One year, two months, and a week

I thought I would do a first anniversary update in April but Doré keeps waiting for the morning she wakes up and says, “Whew, I’m glad that’s over.” Not going to happen quite that way.

Lunch on the Nile with John and Bev

She continues to make significant progress. The left leg is still weak; the foot still drags some; the Wernicke’s Aphasia makes it difficult to process spoken language, particularly in groups; the related paraphasias make it difficult to read and retain anything beyond newspaper level of difficulty and often to find the right word when speaking. Don’t we all? The weakness in the left leg makes it hard to move it quickly, which greatly increases the risk of falling.

She often makes phone calls and understands what the other person says. She reads and discusses the Strib every day although has difficulty making sense of what’s happening in the world. Don’t we all? She walks in the pool about a half mile and around the condo for forty-five minutes every day and uses a stationary bike for half an hour every day, all without the ankle brace. She has made significant progress.

We are staying in a friend’s condo this summer so that Doré has access to the Falls and Pinnacle pool and exercise room. Our intent is to take the 48-state bike ride starting in September. Our concern is not rather Doré will be able to ride the tandem but the process of getting on and off. We may look for a different bike with a lower step-over.

Here is a link to a commentary that was published in the Star Tribune this morning:

We are not questioning the value of the intravascular procedure that Doré had or the quality of the work her team of doctors performed. Our intent in writing the commentary was to emphasize the importance of good insurance (which we are fortunate enough to have) and to highlight some of the factors that are driving the so-called “health care” debate in the U.S.

Our system provided the technology and the expertise to eliminate Doré’s threat from the aneurysms. Even without insurance, she probably would have received the same treatment and care. But without insurance, we would be selling the condo to help pay the half million dollar bill. For the people we have met living with other systems, our health-care is a bigger mystery than our choice of president.



A New Phase

This is the end of this string of posts. Doré still uses the brace on her left foot and a cane most of the time. Her language processing has improved dramatically in the last six months, but there are still issues with processing incoming speech. She still sees the deficits not the progress.

For the current status of our lives, go to our new blog:

As of January 27, we have leased our condo for a year and are about a quarter of the way through our 50,000 km journey around the world, yet to come is a one-month tour of the UK and western Europe and the 48-state bike tour of the US. Maybe 50.

We are not where we’re going, but we aren’t where we were.


Nowhere Near the New Normal

I see progress every day, perhaps not as dramatic as the day Doré squeezed my hand or raised her left arm. But important steps non-the-less. I have no concerns about leaving her on her own for extended periods of time and she wants to do more and more around the condo. Now progress is more doing things more easily rather doing new things.

Her speaking is more fluent and she corrects her speaking errors more often and more quickly. She responds more readily and more accurately to what others are saying. Her writing is generally more grammatical with fewer omitted or misplaced words. She can read and respond to anything that is written and isn’t too long, although she has always complained about my rather convoluted writing style. The speech therapists are beginning to have trouble finding writing tasks she can’t do, once she understands what bizarre game they want to play this time.

Just over a month ago, she was almost exclusively restricted to the wheelchair and had just started using a walker and cane in PT. She hasn’t had a chair since coming home and yesterday, the therapist told her the walker was overkill and she was just using it as a crutch; she should use the cane (or nothing) most of the time. And she should walk faster.

Doré sees deficits. She can’t walk, talk, read, or write the way she used to and she has little understanding of how she got this way. The left hip is very weak, which causes problems with the left leg in general and the left foot in particular. She is uncomfortable walking without a brace on the left ankle, which is uncomfortable in this weather. Having fallen hard once, that possibility is worrisome. Her left foot won’t stay on the pedal and her left knee wants to fall inward on the (stationary) bike  and she is exhausted after 20 minutes. Which is way short of the 30 or 40 miles she wants to do on the tandem. There is also the problem of getting on and off the bike, which we haven’t quite gotten to with the therapists.

