This week, I am visiting the home of someone I care about. He has Parkinson’s disease and is in a bad way. I’ve only ever cared for a dozen people with advanced Parkinson’s – several of them in palliative care in the terminal phase of life. It’s tough. Patients with severe Parkinson’s need medication about six times a day. Not getting your dose on time or needing a different dose can have severe consequences. Grievously, Parkinson’s seems to particularly affect people who are punctual, moralistic, cautious and fastidious. My friend had none of those traits. He got the bastard anyway. Perhaps he’s like the lifelong non-smokers who get lung cancer.
Recently, my friend had a fall and was unable to get up. It was as if he was frozen in place. An ambulance took him to the hospital where he stayed for weeks while doctors in the neurological ward tried to optimise his medications. In this disease of severe unbalance, they worked to try to find a balance for him between the benefits of the medicine and its unwanted effects. In his case, this means finding a balance between being able to move and having psychotic episodes.
Anyone who has read Oliver Sacks’ impressive book, Awakenings or seen the Robin Williams movie will remember the miracle of Levodopa (or L-Dopa), the medication that keeps people with Parkinson’s disease moving. L-Dopa is an amino acid (a kind of protein) that the brain uses to produce neurotransmitters – the chemical substance of thought.
In Sacks’ book, patients who had been moribund for decades were awoken by L-Dopa, hence the book’s name. Dr Sacks eloquently showed the wonder of it, as they came to life -- expressing their personalities and enjoying their bodies in a burst of potential energy like fruit blossoms sprouting on stark, thin branches.
However, the limitations of the medication form a dark subtext that may have become, for my friend, a full-blown tragedy. Dr Sacks’ patients froze up again or developed horrible jerking movements. We now know that the medication can cause severe problems, in particular the psychosis and paranoia some Parkinson’s patients develop. While we have become better at using L-Dopa and can buy people years of better quality life, we can no longer tell, over years, what terrible effects are those of the disease and what is an unwanted effect of the medicine.
Before the fall, my friend had some trouble walking. He also had odd ideas such as an obsessive notion that his daughter, an accountant, was cheating him. This was hard on his daughter. He would express his distress about this delusion to anyone who would listen. He even called the police once.
In a doctor’s hindsight, while my friend’s delusion was a cause of great sorrow to his daughter, it did make for a refreshing change from the more common Parkinson’s obsession: that one’s spouse is having an affair. I remember well a patient I cared for who was convinced that her husband was having affairs. She would describe it all in lurid, hateful detail. Her husband remained dedicated to her. He impressed me. His patience showed me an important dimension of love.
And this week, I am reminded of that lesson again by watching my friend’s family and friends. The scale of care he needs has suddenly grown in intensity and volume. His family rearranged the furniture. Some have rearranged their lives. They tried to source equipment to help him remain mobile, to help him remain clean and dignified. A dozen times a day they lift him -- in a difficult dance, encouraging his stiffened limbs to shuffle around – into the wheelchair, onto the recliner, onto the toilet, onto his bed.
Sitting with him, I politely ignore the struggle it takes him to eat. When he reaches for his cup, the agility and precision with which I can pick it up and hand it to him is a stark contrast. I find myself astonished by my grace. Confidingly, he whispers that the television has a camera in it. He is trying not to move his lips (because they are watching us) in a face already made wooden by disease. I find it difficult to understand him.
My friend’s delusions are real experiences to him – in his new reality in the hospital, he was being captured and taken away, tortured and traumatised, every night. When he whispered to his wife about one of these encounters and she explained that this was a symptom of the disease and the medication, he replied, ‘Yes, the doctor told me that.’
Eventually, his family has had no choice but to partially, gently accept some of his alternate reality. His hallucinations have improved since he came home. On a good day now he sees people and animals that aren’t there and is not afraid of them. The birds he sees in the house are different each day. To me they have cultural meaning. The raven travels alongside on the journey, keeping you safe, I tell him. The white bird is for peace and reassurance. I believe the stories I tell him.
He doesn’t know it, but he is a lucky man. He is at home, surrounded by the familiar life he helped to build. He even gets hugs and strokes (and help getting dressed and combing his hair) from that thieving accountant daughter of his. This is love.
Thumbnail photo of a man not yet falling by UK Nic