Parkinsons Disease and related Movement Disorders[1]
The above slides will give you a guide to caring for those with these movement disorders. For people looking at these who may be living with a movement disorder or as a relative or carer I have produced them in easy to understand language. It is important that you understand each person with a movement disorder are individual and although they may have a diagnosis the progression and response to treatment is very individual. I have added in these slides to help out new nurses who as part of their role as a PDNS or as a professional with a special interest in Parkinsons you will need to be educating PWP and colleagues. I have added a few slides on MSA PSP CBD and on the dementias. Many nurse working in the field of Parkinsons will also be caring for people with other related movement disorders and should find these slides helpful.
Multiple system atrophy (MSA) is a neurological disorder that affects adult men and women. It is caused by degeneration or atrophy of nerve cells in several areas of the brain. PSP is known as Progressive Supranuclear Palsy (PSP) and is a neurological condition caused by the premature loss of nerve cells in certain parts of the brain. Corticobasal Degeneration (CBD) is a degenerative brain disease affecting people from the age of 40 onwards. Although there are similarities to PSP, with similar nerve cell damage and the build-up of a protein called tau in certain parts of the brain, the classical clinical picture is quite distinct. However people diagnosed with CBD may go on to develop features of PSP and vice versa.
Dementia with Lewy bodies (DLB) is a type of dementia accompanied by changes in behaviour, cognition and movement.[ Memory loss is not always present early. The Dementia steadily worsens over time and the condition is diagnosed when cognitive decline interferes with normal daily functioning. A core feature is REM sleep behaviour disorder (RBD), in which individuals lose normal muscle paralysis during REM sleep, and act out their dreams. RBD may appear years or decades before other symptoms.[ Other frequent symptoms include visual hallucinations; marked fluctuations in attention or alertness; and slowness of movement, trouble walking, or rigidity. The autonomic nervous system is usually affected, resulting in changes in blood pressure, heart and gastrointestinal function, with constipation as a common symptom Mood changes such as depression and apathy are common.
Parkinson’s Disease Dementia is a decline in thinking and reasoning that develops in someone diagnosed with Parkinson’s disease at least a year earlier. Common symptoms include:
- Changes in memory, concentration and judgment
- Trouble interpreting visual information
- Muffled speech
- Visual hallucinations
- Delusions, especially paranoid ideas
- Depression
- Irritability and anxiety
- Sleep disturbances, including excessive daytime drowsiness and rapid eye movement (REM) sleep disorder
Neuropsychological testing
There is no definitive medical test that confirms cognitive decline or dementia in Parkinsons. The most accurate way to measure cognitive decline is through neuropsychological testing. The test involves answering questions and performing tasks which have been carefully designed for this purpose. These tests are carried out neuropsychologists. The tests assesses the individuals moods anxiety level and hallucinations illusions and psychosis which they may be experiencing. Cognitive ability such as memory attention orientation to time and place the use of language and the ability to carry out every day task. Reasoning is assessed along with abstract thinking and problem solving. These tests can take up to 4 hours to complete and gives a more accurate diagnosis of the problems and guides the clinicians to the correct treatments and care planning.
Imaging studies
CT Scans and MRI Scans are of little use in diagnosing dementia in people with Parkinsons . Positron emission tomographic (PET) may help distinguish dementia from depression.
Treatments for Dementia
There are many treatments for cognitive impairment and dementias in Parkinsons which are often different to the general population. For instance haloperidol which can be used in general dementias cannot be used in Parkinsons as it blocks dopamine transmitting. Aricept (Donezepil) Rivastigmine (Exelon) Galantamine (Reminyl) Clozapine (Clozarile ) Quetiepine (Seroquence ) are all suitable for treating Parkinsons dementia and Diffused Lewy Bodies Disease but need to be prescribed and supervised in used by a Parkinsons specialist team and or a GP with an understanding of Parkinsons. These treatments need regular monitoring by a clinician following them being prescribed.
HOW TO WRITE A NURSING PAPER
I am hoping by including this into the nursing topics it will encourage you to think about writing a nursing paper. You don’t have to be an academic but to simply have a passion about a topic that interest you and is off benefit to your colleagues and to those they are caring for . All stories have a beginning a middle and an end. When i am reading and researching papers that interest me I tend to head to the title and the conclusion before I am tempted to read the whole paper. As a nurse I love reading papers written by nurses especially on nursing care topics. We as nurses need to understand a patient care perspective and where nursing care standards may be poor in a certain area we can improve this through writing papers and sharing best practice world wide.
These slides will guide you and maybe encourage you to get going. As a nurse specialist I get much of my inspiration from the People with Parkinsons and those they are living with including their children. Nurses on the wards and in the community who struggle to manage the complexity of Parkinsons and other specialist nurses in other fields who have to manage the PWP who have co-morbidities.
