Brain Health

Recounting the Original Story for the Umpteenth Time

Posted on

I have told my story a gazillion times. Well, okay, maybe not a gazillion. But between insurance docs, my docs, vocational and functional assessments for the insurers, therapists, new recent docs, it sure seems like it’s been a gazillion. So you’d think by now it would be no big deal. I could go into some sort of auto pilot mode and recount it like some bored taped recording, disconnecting myself from the memory.

Unfortunately that doesn’t work. Each doc has their own questions about the crash that injured me, their own unique angle of perception, and I have to engage. After today though, if I have to see someone new where there is a possibility of having to recount it, I think I may take a printed copy of my blog post with me, highlight the relevant bits, tell them to read it, and leave me out of it. I’ll tune back in when we get to the questions about my current day problems.

It isn’t just repeating the umpteenth recounting, it’s the having to remember that night, and with that memory comes all the others that followed, like some sort of unstoppable neverending train.

The viciousness of post-traumatic stress disorder is the memory of the trauma coming back into consciousness over and over again. This is similar except that the medical profession is demanding you do it. Insurance companies specialize in this kind of torture.

Those bad memories of the crash and the insurance fight had faded away until these last couple of months, what with seeing new docs and having to wait forever in a waiting room seemingly filled with people recounting their nightmare insurance stories. The fact that everyone who’s been injured and has had to make a claim has the same nightmare doesn’t make it easier to bear — especially when that nightmare is supposed to be over for me.

But apparently like a piece of rotten meat, it keeps coming back on me.

Brain Health

Brain Injury Anger

Posted on

I had a rather heated conversation with my doctor the other day about — anger.

Brain injury anger, to be specific.

It had suddenly occurred to me that since the time of Phineas Gage in the 19th century, physicians and psychologists have known about how brain injury can change personality, including bringing on outbursts of anger, yet in all that time it doesn’t seem to have occurred to anyone to develop a treatment for what I call “brain injury anger.” This is mind boggling because since that time, anger and brain injury have become almost synonymous.

That’s not to say health care professionals don’t try to deal with it. They just go about it stupidly.

The first problem is identifying the anger. I think half the problem with the way the health care professionals deal with anger is that they assume that although an injury has short-circuited something — maybe the control the prefrontal cortex has over the limbic system — that it is essentially no different than someone with an anger management problem. And so they send someone to anger management. Or they figure that methods that work for people with other issues (eg, developmental delay) will work for brain injury. However, what they don’t do is treat the anger. Yet as I’ve met more and more people with brain injuries, I learn that all the strategies and management systems in the world do not work. Period.

Oh sure, we learn to avoid the triggers. But as one person told me, you can’t avoid triggers all the time. And oh sure, we learn strategies, sometimes even develop our own. But what the therapists don’t tell you (maybe because they figure once they teach, all is hunkey dorey, I don’t know), is that strategies work at best only fifty percent of the time. And in the end, the worst part of how the health care professions deal with brain injury anger is that you’re still left with it — for strategies and management don’t fix it, don’t treat it, don’t free you from it. They leave that short-circuit intact, ready and able to wreak havoc in your life whenever you let down your guard.

Peachy.

I tried to describe the anger to my doctor. And the more I tried, the more I realised he was still seeing it as the same as any other kind of anger. Talk about frustrating!

Rehab had taught me about different types of anger. Psychologists apparently categorize anger. Yet they do not take into account that anger that comes with brain injury arises from the injury itself; thus finding the physiological mechanism for this phenomenon and understanding how it works is the key to treating it. You gotta identify it before you can treat it.

Complicating the picture is that the consequences of having suffered a brain injury will create a perfectly natural angry response to a horrendous situation. That kind of normal angry response may be heightened by the injury or dampened, and it may be confused as being the same as brain injury anger when it isn’t. To me, in the early years, brain injury-created anger was about the only thing that gave me the energy to do things and woke up my brain enough to think. I almost saw it as the brain’s way of keeping its thinking ability working. But then the anger settled down to coming and going with a drop of a pin, startling me (and others). It is the kind of anger I feel needs treating because it’s so volatile, so unexpected, so uncontrollable. I’ve heard people throw things when under its influence, get thrown out of places, damage relationships because of it — this in spite of learning and using every strategy in the book. Although my anger did not manifest to that physical degree, it was a huge relief when as a byproduct of my hypothalamus fix, that the brain injury anger disappeared. I was no longer at its mercy; I no longer had to prepare myself for when I knew I would be exposed to triggers. Since the TTC was a huge trigger, I had had to try and avoid it as much as possible. That is no way to become independent. It is not acceptable that in order to avoid the sudden onslaught of brain injury anger, one must avoid the TTC.

I don’t know why identifying and healing the physiological injury that gives rise to brain injury anger has been so sadly neglected in the world of medical research. It’s been a century and a half after all. What have the researchers been doing all this time? Talking to themselves, not understanding how awful it is for the patients, is what. It’s time for that to change. And it’s time for people with brain injury to demand real treatment, not put up with half-assed strategies that should only be a stopgap while treatment takes effect, should never be considered a permanent solution. Because strategies aren’t.

