• Clip
• 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 >> 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 >> 3-4 years >> Humphrey - Interview 01 >> When he was a child Humphrey knew two people who had clearly recognisable symptoms of Parkinson’s.

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 >> Karen - Interview 12 >> Karen accepts that depression goes with the disease but feels that the only way to come to terms with it is to accept it for what it is.

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 >> 8-12 years >> Ruth - Interview 26 >> Don’t assume the worst, everyone with Parkinson’s disease has different symptoms and progression. What is happening to someone else may not happen to

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 >> 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 >> 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 >> When Ruth’s family started to telephone after her husband told them her diagnosis, she couldn’t cope with their sympathy and wanted to be well.

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 >> 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 >> 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 >> 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 >> 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 >> 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 >> 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 >> 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.

• Topic
• Nerves & brain >> Parkinson's disease >> Getting the diagnosis >> Getting the diagnosis

Getting the diagnosis

• >> Parkinson's disease >> Getting the diagnosis >> Getting the diagnosis

Getting the diagnosis

• Nerves & brain >> Parkinson's disease >> Path to diagnosis >> Path to diagnosis

Path to diagnosis

• >> Parkinson's disease >> Path to diagnosis >> Path to diagnosis

Path to diagnosis

• 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.

• 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 >> 5-7 years >> Wendy - Interview 07 >> Wendy had had symptoms for five years before she saw a neurologist who said she had to wait another year for him to be sure of the diagnosis.

Wendy was diagnosed in 2002. She has problems with balance and memory and a tremor in her right hand. Roprinirole controls her symptoms well.

• 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 >> 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 >> 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 >> 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 >> 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 >> 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.

• Condition
• Nerves & brain >> Parkinson's disease >> Parkinson's disease

Publication date: 15^th December 2008     Last updated: December 2010

Review date: December 2012

 

Many people would tell you that their idea of someone with Parkinson’s disease is of someone bent over, shuffling, with shaking hands with very slow barely audible speech. We interviewed over 40 people with Parkinson’s disease from all over the UK, young and old, some having received their diagnosis as long as twenty years ago others more recently, some in the last couple of years. Some developed the illness at a young age, others in their mid fifties and later. Some were badly affected while others had deteriorated very little since the original diagnosis. But what was striking was that except in a very few cases the medication was working for them most of the time. And when it was working, many of these ‘sufferers’ might not actually be noticed as having any disorder by anyone not familiar with the disease. This is not to say that there is any medication which can cure Parkinson’s disease. Most people were on a cocktail of different drugs, each with their own advantages and disadvantages in order to control their symptoms.

 

People with Parkinson’s are sometimes desperate for others to understand what it is like to be them. We hope that this website will be able to fulfil this wish.

• >> Parkinson's disease >> Parkinson's disease

Publication date: 15^th December 2008     Last updated: December 2010

Review date: December 2012

 

Many people would tell you that their idea of someone with Parkinson’s disease is of someone bent over, shuffling, with shaking hands with very slow barely audible speech. We interviewed over 40 people with Parkinson’s disease from all over the UK, young and old, some having received their diagnosis as long as twenty years ago others more recently, some in the last couple of years. Some developed the illness at a young age, others in their mid fifties and later. Some were badly affected while others had deteriorated very little since the original diagnosis. But what was striking was that except in a very few cases the medication was working for them most of the time. And when it was working, many of these ‘sufferers’ might not actually be noticed as having any disorder by anyone not familiar with the disease. This is not to say that there is any medication which can cure Parkinson’s disease. Most people were on a cocktail of different drugs, each with their own advantages and disadvantages in order to control their symptoms.

 

People with Parkinson’s are sometimes desperate for others to understand what it is like to be them. We hope that this website will be able to fulfil this wish.

• 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 >> 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 >> 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 >> 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 >> 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 >> 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 >> 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 >> 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 >> 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 >> 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 >> 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 >> 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 >> 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 >> 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 >> 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 >> 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 >> 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 >> 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 >> 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 >> 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 >> 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 >> 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 >> 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 >> 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 >> 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 >> 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 >> 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 >> 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 >> 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 >> 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 >> 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 >> 8-12 years >> Ruth - Interview 26 >> Ruth’s depression, panic attacks and paranoia were a reaction to being diagnosed with Parkinson’s disease.

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.