home
a-z of conditions
forums
news
about us
See all conditions
Nerves & brain
Parkinson's disease
Forum
Resources & Information
Subject index
Credits
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
Search the whole site
Search in this condition
Parkinson's disease
Subject index
Clip
Nerves & brain
>>
Parkinson's disease
>>
Over 12 years
>>
Alan - Interview 03
>>
Alan has a chair-lift, a wet-room and has bought himself an automatic chair.
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
>>
2 years or under
>>
Steve - Interview 05
>>
As things get harder for him, Steve is determined to keep his connection with the club where he has been running for years.
Diagnosed in 2004, Steve takes Pramipexole. He has tremor in his right arm. He is a member of a running club and trains most days.
Nerves & brain
>>
Parkinson's disease
>>
DBS
>>
Elisabet - Interview 08
>>
Elisabet continued with lecturing even though she had to explain to the audience why she was shaking.
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
>>
Fiona and John - Interview 09
>>
Fiona’s husband had to have a second MRI scan because the first had been inconclusive.
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
>>
Angela - Interview 10
>>
Angela’s GP had no idea what was wrong with her but agreed to enter her for a ‘nerve trial’. Once at the hospital the cause of her problems was recogn
Angela was diagnosed in 2004 with Parkinson’s Disease. She takes Ropinirole, Orphenadrine and Requip. Acupuncture has helped her symptoms.
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
>>
3-4 years
>>
Peter - Interview 11
>>
Peter and his wife enjoy going to the theatre but have to be careful to book the right seats.
Peter was diagnosed six years ago. He experiences tremor, freezing and rigidity and considerable problems sleeping at night. He takes slow release Sinemet and Amitriptyline.
Nerves & brain
>>
Parkinson's disease
>>
3-4 years
>>
Keith - Interview 14
>>
Tiredness had forced Keith to give up doing some of the things he most enjoyed.
Keith’s symptoms have progressed slowly since he was diagnosed in 2004. His symptoms are tremor in his left hand, slowness and fatique. He is currently taking Madopar.
Nerves & brain
>>
Parkinson's disease
>>
3-4 years
>>
Gaynor - Interview 15
>>
Gaynor admits that going privately is plusher but believes that the approach is changing in NHS clinics with the advent of specialist nurses and other
Gaynor was diagnosed 4 and half years ago. She takes Mirapexin. Fatigue, sleep disturbance and stiffness are the main symptoms she experiences.
Nerves & brain
>>
Parkinson's disease
>>
8-12 years
>>
Natalia - Interview 18
>>
Natalia had not been convinced that it was appropriate to accept advice on medication from anyone other than the neurologist.
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 saw a consultant who dismissed her symptoms and seemed irritated by her suggestion that she had Parkinson’s Disease.
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
>>
2 years or under
>>
Ann - Interview 19
>>
Ann realised that if she adjusted to her body's demands she could go on with gardening and yoga.
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
>>
DBS
>>
Neil - Interview 21
>>
Neil's PD was diagnosed when he was 35. Recently he and his partner have swapped roles and this works well for both of them.
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
>>
Ruth - Interview 26
>>
Ruth was scared by the prospect of having a brain scan though she was told it was just to make sure everything was ok.
Ruth was diagnosed 9 years ago. She has tremor, stiffness, difficulty sleeping and tiredness. She has to pace herself. Some days are easier to cope with than others.
Nerves & brain
>>
Parkinson's disease
>>
Over 12 years
>>
Geraldine - Interview 28
>>
Geraldine is determined not to give in.
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 has successfully mourned the many things she has lost.
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
>>
5-7 years
>>
Rachel - Interview 39
>>
Rachel saw how difficult it may be for a GP who does not know you well to make an accurate assessment of changes which might be very slight.
Rachel was diagnosed 6 years ago when she was 70. She takes Madopar which allows her to function pretty normally. She is not sure whether things take longer to do is because of her age or because of her Parkinsons disease.
Nerves & brain
>>
Parkinson's disease
>>
5-7 years
>>
Rachel - Interview 39
>>
Rachel was given a stair rail and a contraption to help her pull herself up in bed.
Rachel was diagnosed 6 years ago when she was 70. She takes Madopar which allows her to function pretty normally. She is not sure whether things take longer to do is because of her age or because of her Parkinsons disease.
Nerves & brain
>>
Parkinson's disease
>>
8-12 years
>>
Richard - Interview 46
>>
Richard admitted that he had become uncharacteristically promiscuous since taking a dopamine agonist.
No details
Nerves & brain
>>
Parkinson's disease
>>
5-7 years
>>
Jean - Interview 33
>>
Jean’s early symptoms of Parkinson’s disease were confused with what may or may not have been ME.
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
>>
2 years or under
>>
Elaine - Interview 34
>>
Elaine was given a thorough examination the first time she saw the neurologist.
Elaine was diagnosed abut 6 months ago though some of her symptoms had been coming on for several years. Many of the problems she had had have improved since she began on medication.
Nerves & brain
>>
Parkinson's disease
>>
5-7 years
>>
David - Interview 43
>>
David has heard about DaT scans which he believes are not yet available in the UK.
