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Friday, February 24, 2012

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.


  1. What a ride, Claire. I was on the edge of my seat, and my heart goes out to you both. I was looking forward to another post from you. I have to admit this one was difficult to read, since I sometimes fear for my own future and what it will be like, but forewarned is forearmed as they say. After suffering a fall earlier in the week myself, I can relate to that issue. Thanks so much for your writing and your encouragement. They mean everything!

  2. Bruce, your experience with this disease may be nothing like Michael's, who has an underlying cardiovascular condition probably completely unrelated to the PD. As I said above, it may be more the cause of the dementia than the Parkinson's, especially since I suspect he his having lots of mini-strokes. I hope your fall wasn't serious.

  3. True. And insomuch as Parkinson's is a "designer disease" no two cases are alike, and I do realize that. I may have cracked a rib as i have lots of rib pain, but other than that I feel lucky that I escaped rather unscathed! Thanks for pointing out that no two cases are the same. That is important for me to keep remembering and for the public at large to realize as well!

  4. OufClaire!I relived it again, but with more intensity than the Monday am that you first told me about it. That is becasue your writing is even better than your real-life story telling, if that is possible. I have been scratching my brain and heart to know how we will handle the next outing.Even when you are out to your normal activities he looks at his're his heroine and rightly so!