Food May be Hazardous to Your Health

Her head was down, lost in a puzzle, her usual way of passing a silent meal. She had decided on an easy meal of beans on toast (an old favourite from her childhood) but had jazzed it up with a fancy salad dressed with fruit and nuts to assuage her guilt over the otherwise canned meal.

He ate in complete silence as always. Sometimes, if he doesn't like the meal and is too polite or just rendered mute by the disease, he will be as quiet as death, not moving, not speaking, not eating. It is what dining with a ghost must be like.

Tonight he was happy with the meal, if not the salad. She had been sure to make the toast fairly soft, knowing he can have difficulty with very chewy food now. The beans were easy for him.

He started to cough. Parkinson's patients can have a great deal of difficulty swallowing as the disease progresses but he has had little trouble, eating ravenously at times and putting on weight in recent months. He has never had trouble swallowing his pills either, often gulping down a handful all at once.

But there is that cough. Nearly every meal makes him cough at least a little. She is so used to it that she barely acknowledges it anymore. She tries not to be annoyed by it because, to her jangled nerves, it sounds like he is forcing it sometimes like a small child vying for attention. But she knows he is not capable of such manipulation.

She lifted her head as the cough seemed to worsen, this time sounding loose and rattly. He rose from his chair to head to the washroom to spit out his mouthful but the cough rendered him too unsteady to go more than two steps. He was going to vomit on the floor, she was sure. Now on high alert, she ran to the kitchen to grab a basin, ordering him harshly to stay where he was. The coughing was now uncontrollable. Mucous was running from his mouth.

She ordered him to get down on his knees because he was buckling and in danger of collapsing. She had to assist him down as he seemed deaf to her instructions.

He was now retching loudly but was still breathing and making sound, both good signs that there was nothing stuck in his airway. He just needed to cough up whatever was stuck in there which she thought must be a small piece of pecan from the salad.

A second later he keeled forward landing with his face in the bowl. To her horror she could see he was unconscious; his eyes were open, tongue lolling out. Assuming the particle of food must now be blocking his airway she grabbed him around his waist - no easy task with an inert body - and summoned her learning from a first aid course taken decades ago. The abdominal thrust, as it is now called, was what she attempted, thrusting up into his diaphragm as well as she could in this very awkward position. Nothing. Again. He spluttered, coughed and spat into the basin which was now bloody from a gash on the bridge of his nose from falling flat on his face. All that appeared in the bowl besides lots of saliva was a very small, soft morsel of toast, hardly enough to cause such a fuss.

She assumed the punch in the stomach had dislodged the food but as she thought about the episode throughout the evening she knew that he hadn't really been choking beyond all the loud spluttering and coughing. Remembering a horrifying film shown during her first aid course, she understood that someone choking cannot speak or breathe. In this traumatizing film, the mother of the family simply collapsed and died in front of her useless family members after several minutes of silent but wild gesticulating. Michael was not at all silent throughout the attack. Could there have been a cardiac event causing him to lose consciousness? It was during a conversation with one of her concerned children later in the evening when she concluded that he had probably lost consciousness from a plummet in blood pressure. He had gone rapidly from sitting to standing to kneeling on the floor with his head down, all within a few seconds. His damaged autonomic system, that has caused a similar though less dramatic episode in the past, was probably not capable of making the quick adjustments required to stabilize his blood pressure. But at least the relaxing of the muscles while unconscious stopped the coughing and retching. 

He had little memory of the event later in the evening but seemed visibly shaken. So was she. His face maintained a pallor all evening and he was more withdrawn than usual.  His blood pressure was very high but by morning had dipped wildly again. All that morning he was more confused and lethargic, still overcoming the shock she assumed.

She has resolved to keep meal times more tightly controlled. That dinner had been delayed by a late telephone call but otherwise she always tries to have the meal on the table by 6 p.m. at the latest. Any later than that and he loses interest in food as his medication wears off.  5:30 at the latest in future. And she will never leave him to eat unaccompanied. She must always be within earshot from now on.