While she reads the newspaper, she retains very little (although a little more than yesterday, which was more than the day before) and doesn’t understand what is going on in the world (I’m not sure that counts as a deficit.) But her biggest frustration is the inability to follow ordinary conversation. Not that we make it easy; with four people, there can be multiple (I think there are 11 mathematical possibilities if we allow only conversations with people in the room, which may be unwarranted) conversations going and we change topics willy-nilly and without warning. (The Meads will probably be easier than the Dorés or the political friends.)  She is working on asserting herself enough to let people know that we have lost her (deep down, she still thinks it’s rude to tell people they’re not making sense) and ask that we write down key words.

The long-term problem is Wernicke’s aphasia, which is difficulty processing incoming language. The process she is going through is very much like learning English all over again, associating sounds and pictures coming at her with words and ideas that her brain knows. The region for auditory processing is in the same part of the left cortex so Doré has much more difficulty with spoken language than written. There is no problem with her intelligence or physical aspects of hearing, but most people we encounter casually don’t believe that when she doesn’t respond to a simple request. They seem to think shouting with attitude will help.

I still expect to get some biking in this year (the therapists are non-committal) and we will be on Fred Olson’s ship, the Black Watch, on January 3rd to see the world. Maybe I mean “We shall be on…”

Home Again, June 21 (You may have seen this before.)

June 21, 2016, was graduation day or prison release day depending on who ask. Doré is now at home. She has a walker but often uses a cane around the condo. Still a lot of therapy, seven sessions a week, to rebuild her strength and unscramble her left cortex.

We are now trying to sort out new and old medications, out-patient therapy, follow-up appointments with primary care physician, neurologist, ophthalmologist, optometrist, dentist, and hair dresser, not necessarily in order of priority. Noticeably absent from that list is a neurosurgeon; he is happy with his work and never wants to see her again.

Not to mention verifying statements (“this is not a bill”), invoices, and notifications from insurance companies, hospitals, clinics, physicians, and rehab centers. In many cases, it is impossible to know what is our responsibility and what is someone else’s or what is real and what is fraudulent. Can there be any doubt that universal, single-payer health care would be more efficient, economical, effective, and humane?

Progress Report

Two weeks in the Transitional Care Unit (a.k.a., TCU; a.k.a., short term rehab) of Episcopal Homes, and Doré has made significant progress on all fronts. When she arrived, she could walk 50 to 100 feet with a standard walker with the physical therapist, but needed an assist to move the left foot at all. Now, she no longer needs any assistance to move the leg but likes to have a brace to keep the foot flexed. She should be cleared to walk (with the walker) without the therapist in the next few days. Between PT and OT, she probably walks a quarter mile a day.

When she arrived on May 19, she needed two aides and a mechanical lift to do any transfer. Now she does it herself, including using the bathroom, although that makes them very nervous. Her walking in PT usually includes a few stair steps, with railing.

She does her own hair and make-up, when she is in the mood. Sunday she wasn’t in the mood but was upset that she didn’t have it when eight or ten people showed up with lunch with her. She didn’t however remember that it had been her decision not to do it.

Language has improved by leaps and bounds, which is helping with all the therapies, but there are still significant issues with processing both in and out and responding to requests.

Sunday she read my earlier blog posts for the first time and was stunned that it has been going on for almost two months and by the severity of what she is going through. The psychological issues are boredom, during the down hours between therapy sessions and on weekends, anger about her confinement, and discouragement with the rate of progress. She also tends to be upset when she thinks other residents are not getting the help they need.

Given where she started and where she was just two weeks ago, Doré is setting records with her progress, but it is still frustratingly slow for her.

I expect her to be cleared to walk (with the walker) this week and for us to be trained to do car transfers, which will open up worlds. There is no doubt in my mind that she will get better and go home in a very few weeks. I’m sure she will graduate from the walker and be completely independent within a few months. I expect to be back on the tandem bike this fall and on the world cruise next January.

