The Caregiver Calling

Mary Ann was pretty tired today.  While I managed to get her up, dressed, to the table for pills and breakfast in time to get to her Tuesday morning group, she did not feel up to it.  She had said when I got her up that she didn’t think she would go today, but I thought after waking up fully and being ready to go in time to get there she might change her mind.

She did act pretty tired after she got up and ended up taking a major nap beginning in late morning.  She probably would not have been able to stay alert for the entire length of the group meeting had she gone to it.

After getting up, she ate lunch and we headed out for a bit.  I needed some coffee. After picking up the coffee, I offered to take her and she accepted going to Dairy Queen to use our buy one, get one free coupon for Blizzards.

It was late enough in the afternoon that she ended up changing into her PJ’s and heading to bed very early.  The Blizzard will have to serve as supper.  I suspect there will be some snacking once or twice during the night.

At noon today, I attended a live Seminar on the computer.  They are called Webinars.  The Neurologist was both a clinician and a researcher in Movement Disorders.  This Webinar concentrated on the non-motor symptoms of Parkinson’s.

The motor symptoms are what people see, stiffness, tremors, shuffling gait, falling, speech problems, problems with swallowing, dyskinetic movements (wavy rather than shakey) caused by the medication.  Then there are many more symptoms that are not visible, that, in fact, have in the past been ignored even by physicians who did not recognize them as part of the Parkinson’s Disease.

It was interesting to hear the list of non-motor symptoms.  It was the story of our last twenty-two years (twenty-three in March).  Long before diagnosis came the first of the sensory symptoms, the loss of Mary Ann’s sense of smell (and taste).  At pretty much the same time the Rapid Eye Movement sleep disorder began, acting out dreams vocally and physically.  While not diagnosed, what sounds very much like sleep apnea also began.  Then came the pain in her left shoulder, going down her arm, the odd feeling in her left hand.

The presenter talked about the fact that in the vast majority of cases, the symptoms begin on one side.  Mary Ann’s symptoms were classic.  As the disease was diagnosed and progressed, early on, the bladder problems and constipation joined the party of symptoms.

Later in the disease process, cognitive issues have arisen, the tip-of-the-tongue frustration as words get lost just before emerging from the mouth (who among us doesn’t share that one). The Orthostatic Hypotension (fainting when erect due to low blood pressure) has come on board with a vengeance.  Hallucinations have also joined the other non-motor symptoms.

Mary Ann’s expression of Parkinson’s includes almost every one of the fifteen or so items listed as possible non-motor symptoms.  Again, they are the ones that are hidden from view.  The presenter pointed to a misconception about Parkinson’s: If she/he looks good, she/he must be doing well — not necessarily so!

One of the benefits of writing this blog, is that I get the chance to describe what is actually going on away from public view as we deal with this disease and its offspring.  When folks ask how Mary Ann is doing, I usually respond with something fairly non-committal, realizing that there is neither time nor interest in the gory details.  Actually, I have the benefit of a cluster of folks who have been in our home with Mary Ann, who understand the behind-the-scenes of what we are experiencing here.  I can share pretty openly with them.  They seem genuinely interested and they know what I am talking about.

There were two areas of disagreement with the presenter today.  She is obviously far more intelligent and knowledgable about Parkinson’s than I am.  Again, she is both a Medical Doctor and a Researcher in Parkinson’s.

She said that in all cases, a change in symptoms that comes on suddenly, in days or a few weeks, cannot be due to a progression in the Parkinson’s Disease.  It only moves very slowly, never quickly.  Her point is well made.  If something changes noticeably, get to the doctor to see what is causing it. Don’t just assume it is the Parkinson’s.  On the other side of it, having lived with Parkinson’s for almost twenty-three years, I am convinced that there are various times when the disease process passes a certain threshold that makes symptoms apparent, symptoms that were not at the same level days or weeks before.  They appear as rapid changes.

My analogy for that is the speech of a toddler.  When words first come, they are indescribably cute, coming one at a time, sometimes at surprising moments.  There is a time of a paucity of speech, just a word here and a word there.  Then all of a sudden, words start getting put together into intelligible streams, short sentences, soon becoming an endless torrent of speech.  It seems to happen so fast, when the process actually has been going on for months in that little mind.  The full speech just bursts out when finally a certain threshold is crossed.

It seems to me that over the years, that is how this disease has progressed, in fits and starts, pleasingly slowly at some times and frighteningly quickly at other times.

The other area of some disagreement was concerning the likelihood of the Parkinson’s leading to dementia.  The presenter seemed to say that the onset of any sort of dementia was just coincidental, not part of the Parkinson’s.  She said it was less likely in the early onset Parkinson’s than in those who were diagnosed later in life.  I had understood the opposite to be so.  Those whose primary symptom, especially at the beginning was tremors, have no more likelihood than anyone else to have dementia later.  At least I read or heard that somewhere.  I cannot guarantee that it is true.  Those whose primary symptom at least at the beginning was bradykinesia, slowness of movement, as was Mary Ann’s, are more likely to have dementia later on.  Again, that is what I have read and/or heard, whether true or not.

The presenter did not seem to be completely conversant with Parkinson’s Disease Dementia, the Dementia with Lewy bodies that can emerge later in the disease.  In fairness, her not mentioning it may have been more a function of the time available in the Webinar than any lack of knowledge.  Her credentials and focus on Parkinson’s and the research she is doing makes clear that she knows whereof she speaks.  I should not presume to question anything that she said.

All in all, the webinar was well done and interesting.  Since I agreed with 98% of what she said, she must have known what she is talking about!  Okay, I know my limitations.  It is just that after so long focusing so much attention on this Disease, watching it progress little by little, following its fluctuations from such an intimate vantage point, it is easy to feel like an expert on it.  The truth is, I am an expert only on one expression of the disease, Mary Ann’s version of Parkinson’s.  On that issue, I will defer to no one, doctor or otherwise.

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