Corticobasal degeneration

Corticobasal degeneration (CBD) enters Moth and Ray’s story as a diagnosis that cannot be confirmed with certainty, yet immediately reshapes their sense of time, work, home and life together. The consultant warns of a progressive disease with no treatment to halt it; on the coast path, Moth’s symptoms sometimes ease so markedly that the diagnosis seems almost impossible to reconcile with what Ray can see. That contrast is central to the account: walking becomes a demanding way to live with uncertainty, not proof that the disease has disappeared.

Symptoms and diagnosis

The search for an explanation had already lasted six years. Moth’s debilitating shoulder and arm pain was followed by a tremor in his hand. Doctors first thought he had Parkinson’s disease, then, when that was ruled out, considered nerve damage. The consultant’s room resembles the other clinical rooms they have visited, a white, square space overlooking a car park. But this doctor sits beside Moth rather than behind a desk, touches his arm and asks how he is. Ray registers the gesture as unfamiliar, a small breach in the impersonal routine of waiting rooms.

The consultant says he believes Moth has corticobasal degeneration, but cannot be absolutely certain: there is no test, and the diagnosis will only be known for certain at post-mortem. The uncertainty does not soften the prognosis. Ray understands the disease as one that may progressively damage Moth’s body and mind, bring confusion and dementia, and eventually leave him unable to swallow, with the risk of choking on his saliva. She struggles to remain composed as the room seems to move beyond her reach. For the couple, the diagnosis is therefore both provisional and devastating: its certainty is limited, but its consequences immediately become part of the future they must imagine.

Prognosis and the life it interrupts

The consultant offers no medicine or therapy that can stop or hold back the disease. Pregabalin may ease pain, but Moth is already taking it; Ray longs for a remedy that could interrupt the destruction, and there is none to collect. The diagnosis arrives alongside the loss of their house and holiday-rental business. Their income has gone, and the practical logic would be to find work and somewhere to rent. Yet Ray fears that Moth may have only a short period of moderately good health before paralysis and death. She does not want to leave him to work while they still have time together, and thinks of the memories she must preserve for a future that may become lonely.

The medical advice is to avoid tiring Moth, walking too far, climbing stairs carelessly, carrying heavy weights or planning too far ahead. That counsel sits uneasily beside their circumstances: they have no home to return to, and the future the diagnosis has made frightening cannot be set aside. In early August, they stand with their rucksacks by the roadside in Taunton and recognize that they are homeless. For Ray, this is not travel with a known place of return; there is no door to go back through. The disease and the loss of housing are distinct crises, but together they make staying close and deciding how to move forward more urgent.

Walking, pain and uncertainty

The walk initially gives Ray reasons to doubt her own decision. On the steep zigzag path through woods above Minehead, the couple stop on a bench to catch their breath and consult Paddy Dillon’s guidebook. As Moth struggles on, Ray fears that the daily strain is making him worse and wonders whether suggesting the walk has accelerated the disease. The consultant’s warning not to tire him returns to her mind. Walking is not presented as an uncomplicated cure or as a medically endorsed plan; it is a choice made under pressure, with the possibility of harm as well as the need to keep going.

Over time, the repeated steps also change how Ray experiences the crisis. The walk becomes less a chance to devise a plan than a near-meditative sequence of effort: one step, then the next. Climbing out of each combe feels like a victory, and each day survived gives a reason to face another. The sea wind, dust and light occupy attention that might otherwise be filled by grief. This rhythm does not resolve the diagnosis. It gives the couple a present-tense structure when the future is frightening and difficult to hold in mind.

There are also moments when movement seems to coincide with a striking change in Moth’s condition. Before Newquay, he tells Ray he feels stronger: he can trust where his foot will land, is dropping things less often, and has less shoulder pain. He says the pain had been severe after he stopped taking Pregabalin, but that he later noticed it easing; he also feels clearer in his head and better able to think. He cannot tell whether the improvement is temporary or whether the symptoms will return when he stops walking. Moth suggests that the walk may be extreme physiotherapy and wonders whether he will have to keep walking all his life. The narrative records his experience without establishing that walking treats or reverses CBD.

