I was diagnosed in 2009 (the exact date escapes me). This article is intended to share my story of the lead up to that day, explain the issues I faced with the manner in which I was diagnosed, and provide a retrospective analysis, based on all that I've learned in the meantime. It is my hope that decision makers in healthcare can learn valuable lessons from a poor experience. which I know, through a very large network of people with PD all around the world, is not an unusual narrative. Reform in this regard would help to lessen the long term negative impacts due to way diagnoses are currently being handled and presented.
Secondly, I hope that this will be most helpful for people newly diagnosed with Parkinson's Disease or its variants, and their families, by providing an informed and independent perspective from the inside. It is also intended to inform those of us already further down the road about just how much the "negativity narrative" and lack of provision of helpful information at diagnosis may still be impacting our condition today.
Background to Diagnosis
As is usually the case with Parkinson’s Disease, my actual descent into PD begins much earlier than diagnosis, so it’s not clear when or how my disease actually began. I do know I was a very stressful person and I strongly believe this was a major contributing factor. I expected far too much of myself in my life and my career and forgot to enjoy the moment - and life in general. I also suffered from chronic irritable bowel syndrome for many years, and while it is not absolutely clear whether this is related, there is now a lot of research suggesting that PD is indeed connected to gut and digestive issues, or that these may even be a causal effect:
My gut feeling, if you will forgive the pun, is that there is a strong connection between these three factors of stress, IBS and PD onset.
When did I first notice? Again, it is hard to tell, as anxiety and depression are also strongly correlated with PD. Were these the first signs or were these causal? If there is a connection to depressive states, then it notably began in my teenage years. However, the first very obvious physical signs became apparent in my mid-thirties. It started in my left hand. Simply put, my fingers became hard to use, much as if I had been out playing in the snow with no gloves on for a time. Looking back, the first classic sign of PD was when my handwriting became smaller and smaller. From my hand, the stiffness travelled up my left arm and there began a time of intense pain in my left shoulder.
At that time, as now, my work was heavily orientated to sitting in front of a computer. Like many, back then, I knowingly disregarded the importance of posture and coffee breaks. Once more, the causal relationships are not clear, but this strain on my body could be a contributing factor. At the time, I put the pain simply down to that bad work practice, and assumed I could rectify it.
This pain in my shoulder eventually became so bad that I went to my doctor, who diagnosed me with frozen shoulder, prescribed me pain killers and put me on the UK National Health System's waiting list for physiotherapy, which would be many weeks away. The pain killers made me sick, the problem only got worse and worse and eventually I could not wait any longer, especially because my right side had started to stiffen up and become painful, too.
I decided - or the intensity of the pain decided for me - to pay for private physiotherapy. The therapist was good and did her best, and whilst visiting once or twice a week, I did get some relief, it never lasted. Within about six weeks I had started to shuffle when I walked – another classic sign. The physiotherapist became concerned, she threw up her hands and sent me back to the doctors with a letter. Perhaps luckily, I got to see a junior doctor in training who, unsure of himself, then referred me both to a neurologist and muscular-skeletal expert.
My Diagnosis Experience
Both specialists independently diagnosed me with PD and so I was put in the care of the neurologist. This is when things went from bad to worse, looking back. After the initial diagnosis with one of the neurologist's interns, an appointment was made for few weeks later with the neurologist herself. That appointment still haunts me and my family. Remember, we knew nothing at all about PD at the time and I made no effort to read up on it, because I was relying on the specialist to give me the expert information I needed. I assumed she would be there to answer all my questions. I met that particular neurologist only once. In the half hour I sat in the office, I was told firstly that the MRI scan indicated that I had something called Parkinson’s Plus – a virulent form of the disease which might not respond to drugs. This turned out to be incorrect.
