Introduction.
Giving someone bad news is never easy and telling somebody that they have Parkinson’s disease is no exception. The information in this website is designed to support both the person being diagnosed and the health professional giving the diagnosis. What helps people cope better at the moment of diagnosis is information about the condition. If they are given the right information in the right way, they can move from feeling bewildered to a deeper emotional understanding of their condition.
There is also a huge benefit from being able to be able to talk and ask questions. However, delivering bad news is one of the hardest challenges that a doctor faces in their medical practice. When doctors were asked about how they felt when giving bad news, 50.0% admitted they experienced a high or very high level of stress while doing so. They feel anxious about depriving their patients of hope and fear that they were letting their patients down. Just over a third of clinicians were worried about coping with the emotional response from the patient.
This website has 3 leaflets which the medical practitioner is able to look at with the patient during diagnosis. There are also longer articles about living with Parkinson's that you can look at later on.
NICE Guidelines (2008) suggest that because many people are in shock during diagnosis and information is difficult to process, there should be a balance of both spoken and written communication. which should leave people with feelings of optimism.
Included in this website is the information that I wish I had been told when I was diagnosed.
"I would just echo other comments in that I think the leaflets are really well written in that they’re pitched at the right level - they are informative and don’t underplay the seriousness of the diagnosis but also emphasise that it’s not all doom and gloom. I think that they also ask/answer a lot of questions that a newly diagnosed person wouldn’t think of asking.....if you see what I mean. I think it would also stop you diving straight into consultation with Dr. Google without a basic understanding of what’s happening to you.
Reading them has actually helped me - I was diagnosed 18 months ago and am still coming to terms with it and it was nice to see someone say that that’s ok."
Cheers
Steve
Leaflet 1
Being told that“It looks like you’ve got Parkinson’s, can leave you feeling in shock. You know you should be asking some questions, but you don’t know what to ask...
What do you need to know right now about Parkinson’s Disease?
Will I die from it? No, you will not die from Parkinson’s Disease and unless there is a cure in the next few years, the reality is that you will die with it
Do new symptoms develop overnight? No. Parkinson’s is a slowmoving condition and symptoms change and develop over weeks, months and years. When you’re first diagnosed, it is tempting to put everything down to Parkinson’s and worry about every twinge that you feel. But you gradually get to know your Parkinson's and how it progresses for you
Does the medication work? There is a range of extremely effective medication available. Your consultant will talk about options with you. You generally start on one type of medication and add in more as new symptoms develop. For most people, Parkinson’s is very well controlled by medication for the first 10-12 years, then there is the option of surgical interventions such as DBS
What can I do to begin to feel more in control? Finding out about Parkinson’s helps you feel more in control. Initially, it can feel as if Parkinson’s completely dominates your thinking and there is no room for anything else. Shrinking Parkinson’s down to a more manageable size is important, and you can do this by finding out about the disease.
Does anything make the symptoms worse? Symptoms are made worse by stress and worry... so it’s important to have some kind of support network around you and ensure that you are looking after yourself
Should I tell anyone? Telling people can ease symptoms. having a support network can make the difference between coping and not coping.
Is there anything I can do to slow down the progression of the disease? Exercise can significantly slow the progression of the disease. There’s loads of information about this online.
Why me? No one yet knows what causes Parkinson’s disease. There’s nothing you could have done to prevent getting it.
It’s likely that how you are feeling now is about as bad as you will ever feel about Parkinson’s Disease
Timeline and symptoms
It’s important to remember that Parkinson’s is a slow moving disease. Symptoms don’t appear suddenly but emerge slowly over time. At the beginning, it’s tempting to put everything down to Parkinson’s
There are 5 stages to Parkinson’s
1 Mild symptoms usually affect only
one side of the body. (This stage can last for around 5 years)
2 Symptoms can affect both sides of the body. How you stand and how you walk can be affected and you can be- come lopsided
(Up to Stage 2.5 can take another 5 years)
3 Body movements can become slow, and balance can be impaired. (Stage 3 be- gins around 10-12 years after diagnosis. Medication works well up to about this point...Then it might be worth looking at other options such as Deep Brain Stimulation
4 Symptoms become more severe: muscles become more rigid, any movement can be difficult and painful. There might be a need for care and support
5 At this stage, there will be a need for
more constant care. (It can take around 20-25years to reach Stage 5)
Not everybody goes through all of these stages. For example, many people have DBS...with the aim of putting off entering stage 4/5
One study showed that Good Progress at 10 years after diagnosis is measured by the fact that you’re still alive, you haven’t got dementia and you don’t fall over.
So what exactly causes all of this?
Deep down in your brain, there's an area called the substantia nigra. Some of its cells make dopamine, a chemical that carries messages around your brain. When you need to scratch an itch or kick a ball, dopamine quickly carries a message to the nerve cell that controls that movement. When that system is working well, your body moves smoothly and evenly. But when you have Parkinson's, the cells of your substantia nigra start to die. There's no replacing them, so your dopamine levels drop and you can't fire off as many messages to control your body.
Early on, you won't notice anything different. But as more and more cells die, you reach a tipping point where you start to have symptoms.
Four motor symptoms are present in PD: tremor, slowness of movement stiffness and postural instability
The most common early sign is a coarse slow tremor of the hand at rest which disappears during voluntary movement of the affected arm and in the deeper stages of sleep. It typically appears in only one hand in the early stages of the disease.
In the later stages, Parkinson’s can also affect our understanding, mood, behaviour, and thought processes.
No one knows what causes Parkinson’s Disease. Scientists currently believe that in the majority of cases, genetic and environmental factors interact to cause Parkinson's disease. Unfortunately, however, it is generally impossible to understand what specifically caused an individual's Parkinson's disease.
