“You’ve got that compulsive… bloody… disorder.’ -my dad
Words from my dad. I was keeping him awake most nights, pacing the hallway outside his room. The thing was, I couldn’t go to bed without walking in and out of my room until it felt …right. First, I would make my bed and shake the duvet five times. If I lost concentration or had a certain thought, I had to shake the duvet five times more. Then I would go to the loo, and go back to my room, that’s where my pacing came in. Closing the door had to be done correctly too, a certain number of times or until it felt safe to move on. All of this was just too loud for my dad.
On a good night, this took around an hour. On a bad night, it could take two and a half. It was like there were two parts to me, one part was saying ‘this is so stupid, go to bed,’ and the OCD part was saying ‘walk in and out of your room again, do it again, do it again, do it again or something awful will happen.’
Obsessive Compulsive Disorder (OCD) affects 1.2 % of the population, 12 in every 1000 people. It is a condition characterised by intrusive thoughts (obsessions), and behaviours aimed at ‘neutralising’ these thoughts (compulsions). Everyone has intrusive thoughts. They are those unwanted, nasty thoughts or images that unprecedentedly infiltrate your consciousness. If you are driving and you stop at a red light, you might think ‘what would happen if I took my foot off the brake and hit all of those people?’ When healthy people experience intrusive thoughts they are quickly dismissed, unstudied. In OCD the thoughts dominate, causing a lot of anxiety.
‘Your dad will attack you.’ That was my main thought. Most nights, just thinking the word ‘attack’ while I’m in the middle of a compulsive behaviour means I have to start the whole thing again. There was nothing in the physical world to give that thought any meaning. Intrusive thoughts are like that, rarely grounded in reality. As a sufferer of OCD you worry that because you thought something dreadful, it might actually happen.
I was about 8 when I first started showing symptoms of OCD. At 13 my dad said the ‘bloody…disorder’ thing. I didn’t think that could describe me – my actions were about getting into bed, not washing my hands. That’s what OCD is, right? I had no idea what it was until I was around 15, when I learned more about mental health disorders. At 17 I went to the doctors, made some awkward jokes, and blurted out that I thought I had OCD.
In OCD there is often a vicious cycle, where intrusive thoughts cause anxiety, which is (somewhat) reduced by compulsions. This means that in an attempt to reduce future anxiety, compulsions are repeated. The compulsion also reinforces the thought. It is never proven that if you don’t act on a thought nothing bad happens, so the negativity of the thought gets stronger.
A common compulsion is checking things; checking doors are locked, checking you turned the hob off. Everyone checks, but it becomes extreme in OCD with people checking many times. There is evidence that the more frequently someone checks something, the less they are able to remember what state it was in (Radomsky, Gilchrist & Dussault, 2006). Researchers tasked healthy individuals with checking whether a virtual ‘hob’ was on, either twice or twenty times. Those who checked the hob twenty times were less certain whether it had been on last time they checked. This shows how compulsions in OCD perpetuate the disorder. They feel like they’re making it better, but actually they’re making it worse.
What can help someone with OCD? There are a number of therapy types, and even medication, that can help. In particular cognitive behavioural therapy is proven to be very effective. It educates sufferers about the disorder, teaches them to recognise obsessive thoughts and change negative compulsive behaviours. Understanding my disorder was the thing that helped me most. I’m now the best I’ve been in years, and I’m glad. There was a stage where I had to tap each of my limbs 16 times before I got into bed. Imagine doing that when you want to sleep over at your boyfriend’s house.
In order to teach myself that my thoughts had no determinative effect on the outside world, every time I had an intrusive thought I would force myself to have another thought – ‘in 10 seconds your hand will explode.’ I would count to 10. My hand never exploded.
Parkinson’s disease (PD) owes its name to Doctor James Parkinson, who in 1817 described the disorder in his manuscript “An essay on the shaking palsy”. It has been 200 years since we began to study this disease, and despite the advances in understanding, we are still far from finding a cure.