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
>>
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
>>
3-4 years
>>
Helen - Interview 40
>>
Helen, then 33, was furious when her GP said he suspected she was suffering from Parkinson’s disease - though this was not confirmed till several yea
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
>>
2 years or under
>>
Steve - Interview 05
>>
Steve noticed that he had suddenly dropped from being first in the team to being last for no obvious reason.
Diagnosed in 2004, Steve takes Pramipexole. He has tremor in his right arm. He is a member of a running club and trains most days.
Nerves & brain
>>
Parkinson's disease
>>
2 years or under
>>
Kevin - Interview 16
>>
Kevin was totally taken aback when a student doctor, watching him walk round a swimming pool while on holiday, suspected he had Parkinson’s disease.
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
>>
3-4 years
>>
Gaynor - Interview 15
>>
Gaynor tried to get someone to explain the problems she had when brushing her teeth and with her writing.
Gaynor was diagnosed 4 and half years ago. She takes Mirapexin. Fatigue, sleep disturbance and stiffness are the main symptoms she experiences.
Nerves & brain
>>
Parkinson's disease
>>
3-4 years
>>
Helen - Interview 40
>>
Helen says that nothing on earth would persuade her to submit to DBS.
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
>>
Gina - Interview 41
>>
Gina, who knew nothing about Parkinson’s disease at the time of her diagnosis went away confused and terrified.
After Gina was put on Ropinerole she started gambling on the internet and lost large sums of money. There was no indication at that time on the leaflet that came with the medication that gambling might be a problem.
Nerves & brain
>>
Parkinson's disease
>>
2 years or under
>>
Elaine - Interview 34
>>
For Elaine too the diagnosis and also the start of treatment made sense of symptoms for which she had been blaming herself and her circumstances.
Elaine was diagnosed abut 6 months ago though some of her symptoms had been coming on for several years. Many of the problems she had had have improved since she began on medication.
Nerves & brain
>>
Parkinson's disease
>>
5-7 years
>>
Jean - Interview 33
>>
Jean had been told several times that she had nothing wrong with her so her diagnosis came as a kind of vindication.
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
>>
DBS
>>
Stephen - Interview 44
>>
Stephen described his reaction to people with neurological problems before he became one himself.
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
>>
8-12 years
>>
Sharon - Interview 31
>>
Sharon had suspected for some time that she might have a serious neurological disorder and was determined to keep the diagnosis to herself.
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
>>
Nicolas - Interview 23
>>
Nicolas feels that he had been in denial and regrets that he failed to share with his partner the concerns which actually affected both of them.
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
>>
Ruth - Interview 26
>>
Ruth described the brutality of the original delivery of her diagnosis, her immediate reaction, ways in which people have been able to help and how th
Ruth was diagnosed 9 years ago. She has tremor, stiffness, difficulty sleeping and tiredness. She has to pace herself. Some days are easier to cope with than others.
Nerves & brain
>>
Parkinson's disease
>>
2 years or under
>>
Ann - Interview 19
>>
Ann came to adopt a very positive attitude to the diagnosis she had been given.
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
>>
8-12 years
>>
Judie - Interview 20
>>
Judie described the unfeeling attitude of the neurologist she had gone to see privately and suggests some of the things that might have made the consu
Although having Parkinson’s meant that Judie had to give up work, she has found herself doing all sorts of adventurous things she might never have done otherwise.
Nerves & brain
>>
Parkinson's disease
>>
2 years or under
>>
Penny - Interview 17
>>
When Penny was referred on by her GP she was expecting to discover that her symptoms were caused by stress.
Although she was advised not to mention her newly diagnosed Parkinson’s disease when she had to change her job she has found that disclosure was necessary. As a divorced woman she can’t help worrying about who will care for her in future if her condition deteriorates.
Nerves & brain
>>
Parkinson's disease
>>
3-4 years
>>
Keith - Interview 14
>>
Keith had done quite a lot of research before going to the neurologist.
Keith’s symptoms have progressed slowly since he was diagnosed in 2004. His symptoms are tremor in his left hand, slowness and fatique. He is currently taking Madopar.
Nerves & brain
>>
Parkinson's disease
>>
5-7 years
>>
Fiona and John - Interview 09
>>
Fiona realised that it might not have been easy for the consultant having to tell them the diagnosis.
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
>>
Humphrey - Interview 01
>>
Humphrey had looked up the symptoms and decided that he should write about his experiences.
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
>>
Over 12 years
>>
Tom - Interview 06
>>
Tom came out of the neurologist's waiting room to the horrific realisation that in time he would be like the people he had seen there. Before he went
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
>>
DBS
>>
Elisabet - Interview 08
>>
Elisabet was aware that something was wrong but didn’t allow herself to consider that it might be something serious.
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
>>
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
>>
Over 12 years
>>
Alan - Interview 03
>>
Alan is determined to keep going, but admits that sometimes it’s a struggle.
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
>>
Geraldine - Interview 28
>>
Geraldine relies on a GP who has made it his business to become familiar with PD and the Parkinson’s disease nurse.