Although none of the professionals has given us a timeline

Independent, but maybe not driving (but Ron loves to shop.)

Step 4: Episcopal Church Homes Transitional Care Unit

Friday, May 19, one month after all this started on April 19, Doré moved from Courage Kenny (formally known as Sister Kenny) to the Transitional Care Unit (TCU) of Episcopal Church Homes in St. Paul. The official address is 1879 Feronia Ave, Second Floor TCU, Room 222, 55104, but what that means to people on the Minneapolis side of the line is University and Fairview avenues. And there is a LRT stop called Fairview.

The timing of the move was somewhat driven by insurance and Medicare but it worked ok in this case. There is a limit on the time spent in “acute” rehab centers, like the Courage Kenny location in Abbott Northwestern Hospital. “Acute” means, more or less, attached to a hospital and requiring medical treatment or surveillance. Doré no longer needs that and I think the time could have been extended if the doctors had insisted.  “Subacute” is pretty much the same therapy with fewer labs.

Relocations are always difficult but the frustrations with this one begin with, because the move happened at 1:00, she missed the therapy sessions scheduled for Thursday afternoon and of course nothing could happen that day at the new site. And the next day was primarily evaluation. Then comes the weekend with its severely reduced schedule and staff. There was half an hour of PT on Saturday and nothing on Sunday. In the first 3.5 days, there has been about 3.5 hours of therapy.

That is not a knock on Episcopal Homes but an unfortunate consequence of the timing.

The other frustration is getting to know new people. Doré is cognitively alert, follows what’s going on around her, always recognizes old faces (I mean familiar,) appreciates her current situation (appreciates in the sense of “understands” rather than “is grateful for”,) and generates well articulated speech fluently. On the down side, the speech is rarely comprehensible and there’s no apparent comprehension or response to questions or directives. This is more than a little difficult for the therapists and frustrating for the staff, who can seem impatient or annoyed. Maybe when they get to know her.

Since getting here, Doré has on her own just about mastered the wheel chair, which gives her a lot more mobility, which means she can take herself on excursions or to the nurses office when I don’t give answers she finds satisfying. The big challenge for the therapists is the inability to respond to questions and directives. If SLP can get through that, the rest should fall in place. But language processing is in the left cortex and that is where the most damage is.

The big challenge for Doré, other than that language thing, is to get through all the down hours; she can only sleep so much. Visitors are welcome and appreciated (in the sense of “is grateful for”). The therapy schedule seems a little fluid but meal times (8 to 9; 12 to 1; and 5 to 6; also somewhat fluid) are always possibilities for visiting. Or after 6 or on weekends (maybe avoid Saturday morning.)

She will almost certainly smile and perk up when a familiar face appears. But doesn’t respond to questions except nodding, smiling, and saying “Okay.” (Don’t ask any questions for which OK isn’t the answer you want.) The most effective communications are normal conversations about familiar topics, not necessarily addressed specifically to her. She will generally attend to the discussion and perhaps contribute, often appropriately.

While I’m now worrying about Doré running off in the wheelchair, annoying the nurses, and trying to transfer herself (orders say two people, neither of which are me,) I try to remember that three weeks ago I was pleased if she would squeeze my hand.

The Sword of Damocles

With two “volatile” aneurysms in her brain, Doré felt like Damocles; she would always have the possibility that one or both would rupture and there could be no convenient time or place for that to happen. “Volatile” means they had increased in size between the CT scan in August and the one in February and there is only so much you can inflate a balloon or drive on a bad inner tube. Dr. Nagib, the neurosurgeon who drained Doré’s cyst in December, 2013, estimated the probability of at least one rupture at 2% per year or 20% in ten years.

(I don’t think that’s quite right because it treats ruptures as independent events; if one ruptures in year one, it isn’t going to rupture in any other year but it’s a good first approximation for small values of p.)