Will I still be able to do normal things?
Parkinson’s is a progressive disease, which means it won’t impact your daily life immediately. Many people continue to have a very good quality of life for years after a Parkinson’s diagnosis, and if you can adapt and manage new symptoms when they emerge, it’s likely that you’ll be able to enjoy a good quality of life for longer than you think.
Keep taking the pills...
Several medications are available for the management of both motor and non-motor symptoms of Parkinson's disease.
Medication treatments are tailored to each person's unique symptoms so there is no "one- size-fits-all" approach. Most often, people start medication when their symptoms become very irritating. You will have to weigh up the potential benefits of the medication with the side effects. There is a range of different medications available that are very good at managing symptoms for the first 10-12 years. Getting medication right is one of the key element in enabling people with Parkinson’s to have a good quality of life
What should I do next?
Make an appointment to see your consultant and find out who your Parkinson’s nurse is.
Find out whether you have a for- mal diagnosis
Decide who you are going to tell and how you are going to do it.
Watch Living with Parkinson's - A
Survivor’s Guide. by Professor
Simon Lewis.
Leaflet 2
It’s different for
everybody...But we also have a lot in common...
Parkinson’s is a strange disease in that the symptoms that first appear are usually small and might almost go unnoticed...a small tremor, loss of sense of smell, muscle cramps, feeling a bit stiff. But the impact of the diagnosis is huge. Suddenly, it feels as if your future has been wiped out. All the certainties that you were holding on to disappear. It feels like you are living with a timer counting down your future. Any dreams you had vanish. Instead, you think your life will just fizzle out in a wheelchair somewhere. All the different feelings and emotions you go through can be overwhelming. Getting used to a diagnosis of Parkinson’s takes months or years of emo- tional turmoil. Initially, you find it hard to have space for thinking about anything else. You feel full to the brim just coping with Parkinson’s. Emotionally, you haven’t got room for anything else. You question every twinge or ache. You want to know about the disease and what will happen to you, but you dread finding out what you will become. Do you tell people or keep it secret? You feel isolated and you feel less of a person. You get told that you’re brave, but you don’t feel it. You’re just scared of eventually being unable to get out of your chair and you’re motivated by this fear as much as anything else. You don’t feel brave. Most often you feel tired. You sometimes dream that your Parkinson’s has disappeared, but then the familiar tremors wake you up and you get up earlier than you wanted to.
What will happen next?
You want to be looked after and be told that everything will be alright. But you also know that no one is going to come and rescue you. You gradually begin to understand your Parkinson's and how it progresses in your body and mind. Sometimes it even feels as if some things that you do seem to lessen the symptoms. Medication can help, but you have to get through the side effects and the knowledge that there is only a certain amount you can take before the side effects start to cause problems of their own.
You feel grateful that Parkinson’s isn’t aggressive. You know you won’t die from it. but the development of new symptoms reminds you that it’s not going to go away. Coping with it can be exhausting and each of us needs to find a way to understand and work out how we manage our Parkinson’s
What should I do? Getting the right kind of support
Your whole world has just been turned upside down by the news that you have Parkinson’s Disease. Going through this experience by yourself will be exhausting and will leave you feeling isolated. Talking to somebody can be the first step towards regaining a sense of perspective about being diagnosed. Is there someone who you trust and who has your best interest at heart? You don’t need to be told that everything will be alright: but the right type of emotional support will help you on your journey towards understanding and managing your Parkinson’s.
The type of support you need is similar to that given by a parent when their child is upset. When a young child is distressed, the parent acts as a kind of container for the child’s emotions. The parent is able to take the feelings of distress into themselves and then reflect them back in a way that enables the child to make sense of what they are feeling. This is the kind of person you need...someone who can be an emotional container for you. Someone who can hold your emotions and reflect them back to you in a way that helps you to make sense of what is going on.
If you are able to have this kind of support, it will help you to be able to deal with distress yourself and also to develop the capacity to tolerate un- certainty and not knowing. With a long term condition like Parkinson’s, a great deal of time and effort is taken up with uncertainty and not knowing about how you will be in the future. This can be emotionally wearing and the right kind of support, where you aren’t given simplistic answers or told that everything will be OK, will help to develop your capacity to stay at the edge between knowing and not-knowing. Not knowing leaves a space for a new insight and understanding.
I don’t want to find out the facts about Parkinson’s because I’m frightened about finding out what I might become...
Initially, a diagnosis of Parkinson’s Disease can feel like a huge overwhelming, uncontrollable presence in your life. At that moment, you are not sure what it is that you need to know. This can lead to uncertainty fear and anxiety and a sense of not being in control. and it is easy to become fearful of Parkinson’s. Our understanding of what we can do ourselves to feel better about Parkinson’s is linked to our perception of it as a danger and a threat. The more we see Parkinson’s as a threat, the worse we feel about it and the less we feel we are able to do anything about it. The most effective way of shrinking the feeling of Parkinson’s down from being a huge and overwhelming presence in your life to something which feels manageable is through knowledge. The right knowledge at the right time can change this your perception of how big a threat Parkinson’s is for you and can empower you to make choices. But just looking up Parkinson’s Disease on a search engine can be frightening and overwhelming.
...and there is some good news....
There is a lot that you can do to help yourself. There are two main types of choices you can make:
Doing more of the things that are good for you and Doing less of the things that are bad for you
Also... There is a widespread consensus on the benefits of a good diet, exercise, spending time with friends and family, stimulating your brain, hobbies, and interests.
