More of Becki’s Story
The information below is provided by Becki’s husband, Denny. The discussion of technical terms is my layman’s understanding, based on considerable reading and research and discussions with several professionals. I strive to be as straightforward and accurate as possible.
My purpose is not to focus on Becki’s challenges, but rather to share information that may be helpful to others. Thousands of people affected by stroke and aphasia, as well as many other diseases and disabilities, have challenges far greater than Becki’s. See examples of people affected by stroke and aphasia at Faces of Aphasia.
Becki is thankful and feels very blessed for the life she has been able to experience, despite her strokes and aphasia. Although our life may have been different than we initially envisioned, God had a different plan. We accept that His plan likely turned out far better than our plan would have transpired.
Types of Strokes and Aphasia
Strokes can be classified into 2 main categories – ischemic strokes and hemorrhagic strokes. Ischemic strokes are caused by blockage of an artery (or, in rare instances, a vein). Hemorrhagic strokes, which Becki had, are caused when an artery in the brain leaks or bursts (i.e., bleeding occurs).
Hemorrhagic strokes can be divided into 2 main categories: intracerebral hemorrhage, when bleeding is from the blood vessels within the brain; and subarachnoid hemorrhage, when bleeding is in the subarachnoid space (the space between the brain and the membranes that cover the brain). Hemorrhagic strokes comprise about 15 percent of all strokes and are more often fatal.
Neuroscientists estimate that, on average, there are 100 trillion neural connections (between brain cells, or neurons) that send and retrieve information in the brain. When a stroke occurs and brain cells are damaged, some less-damaged cells can heal and start to function more normally. Other cells die, resulting in loss of many neural connections. Different parts of the brain, however, can take over, or compensate, for the damaged areas. This re-wiring is called neuroplasticity, which is a primary mechanism for stroke recovery. More recent research by neuroscientists suggests that the brain may also create new nerve cells through a process called neurogenesis, although its role in recovery from hemorrhagic strokes is still being studied.
Approximately one-third of people who have strokes develop aphasia, which is an impairment of language affecting the production or comprehension of speech and the ability to read or write. Aphasia clinicians and researchers generally categorize aphasia into anywhere from two to nine types, depending on their specific context of discussion. A simple two type classification includes expressive aphasia (non-fluent, or Broca’s aphasia) and receptive aphasia (fluent, or Wernicke’s aphasia). A person with expressive aphasia has difficulty speaking and/or writing. A person with receptive aphasia has difficulty with verbal and/or reading comprehension. Most people with aphasia have some degree of both expressive and receptive aphasia but may have a greater deficit in one area or the other depending on what part of the brain is most damaged. Because each person’s brain is different and each stroke and resultant damage is different, aphasia clinicians generally don’t like to categorize a person’s aphasia neatly into just one category. The National Aphasia Association (NAA) website provides a more detailed discussion of types of aphasia.
Becki’s Strokes and Aphasia
Becki’s strokes were subarachnoid hemorrhages due to the bleeding (and bursting) of an arteriovenous malformation (AVM), an abnormal entanglement of blood vessels present and growing on her brain since birth. Her damage was on the left side of the brain mostly in parts of her temporal, parietal and occipital lobes (lobes and functions). These areas are involved in language processing, and comprehension of both written and spoken language.
Interpretation of Becki’s recent CT scan described the significant loss of brain cells in these areas. Consequently, other areas of Becki’s brain re-established new neural connections to compensate for the damaged cells. Presumably, most of the damage was done by the major 1976 stroke, and compensatory re-wiring of neural connections began after that. However, there is speculation that some compensation may have occurred in response to the apparent bleed in 1963, when she was in 6th grade. If so, that already established compensation may have aided in her recovery from the 1976 stroke.
Although a particular person’s aphasia does not necessarily fit nicely into a specific category, Becki’s aphasia is most like the Wernicke’s type (verbal and reading comprehension deficit), which is consistent with the area of damage in her brain. After her February 1976, stroke, the focus was on improving her expressive abilities, learning to say the words she previously knew but could not say. Although she has had a degree of expressive aphasia since her 1976 stroke, many people probably did not notice, since she is usually fluent in her speaking and is quite sociable. Her receptive aphasia primarily included difficulty in reading comprehension, with less noticeable, but some, difficulty with verbal comprehension.
