Living with Primary Progressive Aphasia (PPA)
There are two kinds of Aphasia: the kind that has an identifiable cause such as stroke or Traumatic Brain Injury (TBI) … and the kind that doesn’t.
When a person for unexplainable reasons begins to exhibit a progressive deterioration in language functions (speaking, understanding, reading, writing, etc.), Primary Progressive Aphasia (PPA) is suspect. When subsequent MRI scans show brain-cell death in the language area on the left side of the brain, while failing to exhibit any features of Alzheimer’s, or Pick’s disease, the diagnosis is most certainly PPA.
They say that definitive PPA confirmation isn’t possible without direct microscopic examination of brain tissue … normally done in autopsy or sometimes a biopsy (fairly risky). However, that seems to be an issue only for medical research. Since there is, at present, no known cure or drug that can slow the progression perhaps such research will eventually produce useful results.
PPA is what my wife has … since 2007, but not identified until early 2009, just after she turned 75. So we’ve been living with PPA for about seven years … five years since diagnosis.
PPA is often hard to diagnose since the symptoms are gradual and often confusing. Being in our 70s (I’m a week older) we initially thought her speech problem was due to age … but it soon became apparent that something else was going on as writing and reading also began to deteriorate. Being very healthy otherwise our Primary Care Physician (PCP) wasn’t concerned. That was in 2008.
It was only when she began experiencing ‘spinning world’ dizzy spells in early 2009 that we actively sought help. Predictably our PCP diagnosed Benign Paroxysmal Positional Vertigo (BPPV) to recommend physical therapy. Didn’t help. The dizzy spells continued with varying intensity and duration, but then about four months later, while undergoing our annual eye examination, the ophthalmologist suggested she be examined by a local ENT doctor ‘who knows everything about vertigo.’ Well, the ENT guy confirmed what we suspected: she didn’t have vertigo so something else had to be the problem … time would tell.
Interestingly enough, most of the dizzy spells stopped soon after but her speech and handwriting continued to deteriorate prompting us to see a neurologist in December 2009. He did an EEG and MRI to diagnose PPA on December 10, 2009 … a diagnosis that fit all our experiences.
Beginning in 2010, her writing really began to suffer as she was losing fine-motor control of her right hand. Over the year, it became clear that the disease had invaded the motor cortex on the left side of her brain … which controls movement on the right side of the body. By mid-2010, reading became increasingly difficult … she could no longer read a book.
By September 2011, she lost almost all use of her right hand so that it became necessary to use her left hand exclusively for eating and everything else which was difficult since she was naturally right handed. The toes of her right leg were also affected, but the mobility of her right arm and leg remained mostly unaffected.
Balance, however, was affected so that it became necessary for me to help her walk everywhere, even to the bathroom. Since she no longer had use of her right hand, it also became necessary for me to help her dress, tie her shoes, and even to wipe after urination and bowel functions.
When her driver’s license was due for renewal in January 2012, at age 78, she decided not to renew. The disease continued to progress month-by-month throughout 2012 as I continued to take on ever more functions for her. But when fall arrived we once again took our motorhome to the southwest so that the daily variety was able to provide pleasant stimulation for both of us over the winter. Life was good.
The big change for 2013 was to lose the ‘executive function’ of the brain that is responsible for decision making so it seems the disease has now progressed to the frontal-temporal lobe. She could no longer make a dinner choice or choose a TV program so that now I was making all her decisions. The other thing is that after mid-year she could no longer travel … not even to accompany me to the grocery story.
In August 2013, she collapsed after a difficult bowel movement and for the first time in our lives, I found it necessary to call an ambulance. She spent two days in the hospital recovering. At this point, any significant exertion – just a stand-up shower – can be exhausting. Morning activities are obviously better than evenings.
Such is the nature of the disease’s progression. You don’t notice the changes on a day-by-day basis but do from month-to-month. What we have today will be different next month … and even more-so next year.
My wife took care of me for almost 60 years. I did very little around the house … she was the homemaker and for the most part I was the breadwinner. After the kids left (we have four) she went to work mostly to avoid boredom and was surprised I think to learn she was more than equal to everyone else in the workplace so that she was soon doing the work of what previously took three people. And she still did everything around the house (I was bad … but she never complained). She was just a very efficient person.
Now I do it all … but I’m not that efficient. I’ve always been a project person (no clock) but now I find the need to develop a routine … she helps me in that and we often find great satisfaction when I finally recognize the obvious.
Communication: Here’s where being married 60 years helps. We’ve always had well developed non-verbal communication skills … a look, a nod, a gesture … and we’re able to quickly understand the meaning. Very rarely does she get mildly frustrated in trying to say something that’s timely in its importance … at which point I concentrate to not miss any of the associated signs … to almost always understand what she wants me to do in a time to affect the outcome. For the most part, her intelligence and pleasant demeanor has remained unaffected throughout these years.
We’re a little bit old-school. For as long as I can remember we’ve met each new challenge together by adapting to what we can’t change. No feeling sorry … no need for special consideration from anyone … we’ve no time for any of that … so we just enjoy what each day brings and so far it’s been pretty good. We still have a lot to be thankful for and we are, as our grandkids say, BFF (best friends forever).
To learn more about PPA click here.
Comments are not allowed