Leaflet 3
My Dream
Not long after I was diagnosed, I had a dream where I was swimming in a deep sea. The water was choppy and it was hard work to keep going and not give up. The waves would hit me in the face and make it diffi- cult to see where I was going. I wasn't able to swim fast or confi- dently and just used a basic stroke. All around me were small islands. They looked like eggs poking out of the water and they were just made of plain sand. Whenever I got too exhausted, I was able to climb out of the sea and rest on one of the islands. However, I couldn't stay on the island permanently and had to get back into the water to carry on my journey. I came to understand the swimming in the sea is my life with Parkinson’s and that the islands were the places where I could rest and restore myself. I came to realise that the islands were featureless because they could be anything I needed or wanted them to be...friends, family, hobbies, interests or places. Some were big and some small. Some of them I visited a lot, and others not at all.
It's hard work living with Parkinson's. the emotional side is as hard as the physical side. Knowing what your islands are and visiting them regularly for rest and recuperation or just to draw breath can really help in ensuring that you have the strength to carry on. It does take an effort to maintain relationships and hobbies or interests. It can be easy to withdraw from other people. The danger with this is that you can feel as if you are fading away and you can start to become isolated. Developing daily or weekly routines can be very helpful in this regard. Join a group that meets regularly. Go for a walk with a friend once a week. Become a volunteer. Take up a new hobby in your local area... Whatever your islands are, make sure that you give yourself time and permission to enjoy them...
Coping with Parkinson's is hard work and however tempting it might be, sitting in a chair all day from now on is not the best way of managing.
Developing regimes and understanding your relationship with your Parkinson's
(Work out where you need to put the most effort in order to maintain a good quality of life.)
1. Managing the illness (Developing regimes: medication, exercise, hobbies, relationships)
2. Coming to terms with the illness (Biographical: What is your relationship with Parkinson's? How does it change you?)
3 Everyday life ( Getting to know your limits)
The trauma of being diagnosed with Parkinson's
For many people being diagnosed is traumatic. Around 50% of patients describe being diagnosed as being a very negative experience. Patient’s describe the ‘bareness’ of the diagnostic encounter, where there seems to be little empathy or shared impact from the clinician. A common experience is that patients experience a sense of abandonment. Often the health professionals just tell them, “You’ve got Parkinson’s” and there is no time given for discussion or questions.. There are,”considerable shortcomings in the manner in which the diagnosis encounter was handled, not least the degree to which, in many instances, it was treated as a matter of routine and passed over as a ‘non-event’ by some diagnosing
clinicians.” (Jane Peek, ‘A Footprint in Every Room”). A recent online survey revealed around 75% of people described their diagnosis of Parkinson’s as very poor, poor or average. Some of the comments included,
“ I was told I had Parkinson's definitely and possibly something more serious I was given no information or support. I was on my own and sobbed all the way home how I didn't crash the car I have no idea. Why is it so awful?”
“ We left thinking my husband was going to die and we knew nothing about the disease.”
“My Neurologist was a bit matter of fact, think she felt a little awkward. Then she passed me on to next door to see her Secretary for some leaflets.”
Nearly three-quarters of people questioned thought that the way that Parkinson's was diagnosed had an impact on how well they coped with the disease. Most people felt that the diagnosis experience should be improved, especially for the clinicians There was a lack of empathy from the health professionals during diagnosis, but this could be attributed to how difficult it can be giving bad news for the health professionals.
You experience trauma when you are in a situation that overwhelms you. When this happens, you feel in shock and you’re not able to take in and make sense of what you are being told. You can only take in fragments of feelings and you’re not able to put these fragments together in a way that enables you to make sense of what is happening. Your brain is also preparing your body for fight or flight response by increasing your heart rate, respiration, blood oxygen levels, and blood flow to muscles. This can lead you to
Perceive danger even in a non- threatening situation
Have difficulty regulating your emotions
Find it difficult to think clearly because the logical part of the brain is often “switched off”
Have problems with short term memory.
Feel anxious and on edge
The moment when I was told, ‘It looks like you’ve got Parkinson’s” was the first time that I really experienced what trauma felt like. I felt that I was in the grip of something more powerful than me and that I was drowning in a huge wave of fear, confusion, and turmoil. I lost my ability to cope and I remember feeling powerless and not in control of anything
When you’re first diagnosed with Parkinson’s, there are two things that you need to deal with.
1. the feelings that arise from just having been diagnosed, which might be feelings linked with trauma
2. trying to take in what Parkinson's Disease is..and understand how it will affect you.
Alongside all of this, an American psychologist, Howard Leventhal developed the Common Sense Model to understand people’s responses to illness. He argued that when someone is diagnosed with a condition such as Parkinson’s, two processes occur in the brain simultaneously.
1. The process to try to identify the health threat and what you can objectively do about it
2. .The person's regulation of ‘emotional control' (‘How do I feel about it ,what can I do to make myself feel better about it?’).
So you’re trying to work out the threat posed by Parkinson’s, as well as the threat generated by the fight/flight response to the trauma. This can result in Parkinson’s becoming viewed as a bigger threat than it is. It can very easily be seen to be a huge insurmountable problem, over which you have little control,
How to tolerate uncertainty and not knowing.
A huge part of managing Parkinson’s is our ability to tolerate uncertainty and not knowing. This can be the most wearing aspect of the disease. It’s the wondering how you will be in one, two or three years. Will the medication continue to work? Will you still be able to do all the things which give you a good quality of life now? This ‘not knowing’ aspect of Parkinson’s is remorseless and it can be very hard not to get dragged down by negative thoughts. To be able to be in a place where we can manage this, and even for this to be a place of growth, we need to have the support of other people who can ‘hold’, or contain the feelings and emotions that arise at these times of uncertainty. The idea is that another person or group acts as a ‘mental container’ for these feelings and can hold, or contain what we are feeling and reflect this back in a way that we can manage and of which we can make sense. When this is working well, we can make links between something within ourselves (something innate) and something external to ourselves
Wilfred Bion, an influential British psychoanalyst, developed a Theory of Thinking, where he tried to understand how thoughts actually come about. He believed growth of the mind comes through exposure to what is happening around us...what is happening in-the-moment but that we need help to stay in this place because it is about not knowing and uncertainty. Our capacity to stay at the edge between knowing and not-knowing depends on how the effectiveness of the container/contained relationship with another individual or group. If the container/contained relationship is right, and we can deal adequately with our fear of this emptiness-, and even have space empty for new insight.
