer takes dopamine agonists and no longer experiences any compulsive tendencies.
Nerves & brain
>>
Parkinson's disease
>>
5-7 years
>>
David - Interview 43
>>
He uses pill boxes with alarms on them to be sure to take his medication on time. This way he avoids unwanted fluctuations in his symptoms.
When David was diagnosed with PD he was put on Requip (ropinirole). When he realized that he had a problem with hypersexuality he was changed onto Mirapaxin. He then got disastrously involved in gambling. Now he no longer takes dopamine agonists and no longer experiences any compulsive tendencies.
Nerves & brain
>>
Parkinson's disease
>>
5-7 years
>>
Karen - Interview 12
>>
Karen only realised that she probably had Parkinson’s disease when she looked up her medication on the internet.
Karen was 34 when she first started having symptoms down the right side of her body. She experiences a lot of freezing and festination and some dyskinesia.
Nerves & brain
>>
Parkinson's disease
>>
DBS
>>
Stephen - Interview 44
>>
Stephen reached the point where DBS seemed to be the only option.
Stephen was diagnosed with PD when he was 33. After several years when no medication proved successful this was redefined as Parkinsonism and he was offered the DBS operation, This was carried out in 2005 with very good results.
Nerves & brain
>>
Parkinson's disease
>>
3-4 years
>>
Humphrey - Interview 01
>>
Humphrey's psychotherapist suspected that the depression he had could be related to his other symptoms. He finds that PD medication also helps his dep
Humphrey was able to continue working as a writer, broadcaster and musician after he was diagnosed. Although his Parkinson’s was progressing fairly quickly he maintained a resolutely positive attitude, trying to solve each problem as it presented itself, such as voice recognition software when typing became difficult. He died unexpectedly of a heart attack in 2005.
Nerves & brain
>>
Parkinson's disease
>>
5-7 years
>>
Jean - Interview 33
>>
Jean’s hallucinations were very clearly related to her medication as she discovered after she was admitted to hospital with what doctors initially tho
Jean had noticed jumping in one leg and general difficulty walking for at least two years before she was diagnosed with both Parkinsons Disease and ME, having at fist been told she had nothing wrong with her. To high doses of her medication resulted in her having hallucinations.
Nerves & brain
>>
Parkinson's disease
>>
5-7 years
>>
David - Interview 43
>>
David fears that a drug could so manipulate his identity that he is willing to forego certain improvements in his symptoms rather than risk it happeni
When David was diagnosed with PD he was put on Requip (ropinirole). When he realized that he had a problem with hypersexuality he was changed onto Mirapaxin. He then got disastrously involved in gambling. Now he no longer takes dopamine agonists and no longer experiences any compulsive tendencies.
Nerves & brain
>>
Parkinson's disease
>>
8-12 years
>>
Natalia - Interview 18
>>
Don’t lose heart when you start the medication. It may take time to begin to reach the dose which is right for you.
Diagnosed in 1999, Natalia takes Madopar and Mirapexin but has times during the day when she feels weak, and has difficulty standing and understanding and participating in conversations.
Nerves & brain
>>
Parkinson's disease
>>
8-12 years
>>
Natalia - Interview 18
>>
Natalia experienced 6 weeks of depression when she went on pramipexole (Mirapexin) but eventually felt benefits from it.
Diagnosed in 1999, Natalia takes Madopar and Mirapexin but has times during the day when she feels weak, and has difficulty standing and understanding and participating in conversations.
Nerves & brain
>>
Parkinson's disease
>>
8-12 years
>>
Natalia - Interview 18
>>
Natalia is reluctant to change to a new drug and would like more opportunity to discuss it with her consultant.
Diagnosed in 1999, Natalia takes Madopar and Mirapexin but has times during the day when she feels weak, and has difficulty standing and understanding and participating in conversations.
Nerves & brain
>>
Parkinson's disease
>>
DBS
>>
Stephen - Interview 44
>>
Stephen could reduce the amount of medication he takes.
Stephen was diagnosed with PD when he was 33. After several years when no medication proved successful this was redefined as Parkinsonism and he was offered the DBS operation, This was carried out in 2005 with very good results.
Nerves & brain
>>
Parkinson's disease
>>
5-7 years
>>
David - Interview 43
>>
David explains the thinking behind the therapeutic trial.
When David was diagnosed with PD he was put on Requip (ropinirole). When he realized that he had a problem with hypersexuality he was changed onto Mirapaxin. He then got disastrously involved in gambling. Now he no longer takes dopamine agonists and no longer experiences any compulsive tendencies.
Nerves & brain
>>
Parkinson's disease
>>
Over 12 years
>>
Tom - Interview 06
>>
When Tom was put on levodopa he thought it wonderful because his symptoms went away. He didn’t realise this had confirmed his diagnosis.
Tom was 27 when he was diagnosed. His medication includes levodopa. He experiences ‘on’ and ‘off’ periods most days. During the on period he may also have dyskinesia. He set up the Cure Parkinson’s Trust.
Nerves & brain
>>
Parkinson's disease
>>
3-4 years
>>
Helen - Interview 40
>>
Helen’s tremor was investigated for three years before a trial of levodopa confirmed the diagnosis of PD.
Helen was 33 when she was diagnosed with Parkinson’s disease. 6 years later her symptoms were well controlled and she was on Rotigotine patches she began secretly gambling on line. When she admitted this and was taken off the patches she quickly lost the urge to gamble.
Nerves & brain
>>
Parkinson's disease
>>
5-7 years
>>
Karen - Interview 12
>>
Karen looked for information about the pills she had been given on the internet.
Karen was 34 when she first started having symptoms down the right side of her body. She experiences a lot of freezing and festination and some dyskinesia.
Nerves & brain
>>
Parkinson's disease
>>
Over 12 years
>>
Tom - Interview 06
>>
Tom thought that because some pink tablets relieved his symptoms this meant he was OK. He didn’t realise the test had revealed his diagnosis.
Tom was 27 when he was diagnosed. His medication includes levodopa. He experiences ‘on’ and ‘off’ periods most days. During the on period he may also have dyskinesia. He set up the Cure Parkinson’s Trust.
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