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
>>
David - Interview 43
>>
David emphasises the value of having easy access to a Parkinson’s disease nurse.
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.
Topic
Nerves & brain
>>
Parkinson's disease
>>
Parkinson’s UK and Parkinson’s disease nurses
>>
Parkinson’s UK and Parkinson’s disease nurses
Parkinson’s UK and Parkinson’s disease nurses
>>
Parkinson's disease
>>
Parkinson’s UK and Parkinson’s disease nurses
>>
Parkinson’s UK and Parkinson’s disease nurses
Parkinson’s UK and Parkinson’s disease nurses
>>
Parkinson's disease
>>
Parkinson’s UK and Parkinson’s disease nurses
>>
Parkinson’s UK and Parkinson’s disease nurses
Parkinson’s UK and Parkinson’s disease nurses
Nerves & brain
>>
Parkinson's disease
>>
5-7 years
>>
Karen - Interview 12
>>
When Karen first joined PDS she thought she was the only person around with early onset PD. PDS helped her to set up a group which now has 40 members.
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
>>
Parkinson’s UK and Parkinson’s disease nurses
>>
Parkinson’s UK and Parkinson’s disease nurses
Parkinson’s UK and Parkinson’s disease nurses
Nerves & brain
>>
Parkinson's disease
>>
3-4 years
>>
Peter - Interview 11
>>
Peter got the PDS to help him put together an information pack for people joining his local branch.
Peter was diagnosed six years ago. He experiences tremor, freezing and rigidity and considerable problems sleeping at night. He takes slow release Sinemet and Amitriptyline.
Nerves & brain
>>
Parkinson's disease
>>
3-4 years
>>
Peter - Interview 11
>>
Having campaigned for a specialist nurse Peter describes his feelings now they have one.
Peter was diagnosed six years ago. He experiences tremor, freezing and rigidity and considerable problems sleeping at night. He takes slow release Sinemet and Amitriptyline.
Nerves & brain
>>
Parkinson's disease
>>
3-4 years
>>
Angela - Interview 10
>>
Angela admires the PDS and questions the value of a proliferation of separate organisations all trying to find a cure for Parkinson’s Disease.
Angela was diagnosed in 2004 with Parkinson’s Disease. She takes Ropinirole, Orphenadrine and Requip. Acupuncture has helped her symptoms.
Nerves & brain
>>
Parkinson's disease
>>
DBS
>>
Joe - Interview 32
>>
Joe had found the PDS very helpful, if a bit unrealistically upbeat, when things were very difficult for him before he had Deep Brain Stimulation.
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
>>
8-12 years
>>
Ruth - Interview 26
>>
Ruth described the brutality of the original delivery of her diagnosis, her immediate reaction, ways in which people have been able to help and how th
Ruth was diagnosed 9 years ago. She has tremor, stiffness, difficulty sleeping and tiredness. She has to pace herself. Some days are easier to cope with than others.
Nerves & brain
>>
Parkinson's disease
>>
5-7 years
>>
Fiona and John - Interview 09
>>
Fiona found the helpline discretely sensitive to her needs and its trained nurses helpful and sympathetic.
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
>>
Keith - Interview 14
>>
Keith’s initial symptoms were put down to thyroid disease and he developed many more before an accurate diagnosis was reached.
Keith’s symptoms have progressed slowly since he was diagnosed in 2004. His symptoms are tremor in his left hand, slowness and fatique. He is currently taking Madopar.
Nerves & brain
>>
Parkinson's disease
>>
8-12 years
>>
Natalia - Interview 18
>>
Natalia had difficulty persuading her GP that her symptoms were not just delayed reaction to the loss of her husband some years before.
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
>>
3-4 years
>>
Humphrey - Interview 01
>>
Humphrey began to realise that his symptoms probably added up to something significant and searched on the internet for an explanation.
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
>>
2 years or under
>>
Steve - Interview 05
>>
Steve ignored several symptoms till his running speed suddenly plummeted. His wife and running colleagues had realised something was wrong before he a
Diagnosed in 2004, Steve takes Pramipexole. He has tremor in his right arm. He is a member of a running club and trains most days.
Nerves & brain
>>
Parkinson's disease
>>
5-7 years
>>
Fiona and John - Interview 09
>>
Fiona’s husband had already mentioned having difficulty controlling his arm when washing his hair. She then noticed one arm didn’t swing when he walke
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
>>
Carers
>>
Anna - Interview 29
>>
Anna had been concerned at Rafa’s apparent lack of responsiveness as well as other symptoms which she had noticed but not been able to explain.
Her partner was diagnosed with PD 18 months ago. So far he doesn’t need medication and they have told very few people about the diagnosis
Nerves & brain
>>
Parkinson's disease
>>
8-12 years
>>
Sharon - Interview 31
>>
Sharon described the symptoms which gradually added up till she knew she had to look for a diagnosis.
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
>>
5-7 years
>>
David - Interview 43
>>
Others had noticed David’s shuffling long before his Parkinson’s disease was diagnosed.
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.
Mail to a friend