In other words, when we are just finding it too difficult to cope with having Parkinson’s, we need someone we can talk to who understands. Who won’t give us trite answers, but will be able to help us to develop new understanding between ourselves and our Parkinson’s, or will just help us to be with our Parkinson’s because there isn’t always an answer
How do you change from being Powerless to being in control?
Our perception of what we can do ourselves to feel better about Parkinson’s and more in control of the disease is linked to how much of a danger and a threat we see it. The more we see Parkinson’s as a threat, the worse we feel about it and the less we feel we can do anything about it.
Howard Leventhal’s Common Sense Model suggest that We can reduce our perception of the threat of Parkinson’s through building up knowledge of 5 key aspects of what we are having to deal with
- Identity: the label or name given to the condition and the symptoms that ‘appear’ to go with it. It can be argued that people like to have a label for their symptoms (for legitimisation) a feeling of relief that it is Parkinson's and not something worse
- Cause: the individualistic ideas about the perceived cause of the condition,
- Timeline: understanding how the disease progresses over time
- Consequences: making sense of how Parkinson’s will impact on you
- Curability/controllability: understand the different types of medication and the degree to which you can play a part in controlling or managing your symptoms..
These are the aspects of Parkinson’s which you think about and become familiar with over time. No one else can tell you how to feel or how to be, or how to cope, or what keeps you getting through each day. It's important that you get to know your Parkinson’s and make sense of it for yourself; that you get to know and cope with your Parkinson’s in your own way. There is no rule book, no right or wrong way, but as you work out your relationship with your Parkinson’s, you can use this knowledge and understanding to help you with these choices:
1. You can choose to do more of the stuff that keeps you fit and healthy e.g. exercise
2. You can choose to do less of the things that stop you from being fit and healthy e.g. poor diet
Living with Parkinson’s: Self-management and self-efficacy
You've been diagnosed with Parkinson’s Disease. Your world has fallen apart and you’re determined to put it back together and live as positively as you can. You’ve got yourself informed, you've seen your consultant. You're feeling better than you did when you were first diagnosed and you feel that you can do this.
...all you've got to do is get through each day.
So how do you manage each day?
Just after being diagnosed with Parkinson’s disease at the age of 49, I had a dream that I was swimming in the sea, and all around me were little sandy islands, like eggs poking out of the water. Whenever I was tired, or in need of rest and recovery, I could climb out of the water onto one of these islands. I saw them as representing the places where I could rest and recharge my batteries....friends, family, holidays, hobbies, etc. I found this dream very useful and it has shown me how important it is to have different ‘islands’ in your life.
I have found it really helpful concerning managing Parkinson’s to be involved with friends and family activities, to plan holidays and days out. I have also enjoyed having adventures planned. For a short while, we owned an old VW camper van. The amount of effort it took to drive it meant that you had no space to worry about Parkinson’s disease.....so it was great to have that as an island for a while.
Alex Reed who set up the European Parkinson's Therapy Centre in Boario Terme in Italy wrote how he wished when he was first diagnosed, he was told that:
“You can reduce symptoms by up to 40%, you can help slow progression and your life will become more precious, not less if you make the right choices”.
He goes on to state that,
“The number one thing that destroyed a person with Parkinson’s was apathy. We can deal with Parkinson’s if we can be bothered to or at least know that you can.”
He talks about apathy and depression being so destructive and argues that,
“if we stop caring, we stop exercising and we stop living. We are then just left with the Medicines.... we should focus on maximising our lives every day.”
I got an email from Parkinson’s Uk about a Self Management Course, which I signed up for. This was when I first realised that how I had been trying to cope with Parkinson’s had a name! I was very keen to meet other people who were similarly managing the disease. People who were trying to be positive and keep on top of the disease, and maintain a good quality of life for themselves and the people around them.
Self-management has been around for about 40 years and the thinking behind it is that patients do better if they are active participants in their own treatment. I didn’t know that there was something called Self Management, or what it meant to be active in looking after myself: I was just trying to survive.
There are several models of self-management around. The NHS has developed a long term strategy, which they call personalised care. This means that ”people have choice and control over the way their care is planned and delivered, based on ‘what matters’ to them and their individual strengths, needs, and preferences.” (Universal Personal Care.NHS 2019) A key aspect of this is that self-management must be based people’s own needs...not the needs of the health providers. “Self-management is not a top-down system based on what the health professionals think is right for us. It is a shift (which) represents a new relationship between people, professionals, and the health and care system. It provides a positive change in power and decision making that enables people to feel informed, have a voice, be heard and be connected to each other and their communities.’ (Universal Personal Care.NHS 2019)
For this to work, you need people who are happy having this type of relationship with health professionals. Our belief in our own ability to succeed affects how we think, how we act, and how we feel about ourselves. It also impacts what goals we choose to pursue, how we go about accomplishing those goals, and how we reflect upon our own performance. This belief is known as self-efficacy and was originally developed by Albert Bandura. He defines self-efficacy as “an individual's belief in their innate ability to achieve goals or personal judgment of how well one can execute courses of action required to deal with prospective situations” (Wikipedia 2019)
People with high self-efficacy see difficult tasks as “challenges to be mastered rather than threats to be avoided.” High self-efficacy means that people have a strong commitment to difficult tasks and will keep going, even if it is difficult, or they have a setback. People with low self-efficacy give up quickly and lose faith in their abilities, or don’t even attempt difficult tasks, which they view as personal threats
Self-efficacy can play an important role in health psychology and how people manage their health, nutrition, and illness. For example, having a strong sense of self-efficacy can help people who are trying to quit smoking stick to their goals, maintain a weight loss plan, manage chronic pain, give up alcohol or stick to an exercise schedule.
