Umbrella Bicycle Giraffe

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Umbrella Bicycle Giraffe

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(From the Community Caregiving Journal 3-word prompt News, Drip, Blanket.)

"Did what I just say sound schizoid to you?"

I give my proud-looking partner a little smile. "How often are you going to ask me that question?"

She smiles back. "Uh, once an hour?"

She asks me to tell her when I think she's being psychotic. I ask myself: Is her frequent questioning psychotic? What about her frequent interruptions to give me any and all news that occurs to her? Certainly I think her belief that she was subjected to "X-ray brain surgery" in 1982 is a delusion, and she knows that I do not share that belief.

She asks me these questions as I slip under my blanket, ready to go to sleep. She wants to know what about her points to schizophrenia, now that she has heard it -- again -- from her neurologist.

I say, "Tangential speech, for one."

She says, "Give me an example."

I beg off (I need to sleep) and tell her that I will transcribe the recording of our appointment, so that we can go over it together.

On Monday my partner had sat in the back seat as I drove, which made things easier for both of us. As usual, her neurologist opened with the question, "What's the main thing bothering you?"

My partner answered, and I quote, "Uh, I've started integrating the, um, what I would put a name of Marfan Syndrome, heart unreliability, um, to the way adrenalin has been a very large part of my life. Um, I for a long time didn't think of emotions as sources of adrenalin, but I see them now as sources. The therapists who consistently said, um, acknowledge emotions and express them and stand up for yourself were helpful in that, and I have noted that -- "

The neurologist reached for the forms she had started filling out in the waiting room, before we were called. I had completed them for her. I told him she "needs to sign just a couple of pages."

My partner continued, "-- that the emotions when I acknowledge them, there is, uh, feeling change and then it goes away. There's also sensations, um, have their adrenalin component as well. Component as well."

The neurologist said, "Mm hm."

"And so I'm seeing those as sources of patching up for the valve, um, that otherwise would be kind of leaky and scary," my partner concluded.

I could point to that and say, "That kind of speech, right there. That's tangential." Would she recognize that? I don't know. Could she learn to hone in on a central point? I don't know that, either.

In bed, under my blanket, I told her, "I see it as a signaling problem in your brain."

She really wants to know. She really wants to understand. I've tried explaining in the past and it's been frustrating for both of us.

She mentioned Marfan Syndrome because she now thinks she may be Marfanoid, given her mitral valve prolapse issues. The neuro, who dictates his notes in front of us (which I much appreciate), honed in on that as her chief complaint. The other news to him involved her elevated TSH readings and her prescription for Synthroid -- which he convinced her to take.

My partner thought she could avoid the need for Synthroid by exercising more. The neuro told her that exercise has nothing to do with her TSH level and that she probably has Hashimoto's thyroiditis.

"Okay," my partner said. "It doesn't have anything to do with healing of the ablated toenail or anything like that. Okay. Well, I do have some, uh, I -- I mentioned it to -- I regret not remembering who, which female at this office, and had the impression that she wanted to know who my endocrinologist was, and I said , and, uh, she didn't seem to think much of that."

That, at least, is my partner's interpretation of the staffer's response, which I suspect doesn't match reality.

In the course of the hour-long exam, the neuro said, "Remember these three words: um, umbrella, bicycle, and giraffe. Okay?"

Sitting silently, I pictured this:

umbrellabicyclegiraffe-500
(Giraffe from The Biggest Animals Kingdom, Umbrella from the MOMA Sky Umbrella, Bicycle from Alibaba.com)

My partner remembered two out of the three and claimed she had been distracted. Afterwards, I told her the word she had forgotten (bicycle). She had also tried visualization, but couldn't encode enough in time.

When she counted back by fours from 100, I noticed that she hesitated longer than usual when going from 88 to 84 and from 48 to 44, with some hesitancy going from 68 to 64. When I mentioned that to her after the appointment, she said that she (a) was used to counting backwards by sevens and (b) hadn't expected to have to count down past 50. (Her hesitancy had stopped by the time she reached 28.) None of the other numbers seemed to cause her trouble.

The neuro asked the practical questions as well. Did I hold POA and medical proxy? (Yes.) Did my partner still drive? (Yes, about once a month, and I am in the vehicle with her.) Can she still manage her activities of daily living? (Yes.) And so on.

He asked if my partner was getting disability yet. No, I said, and I gave him the rundown of why not. "The way I understand it is that had stopped working in 2001, and her date last insured was December of 2005, which meant she had been out of work long enough and not earning so that her chance to get disability ran out in December of 2005. And the fact that she had no medical records from the time she stopped working to December of 2005, that pointed to her disability, means that she is not, uh, does not qualify to receive the benefits. Basically, I showed the letter from you. I showed him the letter from . Both were wonderful, and I thank both of you so much for doing that. He said they can't be used."

"So she's not been seeing doctors before 2005?" the neuro asked.

"That's correct. She is -- "

"Gave up?" he asked.

"I felt healthy," my partner said.

I said, "Um, there was a lack of insight into her condition."

"I felt healthy," my partner repeated.

I said, "It's a Catch-22 because part -- "

"I was doing exercise and aerobics and all that," she insisted.

I tried again. "It's a Catch-22 because part of -- my belief is that part of what's happened in her prefrontal cortex contributed to the lack of insight that contributed to the insistence that nothing's wrong. And at that point I did not have POA and I had absolutely no legal standing to do anything. I didn't get POA until 2009."

