A Follow On to "I thought I had..."
Where I ask for suggestions
Photo by Priscilla Du Preez on Unsplash
Those of you who have followed me for a while know that because I thought I had primary progressive aphasia, I was going to write a memoir about it from the perspective of the patient with the disease. Most material on dementia is written for caregivers. But people with this diagnosis may want an inside perspective. Plus, writing while losing language poses interesting problems.
But…as we found out a few weeks ago, I don’t appear to have dementia. Good news! The best! Alleluia!
Now what happens to the work on the memoir?
I am going to post the first chapter here. Do you have ideas for how this could be rewritten or repurposed? I am looking for suggestions. Make it fiction? Drop it? Research it like crazy and attempt to portray the process? Make it sci-fi? Does PPA turn out to be a way to learn alien speech? Or let aliens speak? Anyway, here’s the current draft of the first chapter.
Chapter 1 – Waiting
I sit in the great atrium of the Mayo Clinic, a huge space with a ceiling several stories high and a wall of glass filled with light. Someone plays show tunes on the piano, and people with serious expressions walk past him, barely noticing.
My husband strolls toward me from the direction of the elevators. I am sitting by the window in a brown padded chair, trying to look calm. He hands me a cup of steaming coffee and sits down beside me. “Hey, Ann. How’s it going?” Apparently, he noticed my expression.
Pat is an actuary. He uses spreadsheets to analyze everything possible, so I like to tease him. Everything is reducible to Excel spreadsheets. Excelsior. Excellivator. Excelephant. He generally reads Excel spreadsheets much better than he reads faces, but mine must be showing my turmoil pretty clearly.
“Here!” I shove my computer into his hands and point at the screen. Normally I can communicate with my husband in complete sentences but now I am beyond words.
He scans the text and looks up, his eyes wide. “Have you noticed any of the things they talk about?”
I pause, thinking, trying to recall. I live inside my head so much, and Pat and I don’t confide in one another much unless it is serious. And I didn’t think it was serious. Gosh, I don’t think I told him what I was worried about! Then again, maybe I did, and neither of us remembers!
“…Yes…I have. Beginning a year ago.” I start to cry. “I was mixing up ho-ho-homonyms when typing. You know, there and their, know and no, pear, pair and…p-p-p-pare. Occasionally I couldn’t even remember how to spell a word!”
“Only occasionally?” Did I mention Pat is also very literal?
“I’m serious!” I wailed. Or was it whaled?
“Sorry. Go on.”
“I am finding word recall to be difficult. We have talked about that. You know I can’t teach anymore…When every sentence has at least one scientific term in it I can’t remember, it is incredibly frustrating and humiliating!”
“I’m sorry, Ann.”
I blow my nose on the tissue he hands to me.
I take a deep breath and try to calm down. “I told my neurologist about it last year. He gave me a simple test and said I was probably just fine and to check back in a year.”
“What did the neurologist here recommend?”
“She didn’t. I have no definite diagnosis yet. And there is no treatment anyway.” I pause and wipe my eyes with fresh tissues. No need to be gross.
“So it’s not definite yet! Let’s avoid despair for now. It could be something else, like not enough vitamins.”
“Yes, or too little hormone, or a tumor… sorry, not helpful. Yes, it could be something else. We may not know for a while, though.”
“Why?” He looks surprised.
“She gave the impression that I would need to have a whole battery of tests. I need to see a neuropsychologist. The tests can take weeks.”
I had come to the Mayo Clinic, arguably the most eminent clinic in the US, to try to sort out my cardiac and brain health. I was now 69, the age at which my grandmother died. The cardiologist did a series of sophisticated tests and identified the problem and a plan of treatment. I didn’t expect there to be problems with my brain, so I wasn’t worried. The neurologist asked many questions about my symptoms and gave me small tests looking at my memory, speech, language, problem solving, a few tongue twisters, and tested my reflexes. I didn’t think it revealed anything particularly significant, except maybe a fail on the tongue twisters, and I don’t recall her indicating a problem.
I read her report while Pat was off getting coffee. The notes began as usual. “Miss Gauger is a pleasant 69-year-old woman with a history of…” and the litany of my illnesses began. But then a surprise: “I agree with her neurologist that she should be assessed for PPA.” What?