However, a person with low self-efficacy can believe they are unable to complete any tasks and suffer from a pervasive feeling of apathy and a belief that effort makes no difference and does not lead to success. People with low self-efficacy tend to see the problem is caused by themselves and to see the problem as lasting or permanent. People with higher self-efficacy, don’t allow themselves to become overwhelmed by the size of the problem. They see the problem as temporary or time-limited
In terms of self-management of long term health conditions. higher self-efficacy will increasingly play a bigger part in how people look after themselves, For example, the NHS, in their document, “Universal Personalised Care”, says that we have choice and control over our care based on what matters to us. Not everyone will want this or be able to have the kind of relationship with health professionals required. So, we need an approach that develops high self-efficacy when people are facing difficult or challenging tasks.
Two twins had the same long term health condition. One of the twins did what the doctors told him and was seen as a model patient and someone who managed his illness well. The other twin didn’t do what he was told, did worse on a day to day basis, and wasn’t seen as a good patient by the doctors. A new doctor came to the practice and was intrigued by the twins and went to visit the one who wasn’t seen as doing so well. She asked him what the problem was and was told that he had a son with severe behaviour problems at school and that he wasn’t able to look after himself because he didn’t have the time or energy left after dealing his son. What became clear to the doctor was that sometimes the problems that need sorting out initially may have nothing to do with the illness itself.
The most effective way of developing a resilient sense of efficacy is by having a direct experience of persevering, and overcoming setbacks, and getting through tough times. So people need to given the opportunity to choose what they should do, but they should only choose the activity if they can score above 7/10 that they are likely to do it. If they score themselves lower than that, it's unlikely that they will do it. They should also only set it as a target if they can complete it within a day or two. What you don’t want to do is to set yourself a target of something that you don’t really want to do, several months or weeks ahead... as it is likely that it won’t be completed!
if we can overcome setbacks through direct experience, our problem-solving skills are enhanced, our self-efficacy improves and we will be more able to be in a partnership with the health professionals looking after us and we will have more of a voice, which Parkinson’s needs.
"Better a roller coaster than a roundabout.."
Written in 1987 by American author and social activist Emily Perl Kingsley The following piece was written for new parents of children born with a disability. The piece is given by many organisations to new parents of children with special needs issues such as Down syndrome. Including it here, will hopefully give people who have been diagnosed with Parkinson’s a different perspective on the condition.
Before being diagnosed life is like planning a vacation trip - to Italy.
You buy a bunch of guide books and make your wonderful plans.
The Coliseum. The Michelangelo David. The gondolas in Venice.
You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives.
You pack your bags and off you go.
Several hours later, the plane lands.
The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan.
They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine, and disease. It's just a different place.
So you must go out and buy new guide books.
And you must learn a whole new language.
And you will meet a whole new group of people you would never have met.
It's just a different place.
It's slower-paced than Italy, less flashy than Italy.
But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips.
Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy...
and they're all bragging about what a wonderful time they had there.
And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away..
.because the loss of that dream is a very very significant loss.
But...if you spend your life mourning the fact that you didn't get to Italy,
you may never be free to enjoy the very special, the very lovely things ...
about Holland.
Nutrition and exercise
Nutrition:
The Basics: If you’ve just been diagnosed with Parkinson’s Disease, you may be feeling worried about what you eat. Hopefully, the following information will encourage you to try out some recipes that maybe you have wanted to have a go at for a while, but you just needed an excuse
Is there anything specific to Parkinson’s? You may find yourself losing weight. Although this may be alarming at first, it is important to understand that the reasons for this, at their core, are no different from any other person who has lost weight; you have a created a ‘caloric deficit,’ or put another way, you are expending more energy than you are consuming through food. What separates someone with Parkinson’s from someone without are the reasons why this ‘caloric deficit’ has come about. The two main reasons for with loss are:
Tremors: Experiencing tremors can have the effect of expending more energy/
calories. Despite the involuntary nature of tremors, you are, essentially, moving more which, in itself, requires more energy. Therefore, on a day-to-day basis, it is very possible for your metabolic rate or energy expenditure is higher than the average person. Inevitably, burning these extra calories can lead to weight loss. The best and simplest way to overcome this is to eat a little bit more.
Medication can also have an effect on your appetite. When this happens it is easy to feel satiated without eating an adequate amount of food to sustain your weight. If you do find yourself losing weight and are not hungry enough to eat more there are many ways around it. You could think about supplementing with a simple meal replacement powder or better still, make a smoothie that is easy to drink and doesn’t feel like you are force-feeding yourself.
I’ve just been diagnosed with Parkinson’s disease, what should I do about what I eat?
It could be easy to feel that you must try to get everything right in your life, especially your diet, but you really don’t want to let your food and nutrition become another overcomplicated procedure where you feel strait-jacketed by what you eat and requiring effort which you otherwise did not have to make.
But I want to try and do the right thing about what I eat. The reality is that food and healthy nutrition doesn’t have to be complicated and right now you've got a great opportunity to experiment and have fun with food and eat healthily
But isn’t some food good for you and some not? A lot of diets tend to focus on separating nutrition into healthy and unhealthy food and each diet has a whole set of rules and restrictions. There are countless options on offer, all claiming to be correct. This can result in making eating feel like a confusing chore, which is such a shame. Food does not have to be separated into ‘good and bad’ categories,. For example, a diet that cuts out carbohydrates would mean that you’d be cutting out delicious foods such as rice, bread, pasta and many more. But these foods, despite their reputation in some places, are not unhealthy options and there is no reason not to eat them.