There was a moment when she thought this was the ugly end. There hadn't even been enough time to call an ambulance; it was all over in seconds. She probably should have alerted someone other than her children but we all know how a hospital stay would have worked out. It seemed more prudent to keep him calm and quiet, sitting right next to her all evening. There is a visit to the neurologist very soon so she will broach the subject.  She is doubtful anything can be done. Just more vigilance. Maybe more medication.

*Frans Snyder, The Pantry, circa 1620.

D-Days

Dementia. Dyskinesia. Dysautonomia. These are the words of Parkinson's Disease looming large for us these days.

A visit to the neurologist to discuss recent events left me with disquieting, disturbing, divided feelings. The odd spell Michael experienced at breakfast one morning two weeks ago, when described to two different doctors this week, elicited two disparate theories: one suggested seizure, the other a low blood pressure attack. Neither was present at the time of the attack, of course, to offer a proper assessment, nor is Michael well enough to undergo any diagnostic testing beyond the basics. Medication for the latter theory was prescribed, though yet to be administered as I struggle with doubt and fear that this drug might exacerbate Michael's tendency toward very high spikes in his blood pressure at times, the erratic highs and lows apparently characteristic of the dysautonomia in advanced PD patients but could also be explained by his longstanding, underlying heart condition. I am also not convinced this event was just a low blood pressure moment, especially since the reading, taken nearly immediately, was extremely high. I have witnessed many of his orthostatic hypotension events and this was nothing like them. More research is required before I can comfortably make that decision to start him on the drug and if I do, Michael will need careful monitoring.

Added to that concern this week a distressed friend confided dysfunctional family issues, revealing to me information I should not know. Further disturbance in my equanimity.

The troubled week was bookended by Death: a good friend on the first Sunday, my dear old aunt on the second. We had just visited the grieving family of the first death the day before and shed a lot of tears when Auntie Joyce's sad news reached us. Her death was not unexpected after she had suffered a massive stroke a month earlier, but sad nonetheless, especially for me since I was unable to visit her in England before she died and cannot attend her funeral. A kindly aunt to us, she was my last living blood relative of that generation. She will be sorely missed as will my friend who left this world far too soon at the age of 62.

So this week I am trying to take charge and dispel all the sad and negative energy generated and dominated by the D-words.  I am changing my vocabulary, refusing to acknowledge the hold they can have on us and keep us down. I am choosing instead to embrace the light that increases daily, to participate, if only in prayer, in the Baha'i fast that precedes the New Year on March 21st, a time of revitalization and joy. These are all issues of a transient life, after all, and how I let them affect me is up to me alone.

Break For Freedom

I am on high alert these days, nervous to walk out of earshot, my engine revving ready to bolt into action. Michael treated me to his most dramatic event yet, albeit very short-lived.

To comply with my new resolution to get away more, even if for just a day, I made quiet plans for a day-trip to Kingston last week to visit old friends; a four hour round trip with about four hours of lunchtime visiting. My caregiver had agreed to sit all day and conspired with me to keep it secret, not wanting to alarm Michael. There is always a struggle to know how much to inform him of my plans. If I say too much, he will instantly fall into an anxiety attack which usually sabotages my plans. If I say too little, he still becomes anxious when I do not return home within the usual three hours. That's what happened last week. When I wasn't home by early evening, his anxiety mounted, despite reassurances from our more-than-competent caregiver and a phone call to me on my way home. He required several hours of soothing hand holding, calming words and medication upon my return. His anxiety returned over the next two days whenever I left the house for my usual short errand-running spurts. By the weekend, he seemed back to normal.

Lately blood pressure has been an issue. In an effort to relieve him of the extreme lows he was experiencing, I very slowly, over several months last year, cut back on his cardiac medications except for the daily aspirin and Crestor, a drug to lower LDL cholesterol. Things improved. No longer was he having frightening near-blackouts on standing, causing him sometimes to fall more severely and with less control. He still had the occasional dangerous end-of-day spike in blood pressure, but no more than before the medications were reduced. On the whole he seemed more stable in that department.

