Whether you believe the mind and body are separate entities or two descriptions of the same thing, I think experience teaches us that the physical gives rise to a mental response (e.g. breaking your leg causes the experience of pain). Therefore, the changing physicality in Parkinson’s inevitably impacts the emotions of a sufferer.
In the absence of a cure, it is equally important to treat the mental impact as it is to treat the physical symptoms. Treating the physical only goes half way in coping with Parkinson’s; it doesn’t address the problem of living with (and ultimately living alongside) the disease and setting up a helpful emotional relationship with the physical changes caused by Parkinson’s. The mental is the source of motivation and planning and strategy, all crucial things when coping with a disease. If the emotional impact is marginalised these key parts of the arsenal used to tackle Parkinson’s will be neglected, thus making the physical even harder to deal with.
Parkinson’s impacts the physical and mental. Therefore, both should be tackled with treatment to enable the sufferer to live with this chronic disease.
Happy New Year,
I totally agree that the effects of Parkinson's on the mental state should be addressed. How do you think this can be achieved?
Happy new year! You ask a daunting question! I can only speak from personal experience.
I think the major challenge of Parkinson’s is the chronic nature of the disease and the need to live with and adapt to its changing nature. The emotional impact would be less demanding if treatment of the physical symptoms was better but, alas, we all have to live now with the disease and the treatment available.
I was told I might have Parkinson’s in January 2012 and I was finally diagnosed in April 2012. That three month wait was the most exquisite torture. I felt glued to the floor. I couldn’t get on with my life or start the process of coming to terms with the disease and I wasn’t able to access any services because I was yet to be diagnosed. I had to deal with the emotional impact of Parkinson’s without any professional support (I was already, without knowing the cause, dealing in my own way with the physical symptoms prior to my diagnosis). I tried accessing my local mental health services but was told there was a nine month wait. It was a despairing and desperate time.
The way I found to cope with the mental impact of Parkinson’s was to try cognitive behavioural therapy (CBT); I met a brilliant private therapist who has offered me the tools and strategies to reassert myself in the face of Parkinson’s. I believe all sufferers and their families, from the moment the possibility of Parkinson’s is raised, should be offered therapy.
Therapy is a confidential place where you see an unbiased, supportive person who gives you the time and space to explore your thoughts and emotional reactions. They will also gently challenge your automatic patterns of thought and offer strategies to help you think and feel in alternative, more helpful ways. Sometimes we get lost in the minutiae of Parkinson’s so it’s beneficial to be reminded to look up from the Parkinson’s microscope and see the whole person you are. You have to be open, honest and work hard, successful therapy is based on how you respond and learn.
Don’t dismiss therapy because it can’t eliminate the fact we have Parkinson’s or the decline we are facing. But taking tablets also doesn’t offer a cure so why do we take them? Obviously to reduce the impact of the disease. Therapy is designed to do the same but in a much more personal and empowering way. The best therapy gives you the tools to be your own therapist. You can’t think yourself cured but you can think yourself to a better, more productive and helpful emotional relationship with Parkinson’s.
Hi dr jonny,
Well done.You have arrived at the conclusion of everything that IS,concerning EVERYTHING,including Parkinsons.We each have our own baggage,even before PD diagnosis.The physical cowers beneath the mental.Which ultimately wrestles all control.
Neurologists don,t see this,most people don,t see this.The mind and emotions totally govern the physical.Without getting into and curing the mind,the physical will languish in Limbo.
You now make perfect sense.
The mind is no more than a blancmange full of chemicals and its those that control emotion and thought. Also if you had your head parted from the torso that would induce a modicum of pessimism. I reckon they are symbiotic. One no more or less important. Perfect balance/ harmony.
An interesting post Dr Jonny.
To me it makes perfect sense that the two are interlinked - and that the imbalance caused by lacking one vital chemical will have enormous knock-on effects on the body both physically and emotionally.
I find it incredibly frustrating that neurologists don't seem to have made that connection, and they are the ones who have devoted so much time to studying the brain and the impact it has upon all aspects of everyday living.
Yet again it would seem that it is down to the individual to seek help via complementary therapies in trying to live with Parkinson's, when it would, to me, make more sense to offer these as part of the treatment; it could actually make the neurologists lives easier!
I couldn't agree more with Dr Johnny. As a former lecturer in psychology I was incredulous when I was first diagnosed and realised that amongst medics there was absolutely no recognition of the psychological effects of having PD, let alone any provision of psychological support for PWP. In the ten years since my diagnosis nothing has changed; it's really very shocking.