Dr. Kayan, the interventional neuroradiologist, thought the two percent per year might have been right two years ago but was unwilling to attach a probability now that the aneurysms had been seen to be volatile.

The doctors presented three options:

  1. do nothing now but continue monitoring,
  2. enter the brain through an artery (endovascular)  to place “coils” to block off the aneurysms from the inside,
  3. enter the brain through the skull (craniotomy)  to clip the arteries from the outside.

Drs. Nagib and Kayan both recommended number two, rather than waiting for disaster with number one or opting for the more invasive, higher risk, no more effective number three.

A lot of numbers were bounced around, sometimes ranges but no standard errors. If a cerebral aneurysm ruptures, one-third of the people do not survive, one-third recover fully or nearly so, and one-third are somewhere between. Not very  attractive numbers.

I think I recall hearing: The endovascular procedure is 90% effective, which I think means nine times out of ten it will eliminate the risk of rupture with no serious side effects. Part of the 10% is they’re unable to do the coiling, meaning try again later or try something else, e.g., clipping. .

The primary intra-operative risk with coiling is an ischemic stroke caused by the foreign material being placed in the artery. There was also risk an aneurysm would rupture during the procedure and a slight risk of a hemorrhagic stroke somewhere else in the brain. And as I remember the numbers, Dr, Kayan and his associate Dr. Delgado, who normally work as a team, have done over 600 of the procedures (or maybe that was the number for Abbott or they may be almost the same thing); the ones that weren’t successful number in the low 50s, i.e., less than 10%. Of these, one or two were hemorrhages away from the site of the aneurysm; i.e., two in 1000.

For Doré, it was a no brainer. Fix the problem with as little risk as possible.

Doré knew the numbers and understood them better than  anyone. The brain is enormously complex; so is the body in general. There were no guarantees about how hers would react, even with the least invasive option. Everyone is different; cerebral arteries are messy, doctors are human. Doré made the decision and then asked if I agreed. I did.

The numbers no longer matter: No matter how unlikely, Doré did have a hemorrhagic stroke as a complication of the procedure and an ischemic stroke as a complication of the hemorrhage. She is now dealing with the damage.

One cannot help asking if we made the right choice. We really wish things had come out differently. Doré probably will not fully recover; there is permanent damage. None of this would have happened if we had not opted for the coiling procedure. The craniotomy might have gone perfectly. The aneurysms might never have ruptured if we had done nothing.

Still the Sword of Damocles was hanging there.

We know what we know when we know it. It was the only decision we could have made.

June, 2013

In the beginning, it was an annoyance, maybe a bit more, from a knot in Doré’s left shoulder that neither her chiropractor nor masseuse could untangle. Dr. Olson, the chiropractor, sent her to Dr. Niemi, a neurologist, because neurologists know other stuff and have other tools. Dr. Niemi ordered a CT scan of the shoulder in question. Incidentally, and probably unrelated, she also noted, in a standard neurological screening, a loss of peripheral vision from the right in both eyes.

The shoulder looked fine in the scan; we thought that was good news but maybe not. Incidentally, in the upper corner of the scan, the nameless radiologist thought he saw a cyst, probably benign, perhaps congenital, but he wanted a better look. So he ordered a CT scan of that area.

The cyst clearly was benign, probably been there for a while, and didn’t seem to be causing problems so come back in 10 or 12 months for another look. But, incidentally, while they were looking, they thought they saw an aneurysm in corner of the image. So off to Dr. Kadkhodayan  (since shortened to Kayan because everyone was already calling him Dr. K,) an interventional neuro-radiologist who specializes in arterial vascular malformations, for an MRI.

There were three aneurysms, one too small to worry about and the others appeared stable. The recommendation was to watch every 6 to 12 months in case the situation changed. But, incidentally  so long as they had a new image, they compared the MRI of the cyst to the CT scan from a few weeks earlier. Still benign but larger so back to Dr. Niemi, who called in the neurosurgeon, Dr. Nagib. Because the cyst was now pressing on the optic nerve and was growing, this probably explained the loss of peripheral vision, which was also becoming worse and, incidentally, might explain the knot in the shoulder.