PD is the second most common neurodegenerative disorder affecting 1-2% of the worldwide population. The pathological hallmark is the loss of dopaminergic neurons in a very small part of the brain called the Sustantia nigra, and the presence of protein depositions called Lewy bodies1. The loss of dopamine leads to a number of motor symptoms: bradykinesia (slowness of movement), rigidity, resting tremor, and postural instability. For the clinical diagnosis of PD, the patient must present bradykinesia plus one of the other three signs. Along with these motor signs, some non-motor symptoms are often present, amongst them anxiety, depression, dementia, sleeping disturbances, intestinal problems or hallucinations 2.
PD can be due to both genetic and environmental risk factors. 10-15% of the cases are described as familial PD with a clear genetic origin (mutations in SNCA, LRRK2 or Parkin genes are the main cause), the remaining cases are considered ‘sporadic’ or ‘idiopathic PD’ and are due to a possible combination of multiple genetic (risk polymorphisms) and environmental risk factors (toxins, exposure to pesticides, side effects of drugs, brain lesions, etc.)3-5.
In my experience, researching PD is something that I find challenging, but also motivational and rewarding. Every 11th of April (James Parkinson’s birthday), the regional and national associations of PD patients and their relatives have a day of celebration. They obviously do not celebrate having the disease, but celebrate being together in this battle and never giving up. This day they put aside the pain and the struggling, and celebrate that they are alive by gathering together, laughing, eating, and dancing.
When I was doing my PhD dissertation, I was lucky to be invited to this celebration as part of a group of scientists working on PD. Our group study the molecular genetics of PD, amongst other disorders, and my thesis was focused on studying genetic risk variants in sporadic patients. I will never forget how nervous I was, having to deliver a very brief talk, explaining the genetic component of PD and our current projects at the time. Some years later, though they may not remember me, I still clearly remember the smiling faces in the audience and the cheering and nice words that were said after I finished. Perhaps they did not grasp the most technical concepts, but for them, the mere fact of knowing that there were people researching their disease, working on understanding the mechanisms, and fighting to find a cure, was more than enough to garner many thanks and smiles.
Sadly, there is not yet a cure for PD, but medications, surgery, and physical treatment can provide relief to patients and improve their symptoms. The most common treatments (e.g. levodopa, dopamine agonists, MAO-B inhibitors) all restore the dopamine levels in the brain 6. Levodopa is usually the most successful treatment but the side effects, appearance of dyskinesia (involuntary movement) and fluctuations in the effectiveness can be an issue with long term use. Some patients can be candidates for a very successful surgery treatment called Deep Brain Stimulation (DBS) which involves the implantation of a neurostimulator, usually in the top chest area, and a set of electrodes in specific parts of the brain. The electrical pulses stop the over excitation in the brain and the reduction of motor symptoms is astonishing. Follow the links below to check out some videos of the effects.
Despite the treatments, these people can struggle daily due to the difficulty of finding the right drug combinations, the on and off phases of the medication, or the issues of carrying an internal battery to control the electrode pulses in their brain – and this is not even mentioning the possible non-motor symptoms of the disease. After spending a whole day with them I felt overwhelmed by their energy and good sense of humour and definitely saw things from a different perspective.
Finally, I just want to say that getting the chance to meet real people who have the disorder can be so important for us scientists. It helps to remind us why we dedicate so much of our lives researching a disorder. It is why during the hardest moments of failed experiments, struggling with new techniques, and so many extra hours of work, we can keep on going and will not give up. We do it so that we can see patients smile and keep up their hopes that we will one day find a cure for a disease as debilitating as PD.
Dr Niels Haan is a postdoctoral researcher based at the NMHRI, Cardiff University. He has previously written an article about his research for us, which you can read here.
This post is dedicated to the memory of Dick van der Lee (1962-2018). Take it away, Dick.