A sudden test of strength comes when the rising sea threatens their tent. Moth runs up the beach in his underpants, holding the tent overhead with the airbeds and sleeping bags still inside. He keeps moving as he wades knee-deep through salt water where it runs into a freshwater stream. To Ray, this is difficult to square with the consultant’s account of a one-way decline. Moth’s own description remains more cautious than the spectacle: he does not know whether the improvement can last.

Fluctuation, cold and renewed concern

The better periods do not hold steadily. After Moth stops walking and takes off his rucksack, stiffness returns and neurological pain increases. He sleeps twelve hours a night and struggles to move in the mornings. When the couple revisit the consultant, they explain that his symptoms had almost disappeared while he was walking, then worsened when he was cold. The sequence makes warmth and activity salient in their experience, but it does not settle what the disease will do next.

Cold and damp expose the cost of that uncertainty in ordinary bodily detail. In a rain-soaked tea room, Moth falls asleep with his head on a cushion; his arm twitches rhythmically and his face tightens with pain. Ray sees that the weather is hurting him more than he admits. Without Pregabalin, he feels pain in his shoulder and head and a numbing ache in his leg. After a warmer night, he stretches out of the tent and moves more easily. Ray adds avoiding cold to the growing list of things they are trying to manage, while revisiting the earlier advice to limit exertion. Her response is not confidence that the illness has been defeated, but a determination to keep acting while action still feels possible.

That conviction meets a further, startling reversal near the Golden Cap trig point. Reaching such markers had been a family tradition: when their children were young, Moth would lie flat across a trig point and pretend to fly for a photograph, trying to cheer them through arduous walks. The familiar gesture matters now, CBD or not. In the fog-bound heather, Ray sees that Moth is laughing, clear-faced and no longer visibly hiding pain. From a point when he could not get out of bed, he has become strong and in control of his limbs in just under two weeks. Ray realizes she had not noticed when the drag in his footprints stopped. Moth asks how the stiffness could have receded so quickly, recalling that on the north coast it had taken weeks. The improvement is real in the scene, but it offers no final explanation.

Progression and narrative significance

For a time, the change gives Moth room to think and speak without the diagnosis dominating every moment. He knows CBD has not miraculously disappeared; Ray describes him as being on death row but granted the right to appeal. The image holds both hope and limit: the immediate threat seems to recede, but the underlying illness remains. Their experience is not a simple story of recovery, because neither the diagnosis nor its uncertain course has been overturned.

Later, the signs of decline return. Moth hunches beneath his pack, his muscles receding, as confusion washes over him in waves. Ray identifies this as the beginning of the mental decline associated with CBD. The coast and its changing tide give her a way to register what is happening: the sandcastle quietly falling in water, the parapets becoming a tide-rippled seabed. The image does not turn the disease into a mere metaphor; it accompanies a specific observed change in Moth’s mind and body.

The illness also changes the meaning of planning. As Plymouth approaches, the path has offered a reliable sequence: pack the tent, walk, and know what the next day requires. Beyond it lie ferry crossings, the end of the trail near Polruan and an unknown future. Ray recognizes her own panic when Moth asks why they have never made plans before, since plans always seem to end this way. The question returns the narrative to the tension present from diagnosis onward: the couple must acknowledge a future they cannot control while choosing what can still be done together now.

CBD is thus presented through both its clinical forecast and its uneven lived experience. The diagnosis threatens Moth’s movement, thought and ability to care for himself; pain and stiffness recur, while walking and warmth coincide with periods of greater ease. Ray’s fear, self-doubt and refusal to accept the prognosis as a reason to stop are part of that experience, but they do not erase the later confusion or establish a cure. The path gives the couple a way to inhabit uncertain time, one step at a time, without making uncertainty disappear.