Fourteen days to get off some drugs and on others plus one more day, and she and Dr. Nagib had an appointment in the OR on December 10, 2013, for a craniotomy to drain the cyst. That went well, the peripheral vision was back, the knot in the shoulder was gone, but several months to recuperate and periodic CT scans to be sure all continued to go well. The last, we thought, of these monitoring scans was early February this year.

There was no trace of the cyst remaining but, incidentally, the two larger aneurysms were even larger, considered volatile and dangerous. The options were (1) continue to monitor, (2) endovascular coiling done by the neuro-radiologist, or (3) craniotomy to clip the aneurysms done by the neurosurgeon. The recommendation was to “coil” using the relatively less invasive endovascular procedure, rather than doing nothing or doing the far more invasive craniotomy. That gets us to April 19, 2016, which we thought would be the end of it. A day or two in the hospital, a couple weeks to recuperate, and on the road again.

I haven’t mentioned the ocular occlusions that also happened in the summer of 2013, and left considerable retinal damage and major visual field cut (i.e., blind spot.) And several months of vision therapy with a neuro-optometrist to correct double vision that may or may not have been related to something. And apparently, the ocular occlusions, optic nerve cyst, and aneurysms have nothing to do with each other, except they all happened to be going on in the same head at the same time.

Everything seems to be an incidental finding that would not have been found if they hadn’t been looking for something else. Sometimes it seems better not to know. Some estimates say 10% of us are walking around with aneurysms and never know it.

But once Doré did know it, a sword of Damocles was hanging over her head and that she was unwilling to live with.

A Day in the Life

As soon as Doré moved to Courage Kenny, her days of lying around were over. Her job now is sleeping (not as easy as it sounds), eating (a form of therapy), and therapy (speech, physical, occupational, and recreational.) Breakfast is at 8; lunch at 12; and dinner at 5. Sort of like an all-inclusive resort; everything gets scheduled around meals.

Four areas (PT, OT, RT, and SLP) seem to each get one or two 30-minute sessions every weekday; a little less on Saturday; still less on Sunday although we haven’t experienced Sunday yet. That’s enough to wear out a healthy 13-year-old at summer camp.

The SLP (Speech Language Pathology) therapist is also in charge of eating, which involves swallowing. Doré has now graduated to more or less real food and unthickened liquids, which are the hardest to swallow. (Some of the medicine is also hard to swallow but that’s a different issue.)

As a gross over-simplification, physical therapy (PT) is about walking. Occupational therapy (OT) is tooth brushing. Recreational therapy is board games. The therapists might expand those explanations a little. Everything requires two-way communication like responding to directives and that comes from the SLP therapist.

For Doré, the main goal of SLP right now is responding appropriately, not that she has ever really been inappropriate or unresponsive; too often her response is smiling and nodding regardless of the question. Questions for which the correct response is OK or alright she does really well on; all others are problematic. The first issue is lack of focus. Hence, all of the therapies are slow going. But going.

She is easily distracted; particularly by anything written. And always interested in the newspaper but it is not clear at what level of comprehension. She reads accurately but does not respond to questions about what she has read. When asked by a therapist to do almost anything, she would prefer to read anything hanging on the wall.

But every day, she is better today than yesterday.

For those who were wondering, Homo sapiens are the only mammal capable of choking on food. It is actually rather important for baby mammals to be able to breathe and swallow simultaneously. About three or four months, the larynx in humans moves below where the trachea and the esophagus split so that in Homo sapiens, it is possible for food to go down the wrong pipe. This shift also greatly expands the capacity for well articulated speech. Homo neanderthalensis didn’t have this. But neither does your cat and it also has a significant vocabulary. (I may not have my human anatomy quite right but the idea is right.)