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Thursday, March 22, 2012

Facebook Follies

Facebook has become my friend, virtually linking me, often in real time, to my true flesh-and-blood friends. I check it frequently for updates on people's lives. I enjoy their news and the many links they provide; some educate, most simply entertain. I often laugh at silly videos or I am moved to tears, over a beautiful musical contribution, or contemplation over a thought-provoking news clip. It is sometimes this shut-in's only connection to the outside world.

Recently a friend shared a short video that tickled my fancy. Entitled "How to Piss off a Frog", it showed the hand of a young woman holding an iphone in front of a large frog. On the screen of this device were many virtual flies moving about. The frog could obviously see these creatures because he tried repeatedly to zap them with his tongue, unsuccessfully, of course. What made the video so funny was at the very end when the cruel human in this story reached out her finger, only to have it nastily attacked by the annoyed frog. Poetic justice.

Facebook allows me to "share" these little tidbits on my own page, which really amounts to a virtual bulletin board for all of my friends to see. Whenever there is an interaction with someone, I am helpfully notified on my email account, just in case I hadn't bothered to check in on Facebook that day. A foolproof system so you never miss a message.

Wednesday was a day like any other; my email account announced several interactions.  One stood out and startled me.  I hadn't heard anything from this friend in well over a year. According to the announcement, he had apparently shared my frog video. This struck me as very strange so I decided to do some sleuthing. There was no record of this video on his own Facebook page as there should have been if he had actually shared it. There was also no record of the encounter on my own page, as there always is.  I double-checked the email address to be certain because my heart was racing now with a mystery. Yes, it was the Facebook notification address, the same that always appears with every announcement. Even though I know my friend would have enjoyed this silly little joke, it could only be some kind of cruel joke or some technological glitch in the system. That must be it, I reasoned with myself, even though I wanted to think that somehow this friend had seen my humorous little contribution and had had a good laugh.

But, you see, that can't be possible.  Milan has been dead for over a year. Facebook in heaven? Icloud?I'd like to think so even though I know the more mundane, prosaic explanation is probably the correct one. My shock worn off, I've been smiling ever since and refuse to erase the evidence of his "activity" from my email. A whole new dimension to my circumscribed life. I should connect with Mark Zuckerberg, Mr. Facebook himself; I wonder if he knows.

*"Have a Good Lunch" by Domenico Salvagnin

Monday, March 12, 2012

The Motillium Cotillion

Another drug, another dance.  This one conjures up images of grand Southern balls, its generic name, domperidone, the fancy wine one might serve at such an event.  They are the names for a drug newly prescribed to Michael. Its general use is for stomach disorders, to increase motility of the gut - hence the cute name Motillium - and to reduce acid reflux.  It has also been effective increasing breast milk supply in nursing mothers, a use I frankly find rather frightening.

So you might be wondering why on earth this drug might be at all appropriate given Michael's definite maleness and lack of acid reflux as far as I am aware. It has ostensibly been prescribed to level out the extreme low blood pressure moments Michael has been suffering. This drug has been found to be effective treating this problem in late stage Parkinson's patients who are suffering the effects of dysautonomia, the degeneration of the autonomic system, characterized by erratic blood pressure, urinary and bowel disorders, breathing problems, sexual dysfunction, all of which have afflicted Michael. How this drug will work on the blood pressure is a mystery to me, but perhaps by increasing the motility of the gut, somehow the entire autonomic system is improved. I am once again reminded of the connection of all things and in this case, another clear example of the stomach being connected to the heart being connected to the brain.

But that is exactly the case. The human body is a miraculous array of systems all closely linked to one another with the brain acting as the control room.  It turns out that this drug is a dopamine agonist, something which promotes the body's effective use of dopamine, a neurotransmitter or a chemical released by nerve cells to send signals to other nerve cells. In Michael's case, he takes a synthetic version of it, Sinemet, to replace his own diminishing supply. Increasing the availability of dopamine to the body should improve all the impaired systems that Parkinson's so ruthlessly destroys. At least, that is how my untutored, unscientific mind is managing to understand it.

However, with every new drug, no matter how effective it might eventually be, there comes a period of adjustment as Michael's own individual response to the drug manifests.  From the list of the possible side effects for this drug, nothing seems too alarming. It has been used fairly safely for many. But I have learned that Michael is now in a very fragile state and even a minor change, internally or externally, can unhinge him mentally. So the addition of anything new can launch us into a wild dance as we figure out the new steps together, his body definitely leading us.

It took me an entire week to fill the prescription, my doubt was so great. Then last Friday I stood up from my position with my back to the wall and engaged in the dance. But I started slowly. The prescribed amount is a 10 mg tablet three times daily. I cut the small white pills in half and gave only two of those the first day. There seemed to be an almost immediate reaction. He clutched his gut a few hours later and that haunted, maniacal look returned. Later in the day he complained of pains running up the outside of his thighs. Neither of these complaints might have been caused by the drug, but to be careful I gave no more that day.

The next day I gave three half doses and didn't tell him I was doing so after his adamant refusal the day before to continue its use. There was nothing untoward the rest of the day. Ditto for Sunday.

Then last night he awoke anxious and perturbed, summoning me with our low-tech system, that raucous clang of metal-on-metal I have come to dread.  Middle-of-the-night summonses are jarring and unpredictable. When I enter his room, I never know what might be before me. Last night he was wide-eyed and panicky. Not yet 5 a.m. it was too early to declare the day open and I didn't want to give him a sedative unless absolutely necessary; I needed him awake at the usual time so I could meet my friend for our usual Monday morning walk and breakfast. I put his radio on for company and tried to grab a few more winks of sleep.

Well before 7 a.m. he was clanging again. He is never so fully awake that early. He looked tired but wide-eyed with near panic. With me up and moving around I thought he might relax and fall asleep but when it was obvious he wouldn't, I gave him his morning dose half an hour earlier and got him up shortly after.

The most amazing thing then presented itself. Michael, though looking haunted, was able to speak in full sentences. He got up, stretching and moving around in the most normal way. And he was pretty frisky and amorous, catching me off guard. He was delightfully back. I was tempted to cancel my plans just to enjoy a cup of tea and a possible conversation with him but I also know that these little miracles are usually short-lived so I left him in our caregiver's capable hands and skipped out the door.

On my return, he met me at the door, pointing to his heart and gut. "We have to go to the hospital," he declared. He thought he was having another heart attack. I knew otherwise and calmly told him so, reminding him of the horror that hospitals represent to him. I shuffled him off to the couch, took his vital signs (blood pressure was very high), gave him an anti-anxiety pill, then curled up on the couch with him for a nap to catch up on my own lost sleep. Within an hour he was back to normal - old normal, not the lusty, verbal, morning guy who quite likely could have swept me onto the dance floor if I'd stuck around.

So our dance will continue as I gradually increase the drug up to the full prescription. This morning's brightness was a good sign but it also hinted at an increase in the wild mania we've encountered before as more dopamine is made available to his body. Then the decision will be to chemically straight-jacket him again by removing the drug or to endure the mania with the increased mobility and awareness, a dance I am all too familiar with and hate. I know the doctor's response to the latter problem would be to increase his anti-psychotic medication, piling up more drugs and returning him to a dopey state, probably cancelling out the benefits of the Motillium.

At some point someone has to call an end to the party.

*Ramon Casas, Bal de Tarda, 1896.

Monday, March 5, 2012


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.