Quite apart from the obvious fact that any chronic/degenerative disease is going to have a major psychological impact on both the sufferer and their family, PD is a BRAIN disease, for goodness sake! Of COURSE it's going to have a massive psychological effect; everything we think and feel, our very core 'self', is actually purely a function of the levels of bio-chemicals (neurotransmitters) in our brain. And ours are, to put it bluntly, shot to bits, both by the disease and then by the drugs used to treat us. So it's blindingly obvious that we are likely to have as many psychological effects as physical - maybe even more! We all like to think that our personality is something that exists outside our biology - but I'm afraid not, it's all chemical. As Frances Crick famously observed 'you, your hopes, your dreams, your joys, your aspirations your very self are nothing but the behaviour of a vast number of nerve cells' And our cells are highly disrupted - so our selves are also disrupted. And that causes distress - sometimes acute, sometimes unbearable (The quote may not be word perfect but I'm too apathetic to go and check it. I used to be a perfectionist!)
While the physical effects are no fun at all,I have found the psychological effects to be devastating. From the over prescription of agonists 8 years ago which temporarily changed my personality and led to the end of my marriage, to the loss of motivation and now massive daily mood swings from 'normal' to searing despair as I go 'off' and 'on'; these are the aspects of PD that are destroying my quality of life. And it's no good expecting a non specialist 'counsellor' either in the NHS (CPNs) or privately to be able to help.In order for psychological help to be effective the therapist must understand both the biochemistry of PD and the effect on the person both of that disrupted brain biology and of the impact of the prognosis.
There is at least some (though not enough) provision of psychological support for people with brain injury, stroke, Alzheimers. But nothing at all for Parkinsons. In my local area it was suggested that I went to a local 'support' group. I went. It was not a good experience. I'm sorry but sitting round a formica table playing bingo whilst sucking on a custard cream is hardly therapeutic.
I have some questions arising from my expereince:-
What is Parkinsons UK doing about raising the profile of the psychological impact of PD?
What is it doing about making neurologists/consultants/GPs aware of the psychological needs of their patients with PD?
How is it helping to provide properly trained psychological therapists for PWP?
I'm sure I am only one of many who would be delighted to offer our help and advice freely, both professionally and as a PWP to ensure such efforts were successful.
And I accidentally changed the sex of Francis Crick. Apologies!
I totally agree with all that has been said. I know that my mental state directly impacts on my physical well being.I went away twice last year, and each time my health vastly improved because I was away from stress. Nothing changed in my physical routine, the only difference was in my mental outlook. I'm sure this affects many people in the same way, which proves what you are all saying.
Thanks for your question, wobbly.
It's a really important one and one that touches on the support and information we offer across a number of areas.
I've passed it along to our Professional Engagement, Resources and Information and Support teams for responses.
It will take them a bit of time to outline and pull together information on all that we're doing in this area. We'll post an answer next week if that's okay with you.
Look forward to reading it.
An objective diagnosis misses the subjective impact of Parkinson’s, resulting in a lack of professional psychological help when a Parkinson’s diagnosis is given. This highlights an important aspect of curable and chronic disease. When a disease has an effective treatment or cure the responsibility for dealing with it is in the hands of the doctor and the patient is relatively passive. In contrast, the major challenge of a chronic disease is living with it and therefore the patient becomes much more active in the treatment. But this shift of responsibility is placed in the hands of a complete medical novice. A patient with a chronic disease likely hasn’t gone to medical school or dealt with anything like it before. Therefore, patients should be empowered with knowledge and strategies to cope at the time of diagnosis, ideally with professional psychological help.
When I was given my diagnosis, I stopped listening after I heard the words "You have parkinson's disease".
I agree there should be an opportunity to talk through the diagnosis and be supported through it ( at all stages, not just at the beginning as this is an ever changing condition) however I do not think that the time of Dx is the right time.
I think that at diagnosis, another appointment should be made for a fortnight / month afterwards, to give the pwp a chance to talk it through when they are in the right state of mind to listen and absorb the information.
Sorry it took a while to get back to you but there was a lot to get in this post. Training
By way of background, Parkinson’s UK has a team of 14 local Education and Training Officers who deliver education and training to a variety of health and social care professionals, including psychiatrists and psychologists. They are also supported by a team of volunteer educators. Last year the team reached 17,990 health professionals.
A key part of the training delivered is highlighting the psychological effects of Parkinson’s and the importance of recognizing and treating the non-motor symptoms of the condition generally. We cover the psychological side effects of drugs and also the general impact of depression. In fact our presentation for GPs emphasises GPs recognizing the importance of non-motor symptoms in Parkinson’s. Our resources
We take every opportunity to discuss the emotional impact of a Parkinson’s diagnosis and the psychological and mental health issues. We go into differing levels of depth depending on the audience.
• 'Parkinson’s and you' is aimed at the newly diagnosed so we just touch on the psychological issues you might face and what can help.
• In 'Living with Parkinson’s' we look at mental health issues in a little more depth as the audience is people who have been living with Parkinson’s for some time.