I handed the neuro the email I'd received from disability lawyer #3.

That was news to him.

He asked, "Can I have this and show it to my attorney friend?"

I wanted to hug him. "Yes...and thank you very much for anything you can do."

He dictated into his notes my partner's inability to get disability "for some arcane reason I don't understand."

He'd prefer that she be on Copaxone, which she doesn't want to take. (The MS specialist we'd seen didn't think it would do her any good.) She'll have follow-up blood work and MRI in May.

My partner asked him if he wanted her to see a neuro-ophthalmologist, since she thought that's what he wanted. It wasn't.

She asked him if she should take ibuprofen daily, just because. (That line of her "reasoning" was news to me.) He said no. But taking it for pain was okay.

He dictated into his notes that she has basically normal balance and is fully oriented, with no incontinence. And that she is also "very tangential, intelligent, has a rich vocabulary, and very evasive answers in terms of the tangentiality....It's difficult to get a solid answer." He again stated that what appears to be her MS coexists with what is likely an "organic schizophrenic issue," and that her neuropsych testing "demonstrates evidence of loss of cognitive function as well as schizo-affective features." He described her mood as "reasonable" and "euthymic" (reasonably positive).

He told me she has a "very complicated presentation."

Yep.

I listen to the drip of rain outside as I write. My partner tells me that the email she got from 23and Me says they've received her DNA sample. They will analyze the drip of her saliva.

I didn't want to rush her or nag her, but I'd been waiting impatiently for her to send her sample in. I was very happy when she did and wonder about the timing. She had opened her DNA kit following the discussion at the MS support group about how no one really knows what causes MS.

The DNA analysis includes disease risk tests for MS -- along with those for Hashimoto's and hypothyroidism, various heart diseases (though no mention of mitral valve prolapse), schizophrenia, OCD, Parkinson's, and Alzheimer's -- though nothing (yet) for Marfan Syndrome.

While we wait for news about her genome, she fills out the various surveys on the site. She tells me she's having a lot of trouble with the one called "Reading the Mind in the Eyes," which measures the ability to sense other people's emotions based on their facial expressions.

According to the description, "The test has been used to distinguish between adults with Asperger syndrome, adults with high-functioning autism, and people without these conditions. Scores on this test also correlate with the number of autistic traits in adults of normal intelligence."

That she has trouble with this test makes perfect sense to me. Before her various diagnoses, I had often wondered if she were autistic, and a friend of mine had suggested Asperger's.

I had answered 30 out of the 36 questions correctly. ("In the research used to validate this test, men and women from the general population answered 26 questions correctly, on average, with a range of 17 to 35. Individuals whose IQs were one standard deviation above the mean on average answered 31 questions correctly. Individuals with Asperger's syndrome or high functioning autism tended to answer fewer questions correctly, an average of 22 out of the 36.")

My partner asked me for help. She wanted to know which emotion I chose for a particular facial expression.

"I'll tell you after you finish the test," I said.

"Meanie."

I smiled back at her. "Yep."

I had gotten that particular expression correct, as had 90 percent of respondents on the site. Fewer than one percent -- the smallest proportion -- had matched my partner's initial guess, which she based, solely it seems, on pupil size. I don't know what answer she finally chose.

She is under her blanket now. She said (after four days of taking it) that the Synthroid makes her feel more energetic. Then she said it makes her feel jittery.

Right now I just hope she's getting some sleep.

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ejourneys

<a href='http://www.m40.siteground.biz/~caregiv6/members/denise/' rel=\"nofollow\">@Denise</a> PS: On Friday we got the name of the neuro's lawyer friend and called him. Alas, what he told us confirmed what we'd been told by disability lawyer #3.

ejourneys

Hi, Denise -- In hindsight, I'd say her behavior first really hit me in 1998, when we had to move. My partner had shut down almost completely, repeating, \"I don't want this to be happening.\"\r\n\r\nI found the neuro by doing a Web search, specifically to find someone who had been trained at Shands, which has a good reputation. Shands itself had a long waiting period.\r\n\r\nI sneaked a look at my partner's results for \"Reading the Mind in the Eyes.\" She scored 23 out of 36 -- one correct answer above the average for people with Asperger’s syndrome or high functioning autism.

ejourneys

Thanks, <a href='http://www.m40.siteground.biz/~caregiv6/members/gail/' rel=\"nofollow\">@gail</a>!\r\nAs long as my partner feels safe and not pressured in any way, she is happy. There are times when she is afraid and worried, like when she thinks someone who has come to the door wants to steal our house. Or when she thinks the neighborhood boys all know she has MS and want to have sex with her, because she read about hypersexuality in MS (a very, very rare condition; loss of libido is far more common).\r\nYears before we met, a friend of hers had given her a little plaque showing a snake, stiff as a board, on top of a round rock, with the caption, \"Relax!\"\r\n(((Big Hugs))) back at'cha. :-)

Denise

Hi EJ--I'm kinda dying to know how your partner did on the “Reading the Mind in the Eyes\" test. :)\r\n\r\nThe neuro sounds absolutely marvelous. How did you find him? \r\n\r\nI, too, wondered if she would hear how she sounds. Meaning, would she recognize the difference in her communication versus yours in the doctor's office? Because it is normal to her, I would imagine it sounds normal to her.\r\n\r\nCan you remind me when you first noticed that her behavior seemed unusual?