Ask any savvy medical researcher why they do what they do, and nine out of ten times the answer is “to help humanity” or some similarly grandiose statement. In reality, this is of course a far more complicated question, and this is different for everyone. The real reason may be as prosaic as “it pays the bills”. If you will indulge me, let me tell you my very personal story about why I do what I do.
My father is the bass player in a blues band, in which he has played since his school days. Since as long as I can remember, they have had the same lead guitarist, Dick van der Lee. Highly intelligent, well read, and a superb guitar player. Growing up, I guess I always realised Dick was a bit different. He never worked, for starters. As I grew older, I learned why. Dick was schizophrenic.
Schizophrenia presents differently in every patient. Many are able to lead fairly normal lives, and have jobs. This is not the place to go into detail, but suffice to say, Dick was badly affected by his schizophrenia. Medication helped keep things under control, but he wasn’t able to work. His music was everything to him, and every last spare penny was spent on guitars, pedals and other accessories.
As the time came to decide what I was going to study at university, I know it was going to be something medically related. As for many other researchers, attacking and dismantling a complex problem appealed to me, so I fairly quickly decided on a career in research. The combination of realising that we don’t really know anything about the brain yet, the excellent neuroscience teaching during my undergrad, and my personal experiences with Dick and others, made me determined to do neuroscience research.
The vagaries of academia being what they are, though I was able to work in disease relevant research most of the time, I had not worked on schizophrenia. For the last year or two, this has changed, and I am now working on the effects of genetic risk factors for the disease. You could say I’ve reached my goal.
Especially in complex, yet common, diseases such as schizophrenia, where we’ve barely scratched the surface of what’s going on, research sometimes seems like a thankless task. Without trying to sound grandiose, I think I speak for many of us in saying that our personal experiences with these diseases, in family, friends, or indeed ourselves, help us to keep going. To keep chipping away at that surface slowly, in the hope of actually one day understanding, and yes, curing these diseases.
A few weeks ago, Dick passed away. Although he has now finally reached shelter from that never-ending storm in his head, this put things into perspective again. I firmly believe that, had Dick not been cursed through his genetics or development, he could have gone far with his music. This is why I do what I do. It is for Dick. It is for my other friends who have suffered with depression or anxiety, who will remain anonymous. It is for all those people suffering, often in silence, from psychiatric conditions for which we say we have ‘treatments’, which are really nothing better than sticking plasters. It is for them why I do what I do.
This reflection article was written by Chantal about her experiences of epilepsy and the treatments she has undergone. Chantal is happy to be contacted by our readers, to do so please use our Contact Us form and we will pass on your message.
The Story I Tell at Parties
By Chantal Mynda Müller-Cohn
At sixteen I stood in the kitchen, waiting to leave with my dad in order to go to the DMV to pick up my license. Finally, I’d be able to leave when I wanted and go where I pleased. Minutes before leaving, a mysterious but common wave, which I can still only explain as uncomfortable, rushed through my body. My father placed a banana in my hand, thinking it was low blood sugar. Next thing I remember, two uniformed men were hovering above me. One sat on my right holding my arm to check my pulse while the other on my left asked me for my name, age, the year and who the president was. Completely confused, I realized I was lying on a skinny mattress in what looked like a tiny room holding medical equipment. I could hear sirens and felt the familiar feeling of speeding in a car down the highway. The man firing questions at me informed me that I had had a seizure and everything was going to be okay. In my lethargic state I had no idea what he meant by seizure. He recognized my perplexed facial expression and told me we would be at the hospital soon and my parents were meeting us there. Safe to say that was not the day I went to pick up my driver’s license.
High school felt like a never ending uphill battle. I spent most of it testing different anti-seizure medications, trying to find one less likely to make me pass out in class or make my reaction time for volleyball slower.
After graduation, I enrolled at Whittier College. One day, I had a seizure in my dorm room and woke up to a group of girls crowding my door as once again paramedics asked: “What year is it?” and “Who is the president?”
School became increasingly difficult. I had trouble staying awake during class, couldn’t finish homework without falling asleep and often had to leave or miss class because I had had an uncomfortable aura, like the one I experienced before my seizure on the way to the DMV.