Sunday morning, I had gotten Michael to the table with breakfast before him after helping him in the shower and dressing him, a twice weekly ritual. I had just walked over to the counter to attend to something when I heard sudden loud snoring. Now, Michael will often nod off onto his plate but never until well after he has eaten. I instantly knew this was not right.  I dashed to his side and was alarmed to find him with his head thrown back and slack jawed, unseeing, unresponsive eyes wide open, and this terrible noise coming from him, a noise I associate with the several dying people I have attended in their final hours. This is it, I thought, my adrenaline now in overdrive, my heart racing.

I held him close and called his name. No more than sixty long seconds later he "awoke" and seemed completely fine, as normal as Michael can be; his heart rate was stable; he could speak; he knew my name and his own: there was no chest pain, no weakness, no sweating or headache; in other words, nothing alarming.  When I asked him if he remembered what had just happened, he had some incoherent story about a fall, but there had been nothing of the sort that morning. He simply had no awareness of what had just befallen him, thank goodness. He happily ate his breakfast and life carried on as if nothing had happened.

The question I should not have been debating: Should I take Michael to the hospital? Of course, under normal circumstances that would be the right thing to do but, as you well know, Michael is far from the usual.  With all seemingly and quickly back to "normal" after this event, there was nothing really to report. No longer an emergency, a visit to the hospital with no discernible symptoms, beyond the many associated with his Parkinson's disease, would have meant hours of waiting to see a doctor who might run a battery of complicated tests, then come back two days later with a shrug of the shoulders and a dismissal. In the meantime, Michael would have spun out of control, probably attacking nursing staff and generally behaving like a vicious, frightened bear lashing out to defend himself from imagined assaults. Large doses of powerful sedatives would have been administered, security guards summoned, restraints put in place to calm the wild beast my husband becomes in hospital. At least that is how it has ALWAYS played out so far, with the situation worsening with every subsequent visit.

Instead, thinking he might have had a mild heart attack or a stroke, I gave him a handful (five) of baby aspirin to chew, a technique I have seen paramedics employ the many times they have been summoned to our house for a suspected heart attack. I also monitored his blood pressure.

We have a small digital device for that purpose. I'm never sure how accurate it is but if Michael has a weird reading, I measure my own right after as a kind of control.  I always get my usual reading in the low-normal range. This time the device emitted a code I had to look up: UU EE. Apparently that means the systolic reading exceeds 300, too high for the device to measure. I was so alarmed by this, I continued to measure his blood pressure throughout the morning. Soon after, well within the hour, it was down to 150/ 100. Within two hours it was completely back to normal, 120/80; by the next day down to low-normal, 90/60. Was the first reading a weird electronic error since his blood pressure seemed to reset to normal so quickly?

I have a call in to the home-visit doctor but still have to hear back from him.  I doubt there will be many words of wisdom.  To increase his medications will mean a dangerous lowering of Michael's blood pressure again. To subject him to cardiological tests will be nearly impossible given his present condition and inability to understand and tolerate such interventions.  With each odd episode lately there is further decline in his cognitive state, leading me to believe he may be suffering from frequent small strokes. Given that he suffered his first such event back in September 2006, it is entirely possible there have been many more unwitnessed episodes beyond the few I have seen. Perhaps the dementia he suffers is stroke related, what is called vascular dementia, rather than the dementia associated with Parkinson's disease. Or maybe a combination of the two.

A lot of questions. A lot of unknowns. As usual. In the meantime I nervously go about my business, afraid to leave him for even a moment. I am usually unflappable, stepping into ultra-sangfroid in the face of crisis, but this episode was different; this seemed to be the closest he has ever gotten to actually leaving me. My own heart rate took nearly as long as his blood pressure to stop racing that morning.

A nagging thought is that my happy day away brought all this on with the increased anxiety it caused. My next break for freedom down the highway will require a very calming deep breath before I can convince myself to set out. My foot will be hovering over the brake but wanting to stomp on the gas.