Our then elementary-school-age daughter discovered the first clue: Her mom laughed hysterically at the word “brick.” Then came the day I opened our monthly credit card bill to find $2,000 in charges from a home shopping network. Homecare agencies cancelled our aides due to incidents involving my wife, Patti’s, verbal and physical outbursts. Finally, I returned home one afternoon to discover our stove top on fire while Patti sat unconcerned or unaware at the kitchen table. Looking back, were there earlier clues that my wife’s MS symptoms might not stop with the physical? Yes, but who knew to look? We were still reeling from the physical symptoms of Patti’s diagnosis and trying to learn to live with MS as a family. In a few short years, my wife had become wheelchair-bound. We were swamped in physical adaptations, and in the early and mid-1990s, cognitive problems associated with MS were simply not mentioned very often. Now researchers tell us thatMS can, in some cases, cause permanent cognitive problems. In Patti’s case, those problems are profound. We first heard the phrases “pseudobulbar affect” and “emotional lability” while visiting with Patti’s neurologist, who said they were caused by MS. The suspected culprit was damage to the myelin shielding nerves that transport information within the brain.
Emotional lability involves excessive emotional responses. Pseudobulbar affect results in inappropriate, uncontrollable episodes of laughing, crying or both. That’s where the amusement at the word “brick” came in, though we also have had our share of Patti laughing at funerals. These public episodes can be awkward since MS doesn’t come with a handy disclaimer sign.
Emotional lability was also behind Patti’s outbursts at homecare aides and, sadly, even our daughter. A mother screaming “I wish you had never been born” at a young child is a moment in time you wish you could erase.
Following a brain MRI , Patti’s neurologist’s noted, “there certainly are abnormalities consisting of atrophy, multiple plaques and thinning of the corpus callosum, which correlates with her cognitive impairment. She has pseudobulbar affect and emotional lability caused by her MS. She also has cognitive impairment.” So began a sort of verbal dance. Our doctor was hesitant to label MS as the cause of Patti’s cognitive impairment, which is confusing. In part, I suspect the reason is that cognitive impairment is associated with the boogeyman of medical conditions: dementia. Even our medical insurance and our prescription plan got in on the runaround, refusing to simultaneously approve the expense of both Avonex® (for MS) and Aricept® (for “dementia-like” symptoms) at the same time.
Patti quit the Avonex. It was having no effect, while her cognitive impairment continued to create a growing litany of problems: obsessive behavior, memory loss, impaired reasoning, an inability to direct her own medical care, a loss of legal and financial competency, and complications for her physical rehabilitation. Aricept, once prescribed, slowed this progression both to the observer and on follow-up brain MRIs, but our family and friends are still confused by Patti’s cognitive impairment. It’s an invisible symptom. It comes and goes. But ignoring it is dangerous business, as some have learned the hard way. Starting more than a decade ago, Patti required verbal cues to help her when eating. She also needed her food cut to bite-size. While she was safe on my watch, other people may have felt that I treated Patti condescendingly. Visiting with her parents one afternoon in 1997, Patti reached for a hoagie sandwich. As my wife choked, turned blue and lost consciousness, a 911 operator successfully talked her father through administering the Heimlich maneuver to a wheelchair-bound person.
Looking back, we could debate about whether it was the inability to swallow – a physicalMS symptom called dysphagia – that caused the choking, or if impaired reasoning – a cognitive symptom – caused Patti to grab something she knew she could not chew and swallow, but it’s a rhetorical question. When cognitive impairment becomes serious, a person’s caregiver, family and friends must cross the line of beginning to think for someone else, to act in their best interests.
Almost two years ago, I tried to capture the effects of some of the invisible symptoms of MS. I taped Patti taking a cognitive test where she had to name a certain number of animals in a minute and uploaded it to YouTube (The video can still be seen at www.youtube.com/watch?v=th-ejvCiXiM or below on this webpage). While Patti appeared fine at first, it quickly became apparent that she needed triple the time allotted to complete the task, with coaching. Is this true for everyone with MS? Definitely not. The level of progression and severity of MS symptoms vary for everyone. Some people have mild cognitive impairment. Others have no problem at all. However, it can be disconcerting to look at the statistics and see the possibility of cognitive decline looming before you or a loved one. Having lived through it, I believe it is better to know what is possible than to have no idea what is happening when the symptoms start. Keep this in mind: often, our philosophy of self is founded in philosopher René Descartes’ statement, “Cogito, ergo sum,” or “I think, therefore I am.” In our family we’ve learned that thinking “differently,” whether by choice or through myelin deterioration, does not change, “I am.”
above article published in MS Focus Magazine, Winter 2009 Multiple Sclerosis Foundation