A quick check of Google revealed, “Primary Progressive Aphasia (PPA) is a rare dementia that affects a person’s language. Individuals with PPA may experience difficulties with word recall, grammar, comprehension, and/or speech. Other neurological systems are eventually affected. It is untreatable.”
I freaked. My mind focussed painfully on the words “rare dementia.” A wave of anxiety rose up from my core and into my throat. PPA affects language first and then the mind. The two things that I value most about myself are my language abilities and my intellect. PPA threatened to take it all.
“Well,” Pat says, “Let’s put it out of our minds until w have more information.”
I am not panic-free instantaneously. But I agree to wait. Occasionally anxiety does sneak up on me, especially since I learned that getting diagnosed will take longer than I thought. Three months have passed and I still have not seen a neuropsychologist. It turns out they are few and overworked. My doctor at home checks my hormone and vitamin levels. They are okay. He refers me for speech therapy and the therapist concludes, yes, I probably do have PPA. An MRI revealed no tumors, but also no brain deterioration, so no, maybe I don’t have PPA.
Here is the reason the speech therapist and I think I have PPA. My language abilities have dropped from the 99th percentile to about the 50th. I can still write and my language skills are good. But they used to be stellar.
I start researching to find out more. The first thing I discover is that nearly all the resources available aim at caregivers or professionals. It makes sense if you think the person with dementia is no longer there.
I am determined to demonstrate that this is not true. That’s why I am writing this. I want other people with my condition to hear a first-person account of what it is like to live with PPA and to know they are not alone. They say I have a large “cognitive reserve,” so maybe I can carry this project forward. I ask my doctor to write a commentary based on his observations of me as an objective observer. I hope my family will want to contribute too.
One might call this making lemonade out of lemons. But I have a secret ingredient. It’s called faith. If this is something meant to happen, I have two choices. I can rail against the slings and arrows of outrageous fortune, or I can accept it. Say yes to it. I can surrender willingly the two things I value most about myself, my language abilities and my mind. I will give all of me into God’s hands. I have wanted to do this for a long time. I have tried several times, but I am not a saint, and I keep taking things back.
No doubt that will happen again as things become more real. But I can keep making the gift.
Time marches on. I worry about time being wasted that could be used for preparation. I try to shove things along. When the first person my GP refers me to seems to have trouble keeping her books straight and doesn’t know what PPA is, I start looking on my own.
I contact the University of Washington. They have a memory and brain clinic. The first number I dial takes me to a helpful psychologist who gives me another number. That number goes to a nurse who says they are only seeing people scheduled for surgery. Yikes!
I try getting a referral from my doctor to the UW and don’t hear anything for four more months. I am finally scheduled for an intake interview in December. The nurse practitioner I see does many of the same tests I have already had and agrees I have cognitive impairment, at least. Wonderful. She will refer me to a neuropsychologist for assessment, but warns me that it may take three months or more.
Now begins the winter of my discontent. Sorry, Shakespeare. Perhaps this is an exaggeration, perhaps not. On the one hand, I am learning to lean back into God’s arms and even enjoy the slow losses. On the other hand, some days I am filled with anxiety. So much for trust.
My husband sees signs of deterioration before I think they are there. He says things like, “We are going to the pharmacy after speech therapy, as I told you before.” He probably did. But I was probably thinking about something else and didn’t hear. This is nothing new. If you say something to me while I am reading I won’t hear, and if you hand me something I won’t remember getting it. When I taught high school, I told students not to turn in homework by handing it to me while I was talking to others. I would lose it. And that was 50 years ago.
Besides, my husband doesn’t hear conversations too. He hyperfocuses and doesn’t hear anything I say unless I call his name first. Plus I think his hearing is deteriorating. I can hear his phone buzzing from across the room and he won’t notice, even when it is right beside him.
I say, “I was not listening. And you had better lose that phrase, ‘as I told you before.’ I have told you lots of things you don’t remember.”
The phrase pricks me as a not so subtle reminder that he thinks my memory may be declining. If it is, how can I tell, given who my husband is? We seem to both have selective attention problems!