It is my recollection that, still not armed with much information, I was asked to make a choice between starting drug therapy or wait to be put into the care of PD specialist neurologist at my local hospital. Still desperately asking for clarifications and more information, the appointment ended when the neurologist said, putting a hand on a stack of case notes on the desk, “I’m going to have to ask you to leave now, because I have this pile of patients to get through”. You will understand why these words have stayed with me verbatim. You will understand the long term damage this did to me, too, I hope, and why what happens at diagnosis of PD, in my view, is in dire need of a system wide agreed upon set of best practice guidelines. More about this below.
The story of my early care from there is mixed. A local doctor was both very supportive, but also misinformed me unintentionally due to a lack of knowledge of the condition. I was effectively lead to believe, being diagnosed in my early thirties, that I needed to grieve for the second half of my life which I had now lost to Parkinson’s. However, the doctor was also very good at getting me into see another muscular-skeletal person I had researched, who was an expert on thoracic outlet syndrome – it turned out I had two issues in one. Again, any cause and effect is unclear, but it seemed that, according the muscular-skeletal department at least, the intense pain in my shoulders was not due to PD inherently, but to this issue with trapped nerves. The surgeon I found was superb and did everything he could to avoid surgery. Thankfully, good physiotherapy cleared that part of the problem up, and perhaps gave me the exercise strategies which allowed me to correct my posture easily later in the story. I discuss the thoracic outlet aspect of my diagnosis and aftercare in:
However, the local Parkinson’s Nurse Specialists gave me a much brighter outlook and assured me all was not lost. My PD nurse was my rock in those days. Unfortunately, the narrative had been set by the events around my diagnosis and, due to exactly the wrong environmental conditions, I still lost myself to the darkness of hopelessness and depression. Six years passed. I existed in a kind of half-life. I have nothing to say about that time. Not because I don’t want to talk about it, but because I have literally nothing to tell you. I was a ghost.
Turning Things Around
In late 2015, I was offered six sessions of counselling, as arranged by my PD nurse. It was only this intervention which gave me enough of an alternative perspective to begin to turn things around.
I started to take responsibility for my own wellness. I became the gatekeeper to my own knowledge and understandings, both of myself and Parkinson's Disease more generally. I unilaterally decided that my neurologist and nurse would become part of my wellness team, and serve only in an advisory capacity, but not make health decisions for me, and if they gave advice which turned out to bad, I would not stick with them, and no longer call on their services. I also decided that, while they were knowledgeable in the conventional pharmaceutical treatments of PD, the breadth and depth of their training in aspects of human health in general was lacking, and they were by no means the experts in Me. Thus I began "out-thinking" this disease.
Diagnosis in Hindsight
I now would like to return to some of the key points which happened at diagnosis and review them from the perspective of what I have learned over the past two years for myself, and what I learned about myself too. This reflective analysis also, I believe, helps shed new light on fundamental questions about PD diagnostics, in particular on the questions:
- Why do some people suffer from seemingly more virulent forms of these diseases?
- Why are some people much less responsive to the drugs than others who have been diagnosed with the same condition?
As outlined above, when I was first diagnosed in 2009, the first neurologist scared me nearly to death (quite literally) by telling that my brain scans indicated that I actually had the virulent form called "Parkinson's Plus" or "Multi-System Atrophy" - a form which is unresponsive to the drugs and in which decline is much more rapid. Remember, I knew absolutely nothing about these diseases at this point in my story, so you can imagine the abject terror she left me and my family in. She referred me to the PD second, specialist neurologist, who several weeks later disagreed with her opinion and gave me a diagnosis of more standard Ideopathic Parkinsonism instead. So one lesson we may learn from this is that interpretation of brains scans is far from an exact science, and their diagnostic value may very much be in the eye of the beholding doctor.
