Until recently I had never heard the term Parkinson's crisis or acute akinesia as it is known in the medical literature. Now this is strange since by my reckoning we have had at least two such experiences, but I never knew the phenomenon had a title or was recognized as a normal but frightening development in many patients with an advanced case of the disease. It was a nurse at the little hospital where my husband spent a miserable week in November who first mentioned it. She simply asked if Michael had ever experienced such an attack to which I responded no, having no idea what she was talking about. It seems to me that most days in the life of a Parkinson's patient present crises that must be faced, but they become so commonplace at this stage that one becomes rather inured to such things, so inured that I am often afraid that I will not know when to respond to a true emergency anymore.
A Parkinson's crisis or acute akinesia is an attack of severe Parkinson's symptoms that does not respond to the usual drug therapy and usually lasts a few days or weeks. It is more severe than the usual daily fluctuations in drug response experienced by a Parkinson's patient. Interestingly, an attack can be triggered by a surgical procedure (i.e hospitalization) or "gastric stasis" which, from what I can ascertain, is a slowing down or stoppage in the digestive processes, characterized by nausea and constipation. Acute akinesia is characterized by extreme rigidity, lack of response to stimuli, overwhelming drowsiness; in fact it is described on one medical website as a "much-feared complication of Parkinson's disease" and in another journal, "a life-threatening complication of Parkinson's disease (PD). It is unlike the "wearing-off" phenomenon that occurs when dopaminergic drug levels decline and responds to dopaminergic rescue drugs. Acute akinesia may be a clinical entity distinct from the previously described PD motor fluctuations" (NEUROLOGY 2005;64: 1162-1169).
Michael's neurologist has never discussed this phenomenon with me despite the fact that after a mild heart attack in February 2007, I believe Michael had such an attack. Michael was hospitalized for six days to undergo an angiogram, angioplasty and the insertion of two coronary stents. He was forced to be there that long because he entered the hospital on a Friday morning and, not being deemed an emergency, was forced to wait until Tuesday before the overworked surgeon could see him. What bad planning on our part. Word to the wise: If you have to have a heart attack, you might want to have it early in the week or else plan to have a really bad one if you want to be treated immediately near the weekend.
So Michael had lots of time, in fact four days before his procedure, to sink into the abyss of extreme psychosis that I have since learned is a fairly common problem with advanced patients. The hospital staff seemed unaware of the severity of his predicament. In the emergency ward they had him down as a sufferer of MS until they were duly corrected by me. On the cardiology ward they thought he was suffering from Alzheimer's disease -because of his now extreme psychosis - and alcoholism with a bad case of the DTs because his dyskinesia ( the involuntary movement and shaking Parkinson's patients have to deal with) was by this time also extreme. Apparently nobody ever reads a chart at this hospital.
His psychosis escalated to the point where he became aggressive and hyperactive prompting the hospital staff to sedate him heavily with a drug called Haldol (which I have learned should never be given to Parkinson's patients as it can exacerbate their symptoms permanently) and bind him to his bed, flat on his back, essentially imprisoning the poor man. When we visited him on the Sunday night, day three of his incarceration, he was certain of imminent death and was hallucinating wildly. He was beyond terrified and sad. I visited him with two of our kids and they were horrified at what they saw. I quickly demanded answers from the staff about his condition and they were unperturbed, stating this was a normal state for many presurgical patients. Right. I left the hospital feeling a rare sense of panic and barely slept that night.
Michael did calm down enough to have the minor cardiac surgery and was finally sent home on the Thursday. I was worried how we would cope because his delusional behaviour was worse than I had ever seen it. But on returning home Michael sank into an even more worrying condition. He became what I described as catatonic. He didn't respond to his medications (one of which, by the way, had been suddenly withdrawn by the neurologist in the hospital in an attempt to control the psychosis - it didn't); he was stiff, in pain and delirious. But it was the weekend again and therefore no medical professionals were available on the phone, and I was determined he would not go back to hospital after the nightmare of the previous week. In an act of desperation I gave him a dose of a medication that the doctor had withdrawn completely in the hospital because, to my untutored but logical mind, perhaps the sudden withdrawal of that drug was why he was in this state. Miracle of miracles! Within half an hour of administering that drug, amantadine, Michael was up and walking around as if nothing had happened. On researching this drug I learned two things: Abrupt withdrawal can cause Neuroleptic Malignant Syndrome (NMS) which closely mimics a Parkinson's crisis, and this drug is actually used to treat cases of acute akinesia, so my instincts were good.
On consulting with the doctor after all this drama had passed, he still made no mention of Parkinson's crisis, in fact gave no explanation of the events. I was left in the dark but grateful that Michael had made a comeback.
Fast forward nearly three years to November 2009 when a long spell of hyperactivity and extreme psychosis land Michael in hospital again, mostly so I can get some much needed sleep. He started to spiral even more out of control in the hospital, for which I was somewhat grateful because at least then they would see what I had had to deal with for weeks. And it seemed they could not deal with him, calling me frequently each day to "try and calm him".
The only physical problem the doctors could come up with, after a multitude of tests, was severe constipation. After the heart attack crisis, I had taken over most aspects of Michael's care but one area I had kept out of was the toilet. I naively thought that Michael would apprise me of any problems in that department. What I didn't realize was that his mental state had deteriorated so severely that he no longer could remember what had happened five minutes before let alone whether he had had a bowel movement that day or even that century. It turned out he had been constipated for probably weeks and that could have been the explanation for the descent into the psychosis.
Did you know that the bowel is known as the second brain? Apparently good colon health means good mental health, for all of us not just Parkinson's sufferers. It makes me think of that song, "The arm bone is connected to the shoulder bone.." or something to that effect. In Michael's case the colon bone was firmly attached to the brain bone. While he was in hospital the staff had promised they would address the problem but it was apparent when I finally got the poor man home that absolutely nothing had been done on that front and he was probably worse than ever, prompting all kinds of intervention on my part that I never considered a possibility when reciting my wedding vows.
So Michael returned home and once again I saw him plummet into another of these catatonic states, this time far worse than the first. In the morning he was so rigid that moving him at all elicited screams of pain from him. His medication was taking hours to have effect if at all. He was not only speaking in his usual slurred fashion but what words were coming out were often garbled and mixed up making me think he had had a stroke. He was barely responsive, barely awake. I was sure he was dying and I prepared the kids. None of the medical professionals working with us at home contradicted my assessment.
I furiously searched for any information on what he was experiencing and finally came across the description of what I was now certain he was suffering from: acute akinesia /Parkinson's crisis or it's more frightening cousin Neuroleptic Malignant syndrome which is nearly identical in its manifestation except for a few more nasty symptoms such a hyperthermia. NMS can be a rare but horrible side effect of anti-psychotic medications such as the Clozaril Michael had been prescribed to treat the psychosis, or when a drug like amantadine, as previously mentioned, is suddenly withdrawn. So it could have been either phenomenon given Michael's history: constipation, hospitalization and neuroleptic drugs.
But still no enlightenment from the doctors. It will be up to me to bring it up next time we meet even though I have already had a discussion with the visiting family doctor who knew nothing of these phenomena but promised to consult with the neurologist. What alarms me the most is that I now know this condition is not only frightening but also potentially fatal. Now I am even more committed to keeping him out of institutions as long as I can and to monitor the bowel activity closely since both factors are the main causes of this horrible end-stage complication.