Current Situation (December 2022)
More recently, Becki is experiencing greater difficulty with her receptive aphasia, especially her verbal comprehension (auditory word comprehension). Although some increased difficulty was not totally unexpected, given our advancing age, things seemed to progress more rapidly than we might have expected. An interesting article I found about auditory comprehension deficit from strokes seemed to describe Becki’s situation to a tee, in my opinion. Changes have also occurred with her reading comprehension, but currently we are able to rely on her being able to read things I write down to support our communication.
In July 2022, Becki’s primary care provider ordered a CT scan. We wondered if any recent acute events were causing Becki’s changes. In August we started meeting with a speech-language pathologist (SLP) and in October we met with a neurologist who has expertise with aphasia. Both the SLP and the neurologist seemed intrigued and somewhat perplexed with Becki’s aphasia changes.
The SLP indicated that in her almost 35 years of practice she has not seen a situation quite like Becki’s, being relatively fluent with both verbal and written expression, but having the degree of difficulty she has with verbal comprehension and to a lesser degree with written comprehension. We understand that verbal comprehension deficits are the most difficult type of aphasia to address with therapy. We have started a home therapy regimen using commercially available apps on a tablet, as well as other resources. We are also exploring supportive communication techniques to assist our daily interactions.
The neurologist also seemed intrigued by Becki. Several times during his almost 1.5-hour assessment he told Becki he was still trying to figure her out. His review of the CT scan did not identify recent acute changes in her brain that would account for her aphasia changes. He opined that the changes may be due to an age-related decline in compensatory capacity. My layman’s understanding of this is that although we all have decline of cognitive ability with age, the neural connections that were re-established in other areas of Becki’s brain to compensate for the damaged areas were not as strong as the original networks, and thus are more prone to greater decline with age.
The neurologist indicated that conducting an MRI would help in his assessment, but unfortunately, radiologists are reluctant to perform an MRI on Becki’s brain. During her 1976 surgery, the neurosurgeon used a metal clip to clip off the leaking vessels. During her 1998 surgery, the neurosurgeon used titanium clips and replaced the original 1976 metal clips with titanium. The radiologists, however, both back in 1999 and now, still are not 100.0 percent confident there are no remaining metal remnants, and thus, are reluctant to perform an MRI. The neurologist indicated being able to review the CT scan from the time of the 1998 stroke might be helpful, but these records were no longer available, which is also true for CT scans completed as recently as 2016.
As a result of our current journey, I have a few pertinent take-aways. First, had we anticipated Becki’s current aphasia changes, perhaps we might have started therapy earlier. However, as Becki has always done a good job compensating for her deficits, maybe too good of a job, it somewhat snuck up on us. As our speech therapist and doctors have mentioned, hindsight is always 20/20 and I should not beat myself up. Not only can we not go back, but there is also no way to know if the outcome would have been different. Now that I have recovered from my initial anxiety and sleep-disturbed nights about this, my goal now is to share Becki’s experience in the hope it might help others in similar situations.
Second, I offer a word of caution regarding our home therapy regimen. A good friend and retired physician who knows my personality well suggested I be careful about being too intense and creating unintended consequences, such as anxiety and frustration, which could impede the desired outcomes of the therapeutic activities. That is exactly what happened! When we first started, the scientist in me took over and I kept track of the time it took, and percentage correct for each module, thinking I could measure progress. When Becki became cognizant of me keeping those metrics, she began to feel like she was constantly taking a test that she was failing. Her anxiety reached a level such that, at times, she would even struggle catching her breath. Our approach has now changed. Therapy activities are no longer a test or contest, or measured, but rather a natural part of our daily routine as it may be for those who complete crosswords or read the newspaper daily.
Finally, I would urge patients to always request a copy of any CT scans or MRI scans for their own records. These should now all be digital and easy to obtain right after they are performed. Having access to these records now could potentially assist physicians in determining appropriate diagnostic tests that might help better understand Becki’s current changes. While it is too late now for us, it doesn’t have to be that way for others.
Our hope is that other people in similar situations can benefit from some of the lessons we’ve learned through Becki’s experience.