However, which of the neurologists was right in their evaluation of the scans? My initial experience was that the truth lay somewhere in between these two diagnoses. But I now know the truth is that were both as wrong as each other. As hinted at above, by the end of 2015, I was in a right sorry old state. My decline had indeed been fairly rapid, and my condition was far from stable. I had, in that time, tried virtually every Parkinson's Drug there was. I must remind myself to take a photo to share of of all the packaging I still have of the plethora of drugs that the neurologists experimenting on me with over the years using pure true and error - and there was a lot of errors! Hardly any of the myriad of drug combinations had really worked for me. By this time, I was on a cocktail of quite a lot of PD drugs, yet even then, they were still very hit and miss and often would not kick in at all. So from this perspective, it would seem I was indeed somewhere quire close to the more virulent PD diagnosis, after all.
Now fast forward again to today. Through application of all the pragmatic and practical interventions which are covered in these articles, my condition has now very significantly improved, my pain and symptoms are actually very much less than they were at diagnosis. At the same time, I have been able to cut my drug burden very considerably and continue to get more benefit, on average, per dose.
What we now know, therefore, from all my self-experiments, many of which have have been far from successful too, is that the virulence of my disease and my responsiveness to medication aren't intrinsic (to me) factors, but are actually extrinsic or environmental. If my diet had been even poorer, stress levels even higher, or the exposure to my toxins, allergens and other negative environment factors greater, during those early years, then for my decline would have been very much quicker still and the drugs would have been even less effective.
As a definite example, if I'd been given an iron supplement, or even a multi-vitamin with iron in, at the time of diagnosis, I am fairly certain I would be dead by now, if I'd unwittingly ingested it on a daily basis and had continued to do so. Indeed, I have learned the hard way that iron is highly poisonous to me through personal experience (pain, worsening of symptoms and blocking of the medications), conclusions which are fully supported by scientific research.
Therefore, under one set of environmental conditions, especially in regards to diet and nutrition, I do have a virulent form of Parkinson's which is unresponsive to PD drugs, yet under another set, I have a slow progressing form of PD and the drugs help me a lot. Indeed, perhaps in a parallel universe, under perfect conditions, sustained and optimized, I am no longer ill at all and don't need the drugs anymore? I continue to research and test quality of life interventions in pursuit of that ultimate goal. However, all my progress so far has only been possible by finding and working these things out for myself, and none of the (very limited) information or support I was given at or after diagnosis has helped me in this regard, whatsoever.
Proposal for Reform in the Diagnosis and Treatment of Parkinson's Disease
I hope that my experience might be a catalyst for change, because, in speaking with a significant network of people with PD around the world, there are many with diagnosis and aftercare treatment experiences even poorer than my own. I feel, therefore, we do need an overhaul of how the healthcare diagnoses and treat people with Parkinson's. Simply stated, the current experience of too many PwP (People with Parkinson's) is that they are prescribed drugs as a singular treatment pathway and given a narrative of hopelessness at diagnosis.
I would therefore like to propose the following. Firstly, we need a proper, evidence based approach, where it is not just clinical evidence, but where the real world, real life evidence of PwP themselves are taken into account. This would generate better therapies and improved information, which could be provided to PwP and their families at the point when people are diagnosed. "Drugs only" support should, given all the evidence from real lives of real people, become morally inappropriate. In my view, what PwP need to be receiving at diagnosis, should at least include:
- Mental health [counselling/therapy] and Stress Management;
- Diet and Nutrition advice and support [ongoing!];
- Movement and Music therapy programmes [tailored!];
- PwP to receive more than just a ten minute stressful appointment with one neurologist every six months;
- Agreed upon written targets, such as working towards drug burden reductions;
- Access to the shared experience of other people with PwP, these to count as equally valid and relevant as the advice of neurologists;
- Mechanisms to inform other PwP of their own experiences too, so that shared stories form a knowledge database;
- Neurologists and other Healthcare practitioners to be expected to undergo regular continual professional development with a reasonable expectation that they can demonstrate a good awareness of the findings of the most recent World Parkinson's Congress meeting.
- For it be recognized that recovery from PD is not just about a cure, but involves personal growth, self-realization and necessary change of lifestyles which we now know contribute to the original decline into the disease.