Living with the Knowledge

2023

Fiona always lit up when I visited. In this photograph, her profile against the glazing of her front door reminds me of a saint framed by a halo. At moments like this, when her medication works, it can be hard to imagine how much she struggles.

Fiona was diagnosed with early-onset Parkinson’s disease in her mid forties. At the time, she was a police community support officer leading an active and healthy life. Much of her spare time was spent outdoors. Since her diagnosis just over a decade ago, she has lived with the knowledge that nerve cells deep in her brain are dying. Her body does not behave like it used to and her condition makes her anxious and depressed.

Her husband, Andy, was thrust into the role of carer. He knows that Fiona’s condition will worsen and that she will become increasingly dependant on him. Witnessing her distress also makes him feel anxious and depressed.

A woman frozen mid-step at the threshold between two rooms, head bowed, unable to move — A common symptom of Parkinson's disease is 'freezing', a sudden inability to move. Nobody knows why, but sufferers often freeze at thresholds. Here, Fiona's husband Andy pushes the back of her leg to reengage her motor system. She finds seizing up like this embarrassing and frustrating. On top of that, she gets very anxious anticipating the next episode.

A man bending down at a woman's feet in the hallway doorway, pushing the back of her leg to help restart her movement — A common symptom of Parkinson's disease is 'freezing', a sudden inability to move. Nobody knows why, but sufferers often freeze at thresholds. Here, Fiona's husband Andy pushes the back of her leg to reengage her motor system. She finds seizing up like this embarrassing and frustrating. On top of that, she gets very anxious anticipating the next episode.

Parkinson’s disease results from neuron loss in the substantia nigra, a region of the midbrain that produces the neurotransmitting chemical dopamine. Fewer neurons produce less dopamine and this impedes the brain’s coordination and execution of motor functions. In turn, this affects movement, muscle control, and balance. It also results in changes in cognition, mood, behaviour, and thought. Anxiety and depression are common.

To compensate for her dopamine deficit, Fiona takes medication. For the two to four hours that a dose is active, she does not appear too different from a healthy person. When it suddenly wears off, she is incapacitated. Her complications include slurred speech, narcolepsy-like symptoms, and freezing, an involuntary inability to move, often mid-gait. She is frequently anxious of the next unpleasant experience and, increasingly, she is afraid of fear itself. This weighs on Andy’s mind too.

A man and woman crouched over a disassembled mobility scooter on the kitchen floor, examining how to put it together — Every intervention feels like defeat. After resisting for many years, Fiona eventually acquired a battery powered mobility scooter. It gives her some sense of independence and means she is not always reliant on Andy. Here, they work out how to dismantle and reassemble the new scooter.

A woman seated in the kitchen holding a Manx cat in her arms, with a man sitting beside her — Fiona, Lillie, and Andy in their kitchen. Lillie is a Manx cat, and quite strong. On my visits, she usually greeted me with an amiable headbutt to my lower leg. Her unapologetic liveliness is a buoy to Fiona and Andy.

A woman seated alone at the dining table, chin resting on her hands, surrounded by a wall covered in framed pictures and prints — It is not just Fiona's failing health that distresses her. What upsets her even more is her experience of welfare support, which she has found to be inadequate and antagonistic. In her words, "an unwelcome diagnosis and general bad luck led me into the benefits system, a system we pay into and hope never to have to take from… lots of snakes and no ladders."

A man in the foreground and a woman in the background at the same table, her head in her hand and eyes downcast — It is not just Fiona's failing health that distresses her. What upsets her even more is her experience of welfare support, which she has found to be inadequate and antagonistic. In her words, "an unwelcome diagnosis and general bad luck led me into the benefits system, a system we pay into and hope never to have to take from… lots of snakes and no ladders."

Dealing with the direct physiological and psychological impact of Fiona’s condition has been taxing. But the secondary effects are perhaps even harder to cope with. Although the termination of her employment was recorded as ‘voluntary redundancy’, she says she was forced to resign and made to sign a non-disclosure order. The ordeal left her traumatised.

Unemployed and unwell, Fiona was introduced to the benefits system. In principle, as someone in vulnerable economic circumstance, the government is committed to protecting her financial security. In practice, her experience suggests that the welfare system is systematically biased against those in need. Despite being diagnosed with a progressive neurological condition, Fiona has had to go as far as appearing in court to receive the financial support she is entitled to. Her diagnosis is incontestable and the symptoms of her disease have been known to medical science for more than two centuries. Yet, they have been persistently, and sometimes aggressively, questioned by administrators. She has found the process deeply degrading and painful.

A man standing in a cluttered room wearing a VR headset and holding controllers, arms outstretched, shelves of games and collectibles behind him — Andy is an extremely patient and supportive partner, but his and Fiona's situation is not easy for him either. On a daily basis, he experiences that there is very little institutional and societal understanding of the implications of being a carer. He finds escape in solitary pursuits, like virtual reality gaming.