Not all auras lead to grand mal seizures, but they still make normal activities difficult, and stressing my body with low sleep and lots of caffeine can make seizures more likely. These circumstances came back to bite me when I tried to fly to France one summer. We were in the air when I had an aura, and just as I mischievously decided to use the threat of a seizure to scare the annoying people sitting next to me, I followed through on the threat! I remember reaching down for my medication and waking up on the ground in Arizona after the plane made an emergency landing.
As you can imagine, collegiate stressors (low sleep, high caffeine, etc) weren’t ideal. After three semesters of struggling with poor grades, I left school and came home to find another solution. After having little luck in southern California we heard about Dr. Orrin Devinsky, an epileptologist at New York University, who wrote one of the first books for families dealing with epilepsy.
I was a little taken aback when I met Dr. Devinsky. He told me there was a way I could be free of epilepsy, that I could drive and study, play volleyball without risking another seizure, and shed the fear of forcing a commercial plane to land. The answer, he said, was brain surgery, to remove brain tissue originating the seizures. The prospect of having total control over my body again sounded great, but as the daughter of two scientists, I decided to research the possible outcomes of the surgery. I do not recommend watching YouTube videos of brain surgery before undergoing it. I was terrified and for the first time I found myself crying from the fear.
The first time I began testing to see if I was a candidate for surgery I spent two weeks at the UCSD hospital to find out where my seizures were manifesting in my brain. We needed to observe a seizure in action. Sometimes you think being brought food in bed and binge watching netflix sounds like a nice idea, but after lying there, unable to move, videotaped 24/7 and having electrodes glued to your head, you realize being able to make your own food is pretty great. Two weeks went by but I had no seizure to show for it and therefore no data to help find the seizure locus.
A couple months later I tried again at NYU under the supervision of Dr. Devinsky. There I immediately told them I wanted to be off medication, I was not going to sleep or eat, and drinking was going to be at a minimum to push my body towards a seizure. By the end of the week I had a fantastic grand-mal seizurewith loss of consciousness and violent muscle contractions. Once the seizure took place and all the physicians were happy with the data, we moved on to other tests. Among these, I found the WADA test fascinating–you are conscious while they put one side of your brain to sleep and you partially lose the ability to speak! After this test showed that my speech would not be impaired by the loss of the epileptic locus, we scheduled the surgery.
The surgery took eight hours and when I came out all I really remember is seeing my parents and having the biggest headache of my life. Again I was confined to a bed but this time I was welcomed by surrealist hallucinations from the wonderful medications I was given for the pain. I remember a Picasso-style head coming out of my knee, a fat blue bird which belonged in a Disney movie flying in and sitting on my surgeon’s shoulder, and someone walking into the room and placing a vase into a painting. Most of the hallucinations were odd enough to make me suspicious, so I asked my mom to confirm these things weren’t happening. Dr. Devinsky told me the surgery was a success and showed me with his pinky nail how tiny the pieces (the whole right hippocampus, right amygdala and a piece of the right temporal lobe) they removed were. The next day Dr. Devinsky brought the amazing pictures they made for me–I could see my open skull and the pieces they removed laid out on a table.
After multiple days in the ICU they let me go and about a week after the surgery I was able to take a shower. Because I was so weak I had to have my mother stand in the shower with me to wash my hair while I sat in a chair for a few days. Next I vomited all over the bed because I tapered off the steroids too quickly.
Finally the day came to fly back home to San Diego and I was happy and ready. While I wasn’t afraid of making the plane land, my mom was freaked out and had both of us take Xanax and do calming exercises before boarding. To our luck, I looked bad enough to be taken past all the lines at the airport and on the plane I was given as many pillows and covers as I wanted. So far, Dr. Devinsky had made good on his promises. I was excited to be home and out of the New York stink.