Pat doesn’t know what to do or say or how to help, as intimate communication is not an actuarial strength. I try to get him to talk. When nothing happens, I get angry, and verbally pummel him, trying to waken him to the potential difficulties to come. When he doesn’t know what to say in response to my barrage, he becomes sullen, silent, frowning at my insistence that he respond.
“What are you thinking? I need to know what is going on inside your head!”
“I don’t know what to say. This doesn’t make any sense.”
“Just tell me what you are thinking. Tell me how this makes you feel!” Oh foolish woman, he never was good at talking about his feelings. Why do I think he will be able to now?
Finally he says, “I am afraid I won’t know what to do.”
That’s what I am afraid of too.
My last few months have become difficult. It’s more than inconvenient. As a writer, I need words, language, clarity, and expression. But as things progress, I find I am constantly making typos. I reach for the wrong letters, spelling phonetically. My tongue stumbles over words sometimes. I mix up homonyms. And I can’t remember names, often.
I mentally skipped the Advent preparations for Christmas. (That was the time for the UW appointment.) We didn’t decorate at all and I left the Christmas day planning to my daughter. I can’t remember if I went to Christmas Mass.
It is (kind of) interesting to watch my mind simplify, to hide words from me, and to make what used to be simple harder. Life becomes something like a guessing game. “Sounds like… you know, he had a beard, lived in England…and wrote plays…”
My computer has turned into Moriarity and I have become Sherlock. The blasted machine seems to delight in interrupting and insisting I do something else, NOW, but when I get back to my original task I can’t find the page. Or remember it! It can take me all morning to deal with messages and emails.
At my neurologist visit, he says I should start speech therapy and get a quantitative brain MRI. When I see the speech therapist, she talks about assistive technologies and strategies to maintain focus. The stars are not lining up as I would like. And I still have months to go before my testing.
I have been having trouble with my tongue. First, I get angry or frustrated easily and yell at Pat. It’s not that I don’t have things to be angry or frustrated about—I do. But they are (mostly) not Pat’s fault. That is problem #1.
I have been having trouble finding words and getting them out correctly. Ordinary conversation is usually OK, but I may have false starts with words. For example, I want to say: Let’s choose another program, but what comes out is: Let’s choose another problem, er, pogram, er, program. Everybody does this, I know, but most don’t have to try three or four times. Problem #2.
I am having trouble swallowing, not always, just sometimes. Rather, I have trouble keeping food or drink in my mouth until I can swallow. I can’t drink coffee from a mug without having some dribble out of the corners of my mouth. Pills get jammed in my throat sometimes. These sorts of problems are happening more often than they used to. Implication: My tongue, cheeks, and esophagus are not doing their job as well as they used to. Problem #3
These are small difficulties that portend bigger problems on the horizon. I still have not been fully evaluated, and it may be several more months before I am. Or I might be noticing every mistake now that I may be developing dementia. They call such selective noticing “confirmation bias.”
It's not just having trouble with pronouncing words. It's difficult to control my moods and reactions. I have less restraint in what I say and when I say things. It's like somebody uncorked the angry genie, and he pops out of the bottle really easily now. I have read that this is one of the things that happens with dementia. People have behavioral issues because they can't self-regulate. They have no inhibitions. Behavioral issues may be less extreme with PPA, but I am sure plenty of feelings of frustration will boil over when communication is tough.
I decide to do an end run around the University of Washington and go straight to the source. I request an appointment at the Mayo Clinic neurology department. Within several weeks I am offered an appointment at the beginning of April 2023.
Pure Poetic Angst (PPA)
What if it’s PPA, the dread aphasia, that leads to slow brain death, Oh God, Is this the way to teach Surrender? It must be so! What’s worse— the loss of language or the loss of mind? I might (have mercy!) have dementia, my mind soon husked down to the cob. I picture how the battered salmon endures a long decay. God, grant me all grace I need, if that should be my way. Speaking words communicates my inmost thoughts, my deep desires, my needs and wants, my inner fires. If my speech is lost, will I go too? And the loss of language? A poem’s savor is in the mind and on the tongue! Seize the time, beg muse for favor til my songs are sung.
At ninety, I have the same problems. I’m just trying to keep busy and involved in everyday life.
Research it like crazy and attempt to portray the process - using fiction. Just my two cents.