KCH Model of care was a paper written and developed by Jane Mills PDNS and myself describing the model of care at KCH London. When I started out as a new nurse in post there was basically nothing out there for me to turn to in order to set up a nursing service. I struggled on for 3 years and learnt through clinics and attending patient groups what the person with Parkinsons and their families felt worked for them as far as clinics were concerned. So many People living with Parkinsons would report back that their clinics were a waste of time as they rarely understood what they were being taught as well as knowing very little about their Parkinsons. They were unable to make informed decisions about their care or left feeling more confused then when they went in .
From this feed back and through TheCureParkinsons Trust 131105 QoL Postcard for Field Test A4 full only_DRAFT was developed. This tool enables the PWP and their partners to decide their most dominant 3 symptoms that affect them most days and bring them into the clinician and chair their clinics. Clinicians cant mind read PWP symptoms even being a specialist in the field so I advice PWP to prepare for their clinics by using this tool or the NMS tool in clinics benefiting both the PWP and the clinicians.
When setting up a nurse lead clinic I suggest trying to use a spacious room as PWP struggle and feel uncomfortable in small spaces. Don’t clock watch if possible and keep the clock behind you. PWP are more relaxed and open when they feel they have time to talk and the clinician are listening rather than clock watching. Use tools to collect information as all your outcomes should be researched and able to be audited. Keeping a data base is advisable. Build a team of MDT specialist around you as a nurse as working independently is no use to you or the PWP. The role of the PDNS is often described as being the lynch pin to the service with the PWP and their partners being the nucleus of the circle.
If you use DAT Scans and MRI Scans in your service its best for you to explain the results of these along with the PWP which includes them in their pathway of care from diagnosis. It develops the role of the PWP being the expert from the start. Using the NMSQ or any other QOL tool along with the PWP develops useful conversation with auditable outcomes. Far more productive than just how are you or you are looking well.
Non motor symptoms are very well recognised in Parkinsons and the non-motor symptom tool developed by the Kings College team lead by Prof Ray Chaudhuri is used all over the world and is now available in many languages. The tool assesses 30 non-motor symptoms of Parkinsons vary from the diagnostic stages throughout the pathway to the more advanced end stages of the condition. The symptoms also vary as per person living with Parkinsons. At diagnosis these symptoms can clarify what type of Parkinsons the PWP is living with and can guide the clinicians on how to treat the individuals Parkinsons. For instance a person with a day time sleepy dominant Parkinsons Parkinsons may not do well on agonists treatments as these may worsen the symptoms and others presenting with hallucinations and possible memory issues could experience the same issues.
Here we are talking about Parkinsons and sleep problems experienced at some point by most people diagnosed with Parkinsons. These symptoms can often be traced back to 5-15 years prior to diagnosis of Parkinsons . Young people often arrive in clinics with many years of having slept badly. either being able to go asleep but wake up within a few hours unable to go back to sleep or sleep for just 5 hours a night and then finding them selves sleeping at work or even driving sleepy. Excessive day time sleepiness can develop as a consequence of sleeping badly at night or through dehydration from poor fluid intake or side effects from Parkinsons medications. Sleep status can be assessed using the Parkinsons sleep scale. To understand that sleep issues can be a part of the Parkinsons it is essential to understand the nms_questionnaire . Professionals and People living with Parkinsons would benefit from using this tool prior to attending their clinic review or when holding clinics.
146_pd_sleep_scale
Sleep issues are treatable sometimes by changing the way the PWP lives. Reviewing their alcohol intake, their fluid intake generally (which is usually poor) when they take their medications for example taking L-dopa such as sinemet and madopar with fluids before meals, avoiding stimulants prior to bed time including use of phones television and computers. Ensuring the bedroom is uncluttered and restful, not too hot or cold, and avoiding large meals before going to bed. Some hospitals run sleep assessment clinics which a PWP can be referred to for a full sleep assessment /
As a PDNS my skills are often learnt from clinics from the PWP and their families. Books have a limitation as Parkinsons symptoms are visual in most cases unlike many other neurological conditions. The resting tremor slowness of movement or as with the younger PWP Dystonia. I have had the privilege of attending many conferences while working as a PDNS and teaching in many countries at other times. I come from a Maltese Scottish background and have spent much of my life in Malta. Recently I was invited to teach at the MPDA meetings in Malta. To an amazing reception on each occasion. Teaching Parkinsons in a completely different culture was challenging but in reality the symptoms of the condition are the same world wide and what is missing world wide is education and empowerment from diagnosis.
Living with a long term condition usually means no cure at this time and developing a good QOL and learning to live with the condition. In Malta there is so much want to learn so much enthusiasm to understand what they are living with. A 1 hour session soon develops into 3 hours. There are limited resources limited treatments and no Patient empowerment. The idea of a PWP chairing their clinics is many years away. Even the acceptance of the role of the PDNS is unacceptable in a culture where nursing is seen as a carer and not an educator. PWP don’t need nursing but educating and empowering . They need the encouragement to become independent and to be able to make informed decisions about their but this cant be done unless diagnosis includes the person with Parkinsons and their families. The educating in the UK is mostly lead by the nurses but in Malta where there are no nurses working in this field many PWP are left on their own with their families left in the dark.