We landed safely, but upon seeing my dog, something felt off. Driving home something felt odd and my room didn’t seem like my own. I was in constant fear in my room and forced my mom to sleep on the floor in my room each night. I couldn’t sleep, two days later I had a terrifying psychotic break and believed aliens took my brain and I was in the wrong body. My parents rushed me to the emergency room as I repeated that we were little toys in a child’s game. The doctors there gave me antipsychotics and while they did not work perfectly, my mind slowed and I was able to sleep again.
A month later, I joined a brain rehab program where I learned to walk without requiring to focus on my balance, retrained my memory with games and boosted my confidence. It would be several months before I knew whether the surgery had been successful, but I was eager to get back to school and move on with my life. Unfortunately, I wasn’t ready. It was naïve to expect greatness from myself just a few months after brain surgery. Instead, I bombed my classes and felt utterly defeated. I withdrew from school and decided to move to Germany to live with my grandparents and to work on my German. I took multiple German classes and began teaching and tutoring English at a nearby high school. After two years, I returned to San Diego and re-enrolled at Mira Costa community college and this time my grades were better than I had ever imagined. In 2014, I was accepted to UC Davis and graduated in March 2017.
While I have been seizure free for 7 years I do think about it at least once a day, at 9 pm when I take mylamotrigine. Before the surgery I was on 600 milligrams of lamotrigine and now I am only on 150 milligrams. The surgery is such a success and has completely changed my life for the better. It allows me to taper off completely if I so choose. I began tapering every three months starting last year. Once I got to 150 mg, Dr. Devinsky and another epileptologist said I should really think about staying on the medication, so I stopped tapering off due to fear. You don’t really know the risk of having another seizure until you have one, even after the surgery.
I still watch how much coffee I drink. I never drink energy drinks and am known to order Shirley temples at the bar. I will probably never go to a music festival because of the flashing lights (even though that has never been a trigger) and I still get scared if I don’t take my medicine before midnight (Cinderella syndrome ;P). Although I am considered ‘cured’, no one really knows and in the end it’s all a gamble. I don’t think I will ever feel completely comfortable with the idea of not taking an anti-seizure medication. Recently, I was told that every time I meet someone I immediately open up with epilepsy and brain surgery. It’s because having a disorder like epilepsy can take over and reroute your life. I am 27 years old, have just now graduated college, and epilepsy and brain surgery are the only things I feel I can talk about to make people forget my age and limited accomplishments.
The biggest wish I have is for all physicians to be fully informed about epilepsy and how common it is. At 12 years old, if my physician paid better attention and maybe knew more about the disorder, my seizure disorder would have been caught earlier and I could have began anti-seizure medication earlier. With fewer simple partial seizures my chances of growing out of epilepsy could have been higher.
To the researchers, surgeons and neurologists that allowed me to have a successful surgery, I am so grateful and amazed by the techniques and findings you make! While in Davis, I worked in a memory lab on campus where I both participated in studies about the hippocampus and served as a research assistant. I have now moved back to my home town of San Diego and started a short 6-week medical assistant course in order to see what the medical field is like on the other side. If I like it, I hope to go to grad school for a career in the medical field. Having a medical professional that has experienced the patient side and gone through your experiences is so important but lacking in most situations. I wish I had been able to talk to someone like this before the surgery so I could ask questions or they could tell me things I’d never thought of. I’d like to make my way to working in neurology because I would like to be the one to make someone feel safe and understood, just as the nurse in the emergency room did for me.
This reflection article was written by Chantal about her experiences of epilepsy and the treatments she has undergone. Chantal is happy to be contacted by our readers, to do so please use our Contact Usform and we will pass on your message.
This is not our usual type of Brain Domain article, but personal stories are important reminders of why neuroscience research is so crucial. Here are some touching thoughts from a friend of someone with Dementia.
Dementia: Please no!