So does it matter what we eat? The reality is that although the process of digesting fat and carbohydrate are slightly different, the end product is the same and calories that the human body receives are put to use in the same way; as energy. In fact, in most cases, all the food you eat, including fat, will eventually be turned into glucose, which, at its core, is a simple sugar. So, as you can see, not eating fruit (for example) in an attempt at avoiding sugar, can be a misguided attempt at being ‘health
The best advice is to cook everything from scratch and to keep well away from all the different processed foods on offer. Having Parkinson’s is tough, and you want to do more good stuff to help you, and less of the bad stuff, like eating junk food.
Why do we have problems with food and obesity now? Throughout history, human beings have, in one way or another, had to prepare their food, whether this was cooking over a fire or walking miles and miles to find berries. Unfortunately, in this day and age, foods that contain processed sugar and fats that would never have fitted our ancestor’s idea of moderation are readily available straight off a shelf.
So what is the best thing to do? Are there any simple guidelines I can follow? Put simply, a refocus on the basic skill of raw food preparation would allow you to create food you love with full knowledge of the ingredients you have chosen to use. Choosing these raw ingredients puts the power back into your hands without relying on food manufacturers to choose for you with an unfathomable amount of sugar to keep you coming back for more. Focus on what you can eat rather than what you can’t and let your food fit your lifestyle, not the other way round. With this approach, everyone can find their individual preference towards food and create a sustainable healthy lifestyle around it.
If you love cake, make one and have a slice, there is nothing more satisfying than reaping the fruits of your labour!
Are there any good websites with recipes and ideas to inspire me? A really great website that I came across recently is www.eatforum.org Its a non-profit making initiative which brings together more than 30 world-leading scientists from across the globe to reach a scientific consensus that defines a healthy and sustainable diet which is capable of feeding a future population of 10 billion people a healthy diet within planetary boundaries?. Its a great website with loads of great recipes
Recipes to get you started:
Jambalaya
A great one-pot meal! It’s quick, easy and full of great nutrients and it’s lovely, cold the next day. Also, it’s very versatile, chuck in whatever leftover vegetables you have, change the meat, change the spices, even change the rice....the possibilities are endless.
Recipe serves 4 hungry people: Ingredients:
-400 grams of chicken, diced
-100 grams chorizo, roughly chopped -400 ml stock (or stock cube with water) -1 tin of diced tomatoes
-2 cloves of garlic, finely diced
-1 onion, diced
-1-2 red peppers
-100 grams of broccoli
-1-2 teaspoons smoked paprika -1-2 teaspoons thyme
-300 grams of Arborio rice
Method:
- 1) Heat a large pan over medium heat. When it’s hot add the chorizo and fry until
the chorizo releases its juices.
- 2) Turn the heat to high and add the chicken, fry until browned.
- 3) Once the chicken has browned add the garlic, onion, pepper, thyme, and
paprika and cook for 5 minutes until the onion starts to brown.
- 4) Now add the broccoli and rice, coating both with the mixture. Continually stirring, fry for five minutes or so.
- 5) Add tinned tomatoes and stir into mixture, simmer until mixture starts to become slightly dry again and then add the stock.
- 6) Turn heat down, mix once and leave to simmer until all the stock is absorbed and you can hear a faint crackling sound where the rice is crisping on the bottom. (This is a good thing; it adds a lovely texture and tastes great too.)
- 7) Turn off the heat and leave to stand with the lid on for 3-5 minutes.
- 8) Dig in! The texture should be like a thick porridge/oatmeal....comfort food at
its best.
Red Lentil Dhal
Although it’s slightly more complicated and has a longer ingredient list than the Jambalaya, it’s worth it.
Serves 4. Ingredients:
- 2 tablespoons butter (vegans can replace with more coconut oil) -1 TBSP coconut oil
-4 Garlic cloves, diced
-Thumb sized piece of ginger, grated
-1 onion
-1 TBSP cumin seeds
-1 TBSP coriander seeds
-2 cardamom pods
-1 TBSP curry powder
-50 grams dark chocolate
-2 tablespoons honey or coconut sugar -250 grams red lentils
-1 litre of stock (or stock cube with water)
- 1) Heat a large pan over a low to medium heat. Toast the cumin seeds, coriander seeds, and cardamom pods until fragrant. Crush cardamom pods and discard shells only.
- 2) Add coconut oil and half the butter and heat until very hot.
- 3) Add half the garlic and fry until charring (you want to almost burn it!)
- 4) Turn the heat down and add remaining spices, onion, and butter. Gently fry
until ingredients emulsify.
- 5) Now add chocolate and honey and melt into mixture slowly.
- 6) Rinse lentils and add to the pan, fry for a few moments to coat them in the
mixture.
- 7) Add stock and bring to a gentle simmer for 35-45 minutes until the lentils are
soft and the mixture is thick.
- 8) Season to taste and serve.
‘Cornbread’ shepherds pie
Comfort food for a night at home and much simpler than it first appears. Serves 4
Ingredients:
FOR MEAT BASE
- Tablespoon of any oil/butter
-400 grams mincemeat
-1 onion, diced
-2 garlic cloves, diced
-6-10 mushrooms, diced
-100 grams tomato puree
-4 splashes of Worcestershire sauce (or straight forward ketchup)
FOR CORNBREAD TOPPING 140 grams polenta or cornmeal 40 grams plain flour
1 TSP bicarbonate of soda
1 egg
75 ml of milk
250 yoghurt or buttermilk
- 1) Heat oven to 180 degrees Celsius.
