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• Nerves & brain >> Parkinson's disease >> DBS >> Stephen - Interview 44 >> Stephen was amazed when the effects of stimulation became apparent during the operation.

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 >> DBS >> Khadim - Interview 38 >> Khadim remembers the surgeons adjusting the position of the electrodes during the operation.

Khadim’s Parkinsons disease was diagnosed in 2002. Although he was tried on many different treatments none of them helped. In January 2008 he was given Deep Brain Stimulation. This has been very successful.

• Topic
• >> Parkinson's disease >> Embarrassing symptoms >> Embarrassing symptoms

Embarrassing symptoms

• Nerves & brain >> Parkinson's disease >> Embarrassing symptoms >> Embarrassing symptoms

Embarrassing symptoms

• 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 >> 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 >> 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 >> 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 >> 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.

• 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 >> 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 >> 8-12 years >> Sharon - Interview 31 >> Sharon has leant that she can speak better ‘on a laugh or a sing’. She sometimes worries that her voice problem is not caused by PD.

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 >> Joe - Interview 32 >> Joe’s speech problem has changed since DBS. His speech therapist encourages him to make an effort to speak louder which he can if he is angry.

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 >> 5-7 years >> Brian - Interview 35 >> Brian accepts the logic of voice training but finds it hard to keep thinking about it when he talks.

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 >> 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.

• >> Parkinson's disease >> Embarrassing symptoms >> Embarrassing symptoms

Embarrassing symptoms

• Nerves & brain >> Parkinson's disease >> Carers >> Isabelle - Interview 42 >> Isabelle’s mother’s signature had changed so much the bank would not accept it.

Isabelle’s mother who had had PD for 12 years came to live with her in 2002. It was not always easy to care for her and for her own young children. After an admission to hospital they agreed to move her to a nearby nursing home. This has worked well for all of them.

• Nerves & brain >> Parkinson's disease >> 5-7 years >> David - Interview 43 >> David explained why he enjoys swimming and how he makes sure he is safe when in the water.

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 realises now that one hand had been behaving differently for a long time. He can use his tremor to stir his tea.

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 >> Carers >> Mari - Interview 45 >> Mari saw how frustrating Humphrey found his clumsiness but found it hard to decide how much help to offer.

Mari describes what it’s like seeing and, herself, dealing with the symptoms of her husband’s Parkinson’s Disease.

• 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 >> 5-7 years >> Bob - Interview 22 >> Bob has advice on organising your wallet and some lateral thinking on clothes.

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 >> 2 years or under >> Elaine - Interview 34 >> Elaine has some idea of the neurophysiology of her disorder but it doesn’t help her understand why her arm doesn’t do what she asks it to do.

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 >> Embarrassing symptoms >> Embarrassing symptoms

Embarrassing symptoms

• Nerves & brain >> Parkinson's disease >> Early symptoms >> Early symptoms

Early symptoms of Parkinson's disease

• >> Parkinson's disease >> Early symptoms >> Early symptoms

Early symptoms of Parkinson's disease

• Nerves & brain >> Parkinson's disease >> 3-4 years >> Humphrey - Interview 01 >> Humphrey would have preferred to be able to cut his food with scissors rather than evoke pity from his friends.

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 >> Helen - Interview 40 >> Helen finds it embarrassing to have her husband cut food up for her, so tries to order food that doesn’t cutting.

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 >> Carers >> Mari - Interview 45 >> Mari described the problems for the family who have to live with the Parkinson’s disease ‘mask’.

Mari describes what it’s like seeing and, herself, dealing with the symptoms of her husband’s Parkinson’s Disease.

• Nerves & brain >> Parkinson's disease >> 3-4 years >> Keith - Interview 14 >> Keith’s tremor is constant and interferes with whatever he is doing.

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 >> Fred - Interview 30 >> Episodes of choking embarrass Fred and alarm those around him.

Diagnosed with Parkinsonian syndrome 5 years ago. This condition is only partially responsive to Dopamine and is therefore difficult to treat. In spite of a steady deterioration in his condition Fred remains active and cheerful.

• 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 >> Over 12 years >> Geraldine - Interview 28 >> Geraldine believes that everybody with PD has to take laxatives every day.

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 >> John and Julie - Interview 02 >> John has problems turning over in bed. Julie has to give him some help with dressing.

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 >> 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 >> 8-12 years >> John and Julie - Interview 02 >> John was not convinced that his urgency was just caused by PD. But reaching the toilet in time was. Julie had devised a practical solution to solve th

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 >> 5-7 years >> Brian - Interview 35 >> Brian got stuck in the bath at his sister-in-laws house.

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 >> 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 >> Fred - Interview 30 >> Recently Fred has found his eyes are closed involuntarily most of the time, though if he makes an effort he can open them wide for a little while.

Diagnosed with Parkinsonian syndrome 5 years ago. This condition is only partially responsive to Dopamine and is therefore difficult to treat. In spite of a steady deterioration in his condition Fred remains active and cheerful.

• Nerves & brain >> Parkinson's disease >> 5-7 years >> Rachel - Interview 39 >> Rachel feels she no longer knows how to do things that had once have been second nature.

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.

• 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.