By Andy Stickland
As I look upon my frail friend Bob, lying there in his chair, blanket all wrapped around him as the nurse says “he feels the cold more these days”, I realise I have never been in his room before, despite my visits over the years. I inquired about his routine to another nurse and she said “Robert does not sit in the front room too much these days and generally comes down just for meals.” The last time Bob saw me, although he wouldn’t remember this, he was happily sitting downstairs with others, displaying his usual smile and lighting up the room, actively enjoying the music playing in the background.
Bob has not known who I am, or anyone for that matter, for all the years that I have (too infrequently) called in at his Care Home, set amidst the Cornish Countryside in the Looe valley. Although not as aware or as attentive, compared to my last visit, Bob did seem ‘happy’, to coin a somewhat overused and oversimplified term (yet, this is the only way I have been able to express the situation to others and myself). He may seem happy in his world, whatever happy is, but it’s those who knew him, liked him, loved him, that suffer: from the daughter who he knows no more, to his former colleagues who used to call on the telephone, when he lived in town. Bob did not know them, and so had little he could say, so they stopped calling. Memories are what make us, are they not.
We are often reminded of the value of face-to-face communication. Dear old Bob is nearly 90 years old, and uses a lot of non-verbal communication. However, over recent years, I normally have no idea what on earth he is trying to communicate. His fingers move around while he explains in depth a concept that seems so clear to him but which I struggle to understand. I play along in a desire to not distress him, saying “yes” or “oh I see”. Some sentences click into place and I strain to find some meaning in the riddles Bob speaks, that seem to make sense to him. I remember the gist of some of what he says. Out of the frail man in front of me comes the lovely soothing voice that I first knew. I met Bob in the 80s, when I was a young trainee farmer, approaching 21. He was then in his 50’s (as I am now!), and was the Estate Manager. Today, the voice, nearly as powerful, and the eyes, nearly as bright and welcoming, relay such statements: “some people are loved a lot by family but too much sometimes” – Bob smiles as he speaks – “as they are not always nice”, and “our parents sometimes warn us about some people that we may go here or there with but are not really good for us”, and “we shall grow old together, some mates (chaps) are good some not so good” – another grin – “and best not to get too close to those who are not good for us!”.
I often tell Bob of what a great blessing he was to many people, and tell him of things he did, and he responds with “Oh did I”? I do not say, “Oh, do you not remember?” as I know he does not, and I do not want to worry him. What pain he may feel in being told things of which he has no recollection, by people who he no longer knows? The man of intellect, of reasoning, and with memories, is all gone. Does Bob know of the present distress of those who knew him and loved him? Blissfully, it seems not, as all his memories are gone. Five years ago he at least had his long-term memory, but not today.
I dare to say, why then, what is the point? Some are not ‘happy’ like Bob, but instead fearful, angry and confused, with their loved ones saying “this is not what they were like”, despairing at the stranger in front of them. Oh what pain beholds a husband, a wife, a father, a mother, a sibling, or a dear friend, who even if they are ‘happy’ does not know who you are to them, or who they used to be.
I gaze around the room and see a picture of Bob standing in a field overlooking Lee Bay. This is the beach on the Lee Abbey estate, in North Devon, at end of Valley of Rocks near Lynton, and he, as Estate Manager, had come to see how the haymaking was coming on. The old Massey (not so old then though) pulling a trailer laden with bales was the one I think I used a couple of years later for scraping the yard after I had milked the cows. So sad that he does not now have any memories at all of these happy days. Many of us do and we remember the giant of a man with a big heart and lovely smile who blessed so many of us along our journeys in life. I take his hand and say a short prayer of thanks to a higher power.
I do so, so hope, that the brain-power of some gifted souls (maybe even my own flesh and blood) can come up with a cure to stop this whole horrid state of affairs. We have the memories but sadly they do not.
I go to leave and I hear the words “toodle ooh”, the very words he so often uses when one leaves, said in his usual confident and caring way, and I take some comfort.
Of course, the experience of dementia is not the same for everyone, or every family. Click here to read a daughter’s personal account of her father’s dementia , written with honesty, charm and a welcome pinch of humour.
What is dementia, and how can you get help? Click here to find out more.