- 2) First, make the cornbread topping. Mix all dry ingredients together well.
- 3) Then mix all wet ingredients together well
- 4) Combine the two and set aside.
- 5) Now make the meat base. Heat the oil in a large pan on high heat.
- 6) Add mince until brown.
- 7) Now add all other ingredients and fry for a while until mixture is thick and all
water is absorbed.
- 8) Pour the mince mixture into oven proof tray and pour cornbread topping over
the top.
- 9) Bake in the oven for 20-25 minutes or until a sharp knife comes out clean from the dough.
10) Leave to sit for five minutes and serve.
Smokey Maple Sponge
Give it a go! It might sound strange at first but the smoke works like bacon and maple syrup or salt and caramel. The sweet and savoury is delicious.
Ingredients:
300 grams of sugar
250 grams of butter
2-3 teaspoons liquid smoke (find in the sauce aisle in most big supermarkets) 400 grams self-raising flour, sifted
4 eggs
120 grams maple syrup, plus extra for serving
- 1) Set the oven to 180 degrees Celsius and grease an 25-centimetre springform pan, set aside.
- 2) Beat butter, sugar and liquid smoke together well until light and airy. You’ll get a lovely aroma from the smoke straight away!
- 3) Add the eggs one by one and continue beating
- 4) Add the maple syrup
- 5) Fold in the flour slowly
- 6) Spoon the mixture into your springform pan and bake for 35-40 minutes or
until a toothpick comes out clean.
- 7) Cool and serve with hot maple syrup poured over the top.
Exercise for Parkinson’s
The Basics:
I feel pretty healthy. Do I need to do any exercise or get fit?. In 1943, a psychologist called Abraham Maslow came up with a way of describing the basic human needs, the things we must have in place so that we can live and thrive. The most basic of these start with food, drink, warmth, sleep, and shelter and are absolutely necessary for survival. However, we also want to make sure that we are not only surviving but doing well, physiologically, and a key element of this is to be active and to keep fit and active. It becomes much easier to manage other more complex needs in our lives if we are fit and healthy. Exercising regularly and staying healthy is an essential component in our happiness and feeling great. The healthier and more active you are, the better you will be better able to cope with whatever Parkinson’s throws at you
How do I know if I am physically healthy? Being physically healthy means that all our bodily functions are operating at a level that can deal with all of our day-to-day activities. Your heart rate, blood pressure, insulin sensitivity (pre or type 2 diabetes) and your breathing rate are some of the measurements that we can use to indicate our levels of physical health. One of the simplest indicators to find out whether you might not be doing enough for your physical health. is weight gain. if you are worried about your state of health, It might well be worth popping to your GP for a health check.
What’s the difference between being active and exercising? Many of us are active daily. A person, for instance, with a job outside an office which requires them to stand up all day is active, however, they may just be standing or walking leisurely and this does not require much effort. What separates exercise from being active is simply the level of intensity. Good indicators that the level of intensity is high enough that you are exercising are sweating, elevated heart rate and the feeling that although the movement you are performing is possible now it might not be, at the same level of intensity, soon. Exercise should be good fun and enjoyable. Use your Parkinson’s to give you an excuse to try out some different activities such as walking, cycling, swimming, boxing. Join a club, or go by yourself.
Like food, you don’t have to overthink the process or follow a strict regime in the gym unless that’s what you want to do, simply moving more with a bit more intensity than you otherwise would just relaxing should be the main focus, it's that easy!
But what if I don’t feel up to it because of my condition? There might be days where you don’t feel like you can exercise or do what you planned to do. It's important to understand that there is nothing wrong with that and this is usually a sign that your body may be craving rest or a less intense form of exercise. On these occasions, it’s a good thing to listen to your body and not push yourself too hard or take the opportunity to rest altogether. Remember that these limitations are even battled by athletes at the top of their game, rest weeks or even months are an essential part of
their training regime. Give yourself a break with the knowledge that you have earned some time to enjoy doing something else.
Are there any specific exercises I can do which might help my Parkinson’s? there is no harm in including a few strength and coordination exercises once or twice a week. Stimulating your muscles in a way you may never have with a few simple exercises (outlined below) will help practice skills which Parkinson’s is trying to take away from you and in this regard, it could be of great benefit.
There are many websites which have exercises specific for Parkinson’s Disease, including: https://www.parkinsons.org.pk/download/BeActive_Feb2008.pdfhttps:// www.parkinsons.va.gov/NorthWest/Documents/Pt_ed_handouts/ Exercise_for_PD_1-20-12.pdf
Or you may prefer to join a class, such as Nordic Walking or Rock steady Boxing.
references
Diagnosis Problems
1. BMJ Journals. Medical Humanities‘There was no great ceremony’: patient narratives and the diagnostic encounter in the context of Parkinson's
Dr. Jane Peek
Department of Clinical and Experimental Medicine, Brighton and Sussex Medical School, University of Sussex, Brighton BN1 9PX, UK; j.peek@bsms.ac.uk
2. NCBI Journal of Neurology Patient experiences of receiving a diagnosis of Parkinson’s disease. A. Schrag, corresponding author1 S. Modi,1 S. Hotham,2 R. Merritt,2 K. Khan,1 L. Graham,3 and A on behalf of the European Parkinson’s Disease AssociationNCB!