Fiona and Andy continue to struggle financially. Paradoxically, a realistic part-time position would make Andy ineligible for benefit support, but would pay too little to improve their situation. Employers also seem reluctant to help: in his last role he was refused reduced working hours to be at home more to provide care.

A woman smiling and walking on open rocky ground with two walking sticks, a man bending down to pick something up in the background — A walk near Fiona and Andy's home on a bright day. Before her illness, Fiona was a keen hillwalker. Her walks now are restricted to level ground and getting shorter as her condition deteriorates. She uses walking sticks to aid her balance and is reliant on Andy to assist her.

A man steadying a woman on a rocky outcrop outdoors, both dressed in winter coats, a wide flat landscape behind them — A walk near Fiona and Andy's home on a bright day. Before her illness, Fiona was a keen hillwalker. Her walks now are restricted to level ground and getting shorter as her condition deteriorates. She uses walking sticks to aid her balance and is reliant on Andy to assist her.

A woman standing at the kitchen counter in the foreground, a man seated in the foreground examining a small object, a fridge covered in souvenir magnets visible behind them — Fiona leans on Andy as she moves around their small kitchen. He is checking watches and clocks that have been donated to a local charity shop. He volunteers a few hours a month to do basic repairs and replace batteries before they are returned to the shop to be sold.

A man's hands close up, working on a small watch at the kitchen table, with several watches, a clock, tools, and a mug laid out before him — Fiona leans on Andy as she moves around their small kitchen. He is checking watches and clocks that have been donated to a local charity shop. He volunteers a few hours a month to do basic repairs and replace batteries before they are returned to the shop to be sold.

Fiona has received adequate specialist medical care although this often involves long waiting times and traveling to hospitals far from her home. Thankfully, Andy has been able to drive her: as a neurological patient, relying on public transport would have been very challenging for her. For a while, Fiona had access to a specialist nurse but, being responsible for hundreds of patients, she predictably experienced burnout and eventually resigned. After more than two years of intermittent and then no nursing support, a new nurse was recently appointed. At the time of writing, Fiona was looking forward to meeting her. Despite repeated requests for mental health support, neither Fiona nor Andy have received any.

Fiona and Andy’s support unit is themselves. They revolve around each other like two moons around an invisible planet. The unseen gravity that locks their orbits is affection and devotion. That and the weight of the knowledge of what they have experienced together.

A kitchen worktop with a plastic basket filled with blister packs of medication and, beside it, a stack of transdermal patches in their packaging — Most of the time Andy is on standby to help. Here, he is applying a transdermal patch, using the heat of his palms to make it adhere to Fiona's shoulder. To counter the dopamine deficit in her brain, she uses these patches, which deliver medication through the skin, in addition to tablets (first photo). A major concern is that medication becomes less effective as Parkinson's disease progresses.

A man pressing both palms firmly onto a transdermal patch on a woman's bare shoulder, her head bowed forward — Most of the time Andy is on standby to help. Here, he is applying a transdermal patch, using the heat of his palms to make it adhere to Fiona's shoulder. To counter the dopamine deficit in her brain, she uses these patches, which deliver medication through the skin, in addition to tablets (first photo). A major concern is that medication becomes less effective as Parkinson's disease progresses.

A woman's hands working on a porcelain doll lying face-up on the kitchen table, a small Minnie Mouse bag and sewing materials nearby — Fiona has a collection of porcelain dolls. Sometimes she buys damaged ones online and restores them. She cleans their faces and hair, reattaches their porcelain heads and limbs to their fabric bodies, and mends their clothes. I wonder if this gives her back some sense of control after losing so much of it through her condition? Or does she imagine herself in the doll's place, being made new?

A woman lifting a large restored porcelain doll up towards a shelf in a room lined with books, ornaments, and other dolls — Fiona has a collection of porcelain dolls. Sometimes she buys damaged ones online and restores them. She cleans their faces and hair, reattaches their porcelain heads and limbs to their fabric bodies, and mends their clothes. I wonder if this gives her back some sense of control after losing so much of it through her condition? Or does she imagine herself in the doll's place, being made new?

Despite the trepidation that their experience instills in me, I took many positives from my work with Andy and Fiona. Their commitment to each other is astounding and inspiring. The time that I spent with them was also uplifting in how they embodied authenticity, generosity, and honesty. This does not take away from their (and my) sense that in an affluent country, it is remarkable that they are facing poverty. Not only in terms of their dwindling financial resources, but also in the scarcity of financially viable employment options that take into account caring duties, and in the inadequacy of welfare support and healthcare provision that are structurally and operationally flawed.

Acknowledgements

This work was facilitated by Morecambe Bay Poverty Truth Commission.