• There is a section dealing with non-motor symptoms in our 'Professionals Guide' which is currently being updated.
• We have produced a best practice guide for psychologists which was co-produced with their professional organisation and is downloadable from our website.
• Other initiatives--such as our recent Q&A here on depression in Parkinson’s http://bit.ly/10G2K63
--are highlighted in our Professionals’ newsletter.
This year will be looking into whether there’s any information gaps about the psychological effects of Parkinson’s in our publications. There’s more information in the ‘Get Involved’ section below about how you can help with this effort: http://bit.ly/WPw4mU Research
Our research has helped people see Parkinson's as more than a movement disorder and has lead to more focus and better care for the non-motor symptoms –including depression and memory loss.
We funded the largest and most detailed study of depression in Parkinson’s anywhere in the world. The team studied hundreds of people with Parkinson’s, monitoring the progress of their Parkinson’s and carefully investigating any mood changes that they experienced.
This project finished recently and we're writing up the results which we'll add to our website once they're ready. You can find out more about the project here: http://bit.ly/Vn5WhV
. And you can keep updated with our research results here: http://www.parkinsons.org.uk/researchresults
More information on the range of areas that we provide information on the mental health aspects of Parkinson’s is here: http://bit.ly/N9Ymq9
I know it’s a long post but I hope it answered your question.
Head of Professional Engagement and Education
It is my experience of Parkinson's that the biggest challenge isn't the motor symptoms or depression, it is finding a way to live with the impact of the motor symptoms and depression. There is a difference between a list of symptoms and the experience of having to live with them. On a good day my symptoms are less of a problem because they don't impinge on what I want to do. On a bad day my symptoms are a problem only because they limit what I can do; not because they happen to be there. The crucial thing that needs to be tackled and addressed in advice is the impact the symptoms have on daily life; saying you have rigidity, tremor, slow movement and depression isn't enough.
For example, I was never told that living with Parkinson's is a complex balancing act between being active and taking rests to preserve energy, that it involved knowing when to push boundaries and when to consolidate. No strategies were offered to help me balance my new life or to deal with the mourning process after diagnosis. I had to grope in the dark by trail and error to cobble together a strategy myself. Indeed, I learnt the need to balance my new life because I pushed myself too far and passed out from exhaustion. I understand it is impossible to offer advice on the particulars of every case but there is an issue of making advice so general that it applies to no one. Of course listing symptoms is important but the practicalities of the impact these symptoms have on daily life should then be addressed. Sufferers should be asked what they found useful and advice should be partly based on that as well as medical opinion. We are a largely untapped resource!
Living with the symptoms (and not necessarily the fact of the symptoms) is the major challenge of having a chronic disease.
Thankyou for your reply. I appreciate all the work done by individuals working for Parkinsons UK . My concern is whether all their efforts are translated into effective support for PWP at the point of interaction with professionals.
I can do no better than re iterate everything Dr Jonny says in his post above - especially the second paragraph. There is all the difference in the world between telling health workers, families and PWPs the 'fact' that PD causes depression and putting in place effective support for PWP and their families;support which is informed by an understanding of the psychological impact of the disease.
An example of an illness where the psychological needs of patients are understood and inform all practice from diagnosis until, if relevant, end of life, is breast cancer. Practitioners and patients are not simply told 'this may cause you/your patient to feel depressed/guilty/anxious etc' and then left to get on with it. By listening to patients and their families, practitioners have developed sensitive understanding of their patients' psychological needs- this enables them to deliver care in such a way that both physical and psychological needs of different individuals are recognised and, as far as possible, met.
In ten years of meeting a variety of Parkinsons medics I have been repeatedly shocked by the complete absence of any recognition of the psychological needs of PWP and of how these needs should shape and inform consultations and interactions between patient and therapist - whether neurologist, GP. nurse etc. This is not the place to rehearse my many experiences of, at best, crass insensitivity and, more usually, unforgivable ignorance that I have met at the hands of supposed PD specialists. And I know I'm not unusual; I have lost count of the number of PWP who have told me how much they hate going to their hospital appointments, how depressing the find the whole experience.
Recently I transferred to a big teaching hospital. For the first time I met a neurologist who felt that I had been through so much that it was very importatnt that she found some psychological support for me. SHe warned me that it would be 'almost impossible' to find anyone with relevant knowledge but assured me she would persevere. She told me that there was no psychologist, or any sort of psychological support, attached to the PD team. After six months of letter writing and searching, the best she could come up with was a clinical psychologist from the local university with a research interest in cognitive decline in Alzheimer's. I have met her and she confessed she had no experience of working with people with PD. So that's a huge teaching hospital with absolutely no psychological support for PWP.
I don't doubt that Parkinson's UK is researching and producing information about the psychologicl impact of PD. The question is why are so many professionals involved with PD apparently unaware of it?