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Cathy's story

Cathy describes problems with cognitive symptoms and sensory sensivitity. Like many people she has had mixed messages from clinicians about the diagnosis including framing her symptoms as ‘unexplained’, rather than being positively identifiable as related to a functional disorder, and her story explains how she is coming to terms with this situation.

It is a work in progress for me to make sense of the last ten months.

I have had unexplained neurological symptoms, which have been: slower cognitive processing, slower emotional processing and speech issues. The cognitive symptoms initially began with me noticing I was having difficulty marking assignments and synthesising information.  I then noticed that my earlier written communication had been off point as well, and that was unusual. It was taking a lot longer to complete more complicated tasks. I was also finding it difficult and tiring to be in larger groups, which wasn’t normally the case. After months of trying to push on through, I reluctantly informed my manager something wasn’t right.  After taking sick leave and having various medical appointments, I had to accept that I was no longer capable of fulfilling my role.

My ability to process my emotions was also different.  In the last ten months there have been instances where my emotional-behavioural responses to a typical situation, have been out of step. There were a number of occasions where I had out-of-character incidents, some of which definitely sat in the ‘odd’ camp. I interpreted these as odd ‘events’, not as a ‘continuous state of odd existence’.  I learnt that noise was one factor that could negatively impact on my processing abilities.  At times, I had to put my hands to my eyes to shut out the ‘data’ around me. I knew I was processing my feelings differently. I could clearly articulate these events and how I was feeling to friends and family – so my reasoning seemed intact; I wasn’t ashamed, more perplexed and curious, at what was happening.

During this time, my speech could also deteriorate. I was blending words, transposing or replacing words with other words, stuttering, and it was becoming increasingly exhausting and frustrating to express myself, verbally. The phone has been a real challenge at times. In the privacy of my home, my speech often caused moments of hilarity for my teenage daughter – and for me.  

I began to re-organise my life’s activities: simplifying my wardrobe as making clothing choices was unnecessary mental energy, reducing social activities, lessening social telephone calls, visiting only quiet cafes and not driving in busy traffic. Quiet time was more important. I was hopeful that if I could manage how much data processing my brain could manage, I would be less tired and my head would be less sore. I was making pragmatic decisions to assist daily functioning; after all I was still a mum.

At 53 years old, I had never experienced these symptoms before. I ran through a pretty typical layperson’s list: Was I depressed? Was I anxious? Was I stressed? Perhaps I was developing some form of psychiatric illness – schizophrenia? My family has a medical bent so understandably, we were trying to make sense of it all. I thought my reasoning, while slower, was still pretty good, most of the time.  Was I not seeing something in me that others were seeing? I asked those who knew me well: “Do I seem in a state of depression, anxiety, high stress, mania or delusional to you?” While loved ones noted some of the self-reported changes mentioned above, according to them, I was still pretty lucid.

I describe the sensation I often experience as feeling like I am sometimes in a funnel, sort of being gently pulled under into the water, not drowning or unhappy, but submerged, existing in another sort of space. To communicate with people on dry land is more of an effort. The deeper under the water I get, the more difficult it is to clearly relate to those around me. And yes, I do know how weird or emotionally unstuck that sounds. What has been more upsetting is trying to make sense of the fact that there are times when I am not under the water at all, and I have a “20/20” clarity, and I think, ‘That was a pretty bizarre time; great, it’s behind me now….’ but then it returns, or at least to date.

So, to the family doctor we go. A referral was made to Neurology and an MRI scan was undertaken. The MRI was clear, noting only minor abnormalities. Counselling was recommended.  That medical evaluation wasn’t well received. I guess I was hoping to understand the physiology of what was going on with my body because I had engaged the services of a neurologist.  A second referral was made to Neurology, and as a result of a telephone consult, a possible diagnosis of frontal lobe dementia was offered. Given the symptom cluster, that was frightening, but understandable.  A PET scan was undertaken and four months later I was told the PET scan was clear. That was long-awaited great news, but I remained no clearer as to what was going on physiologically.

The follow up neurological consult suggested it was more likely to be an issue in ‘software’. Unfortunately, I don’t know a lot about computers so the analogy was lost on me. Reference was also made to the value of seeing a clinical psychologist. I found I could better understand my family doctor’s reasoning, perhaps helped by the fact that we have known each other longer than for 20 minutes. He referred specifically to Functional Neurological Disorder and provided me with an academic article on the topic.  He validated my symptoms and acknowledged that doctors sometimes just don’t know the answer but the symptoms are real. I accept that. I am concerned, though, in the absence of not knowing the answer, the fallback position may be a psychological diagnosis – whether that is stated directly, or implied. The harm of that sort of encounter can be processed in another forum. My doctor was supportive of me exploring other approaches to understand and address the physiological changes I was experiencing.

Ten months on, with dementia recently taken off the table but with no known cause for these symptoms, how am I making sense of my situation? Well, it is a work in progress, that’s for sure.

My first priority is to try not to doubt my own experience or think of my symptoms as being in my head, made up or purely stress. The best analogy I can think of, that relates to nerve malfunction causing my brain not to work as it should, is around the light on my back porch:

The light on the back porch used to work perfectly adequately. Now, though, this light works sometimes and at other times it doesn’t. Sometimes it just flickers. I don’t know why it intermittently doesn’t work, or why it flickers. The light isn’t broken, but it isn’t working properly, either. My other lights work fine. What I have to remember is that I am not imagining that the back porch light isn’t functioning as it should, and I am not imagining that aspects of my brain aren’t functioning as they should, either.

Second and subsequent priorities include: Exploring a different approach to illness-health-wellness.  Traditional Chinese Medicine and acupuncture is interesting to me; a new frame for understanding the interconnectedness of various body organs and emotions, including the nervous system.  

Despite being informed that the blood pressure medication I went on 10 months ago shouldn’t cause my symptoms, which may very well be true, I have asked to try a different medication.

I am also going to make the most of each day, learning what works for me and what doesn’t. I need to do things that feed my soul. I am going to try and remember, as maddening as these symptoms are, and as mad as they clearly sound, and as mad as they be framed; my insights still seem to be okay.

And I will support research and read widely to try and understand the science behind unexplained neurological symptoms. I will also listen carefully to the stories of people, noting how many have been told, or treated like, their unexplained symptoms are ‘just psychological’.

I am also going to remember history, the wondering womb-hysteria narrative. As with other issues, sometimes terminology has been modernized, but the underlying ideology and practice has not been quite put to bed. It is important to distinguish between folk tales and scientific evidence.

Finally, a shout out to my dear, loving and patient friends and family. Thank you so much for your support; also, a shout out to the medical experts who wish to research the physiological aspects of unexplained neurological symptoms. It’s appreciated.