3. Neurological Alliance 2014 and 2016 Reports into patient experience
4. Improving the diagnosis experience for people with Parkinson’s. Only 15% of people feel supported after their diagnosis, 43% of people felt scared, 24%of people weren't given enough time to talk about their diagnosis, 33% of people were given written information
Self Management + Howard Leventhal’s Common Sense Model + Bandura’s model of self- efficacy
1. JAMA Online article and related content current as of September 14, 2010. Patient Self-management of Chronic Disease in Primary Care
2. Thomas Bodenheimer; Kate Lorig; Halsted Holman; et al. Self-Regulation Model of Illness Applied to Smoking Behavior in Lung Cancer
Kristine K. Browning, PhD, CNP,*† Mary Ellen Wewers, PhD, MPH,* Amy K. Ferketich, PhD,* Gregory A. Otterson, MD,†‡ and Nancy R. Reynolds, PhD, FAANδ
3. Americ]an Journal of Public Health. Self-Management: A Comprehensive Approach to Management of chronic conditions. Patricia A Grady, RN PhD and Lucio Gough PhD
4. University of London Institutional Repository. Thinking positively about chronic illness: An exploration of optimism, illness perceptions and well- being in patients with Parkinson’s disease Hurt CS*1, Burn DJ2, Hindle J3, Samuel M4 Wilson K5, and Brown RG6
ResearchGate The Common-Sense Model of Self-Regulation of Health and Illness: The Self- Regulation of Health and Illness Behaviour. Howard Leventhal
Universal PERSONAL CARE NHS 2019
https://www.verywellmind.com/what-is-self-efficacy-2795954
Trauma
1. About trauma theory.com Bion’s Trauma and Trauma Theory Posted by: calford@umd.edu On November 8, 2015
2. Wikipedia: Psychological Trauma
Parkinson’s scales and studies of People with Parkinson’s
1. http://tools.farmacologiaclinica.info/index.php Unified Parkinson Disease Rating core
2. NPJ Parkinson’s Disease
Use of a self-rating scale of the nature and severity of symptoms in Parkinson’s Disease (PRO-PD): Correlation with quality of life and existing scales of disease severity
3.Laurie K. Mischley, Richard C. Lau & Noel S. Weiss
What happens overall to Parkinson’s patients? In the CamPaIGN study of
Parkinson’s, a 10-year outlook in an incident population-based cohort found that at
10 years:
4. Foltynie et al Brain (2004) The cognitive ability of an incident cohort of Parkinson's patients in the UK. The
CamPaIGN study. Mar; 127 (Pt 3):550-60. Epub 2003 Dec 22.
2 Chaudhuri K Ray et al (2015) Non-motor symptoms in Parkinson’s disease 2nd Edition Oxford
University Press Oxford
3 Williams-Grey CH et al 2013 The Campaign Study of Parkinson’s disease: 10-year outlook in an incident based
population cohort J Neurol Neurosurg Psychiatry 2013
4
· 55% were dead
· 68% had postural instability during the course of Parkinson’s · 46% developed dementia
· 23% had a ‘good outcome’ (no dementia or postural instability during the course of Parkinson’s)
A randomized controlled trial of an educational booklet for patients presenting with back pain in general practice.
M Roland and M Dixon
Breaking bad news
!. Education Research: Communication skills for neurology residents 1. Structured teaching and reflective practice
Christopher J. Watling, Judith B. brown://n.neurology.org/
Section 3
Useful resources
SPIKES
The SPIKES model was first published in The Oncologist in 2000 as a protocol for delivering bad news to cancer patients.
Since then, it has been adopted more widely and used by clinicians in various circumstances to communicate difficult news to patients in a way that is clear, supportive and compassionate.
Set up
- Think about what you want to say in advance.
- You may wish to suggest to the patient that they are accompanied by a friend or relative.
- Choose a time and place which will allow for privacy and quiet, considered discussion. Make sure there is enough seating in the room, and turn off or mute any electronic devices so that the patient has your full attention.
- Establish rapport with the patient and maintain eye contact.
- Allow enough time for the patient and/or their relative to express their emotions and ask questions.
Perception
- Use open-ended questions to determine the patient's understanding of their condition. This will help you tailor the way you deliver the information and where you begin.
- Check that the patient is able and willing to hear what you will say. They may give you an opening to start the discussion, or they may try to avoid hearing what you are saying.
Invitation
- Most patients will indicate that they want full information, but some may shun information as a coping mechanism.
- If patients do not want to hear details, you can offer to answer any questions in the future or speak to their family or friend.
- Use language appropriate to the patient's level of understanding. It can help to reflect the patient's words and body language.
- Avoid unnecessary jargon and euphemisms, which could impair the patient's comprehension and create a barrier to communication.
- Be sensitive to how the patient is reacting, and provide information at an appropriate pace.
Knowledge
- Warning the patient that you have bad news may reduce the shock of disclosure.
- Give the patient and their friend/relative enough time and space to absorb the information and ask questions.
- If there is any doubt about the prognosis, explain this and the options for clarifying uncertainty.
- Give the patient information regarding next steps, such as follow-up appointments. If this is not possible, offer them a realistic timescale of events and reviews. The patient should also be told who will be in charge of their care and how they can contact them.
- Reassure the patient of ongoing support. This will help them to cope and feel less isolated.
- The patient and relative/friend may differ in how much information they want or require. If you sense a disparity, check that the patient is happy for you to speak to their friend/relative separately.
Empathy
- Don't make assumptions about what the patient might be feeling. Encourage them to express their concerns, and respect their wishes about how much information they are prepared to hear.
- Observe and validate the patient's emotions and give them enough time and space to express their reactions.
- Remember that all patients are different.
Strategy and summary
- Make sure the patient has understood by asking them to briefly summarise the main points of the conversation. Encourage them to express their concerns.
- Provide reading material for the patient to absorb when they are ready.
- Suggest that the patient note down any questions they'd like to ask you at your next meeting, so you can be sure you are appropriately exploring their understanding.
useful websites
Watch Life is People
Watch Living with Parkinson's - A Survivor’s Guide. by Professor Simon Lewis