Brain Health

Does a National Strategy on Mental Health Have Any Meaning in Canada?

Posted on

The Mental Health Commission of Canada has released its National Strategy report. It took them five years to compile and write it. I understand that they had two Chairmen — the original one resigned. I’ve heard several interviews with the second Chairman, a physician, and the original Chairman, a Senator, and I caught a snippet of the original press conference when they released their strategy.

I have no idea what this all means.

Health is — stupidly — a provincial issue. I can sort of see why different provinces may want to educate their subjects, I mean people, differently. But last I saw, human beings who live in Ontario are biologically, physiologically, and anatomically the same as those living in Alberta. But we seem to believe a doctor trained in Saskatchewan won’t know how to treat human beings living in Québec. Or that human beings living in New Brunswick don’t suffer from the same diseases or need the same kinds of treatments as those living in British Columbia.

I don’t know what our Fathers of Confederation were thinking when they made health a provincial responsibility.

In spite of how this illogic treats Canadians unequally and in some cases disastrously so, provinces are jealous over health. They don’t want to share it with the federal government. It’s okay for the federal government to give them money to spend on it, and maybe it’s okay to have national medicare rules about who can pay for what, although that’s changing after the Supreme Court ruling, but they don’t like the Feds telling them what to do with the money. If province A wants to spend it solely on cancer, and province B wants to spend nada on cancer but only on heart disease, then they get to do that, and the Feds can’t do anything. Or don’t, for fear of treading on toes.

It’s all about power. Not about the overall health of Canadians.

Yet here we have a national strategy on mental health. Yes, Canada was apparently the only major nation without one. But we also don’t treat health as a national responsibility. Since when are the provinces going to harmonize their approach to mental health — or physical — so that an Ontarian suffering from major depression can know that if they move to Nunavut they will receive the same treatment, the same level of care? Since when will the Federal government ensure the same level of care is not less than the minimal in any province or territory? Since when will the provinces give over any power so that a national strategy on mental health really is national?

In one interview I heard the Chairman say that different provinces will implement the recommendations differently, depending on what they do now, the implication being that at the end of the day a Canadian can live anywhere in Canada and know that they will receive the same good care. Hardly. I can’t see that happening? Can you?

No, a national strategy only has meaning in this country if Canadians challenge the provinces over their absolute power over health and demand that health be national, that a doctor licensed in Nova Scotia can practise and prescribe in Manitoba, that a Yukoner has the same access to a GP or psychiatrist as a Newfoundlander, that treatments in whatever form they come in are covered equally across the country from coast to coast to coast.

Brain Power

What is Good Standard of Health Care?

Posted on

Standard of care. It’s a phrase that gets tossed around a lot. Let me tell you a story about what it should not be, especially for a person in a drug research trial.

Before I begin, a note on my background. I grew up as the daughter of a clinician-researcher who is to this day, in his so-called retirement, in demand around the world, whose patients think he walks on water, and who has never in his entire academic career been denied a research grant (see my page on him, a bit outdated because I can’t keep up). During my university days, I used to talk to him a lot about research work, medical care, medical education. It never surprised me when he’d come home excited about some new research finding – and not just in his field or from research done by himself. His curiosity just about matched my own. I also wrote a book on Judy Taylor, the patient who launched his career into the stratosphere and who demanded all his skills as a researcher and physician to save her life and to give her good quality of life. So I know what good standard of care is.

I have a brain injury. Since the brain controls the entire body, mind, and emotions and since we know little about brain operations, caring for me is complex. But good standard of care even for someone like me is not.

I met a new specialist a little over six weeks ago. Seems like forever ago. He enrolled me immediately into a research study as he believed that the research drug would decrease my pain and so improve my sleep. I have pain from many sources, including fibromyalgia and the lingering effects of the seat belt injuries I sustained (again) in a three-impact car crash back in 2000 (the same crash that gave me my brain injury). The hypothesis made sense to me, and having conducted or been involved in a few research studies as the researcher, I was game to be the guinea pig for once. He sent me to his research team as they would instruct me. But he was in charge and would keep in touch with my progress through them. And I was given another appointment to see him end of May to follow up on all the tests and study results.

The first week was baseline week. Tedious but necessary. The second began the drug trial itself. I saw the research team each week as the dosage increased up to the highest dose. I have no idea what the highest dose is, or rather was. Every day I had to phone in a 24-hour diary on my pain, fatigue, and sleep. As I understand it now, the crucial parameter was my pain level over the previous 24 hours. Every evening when I took the drug, I had to fill in a paper diary, noting the time, which bottle(s), and when in relation to supper, snack, or breakfast. I was a good girl. I took my drug as instructed. Each weekly meeting was slightly different, but they always covered off two things: suicide ideation and/or actions and side effects. Apparently the suicide thing is de riguer for any drug, no matter how unlikely it was to cause suicide. I worried about it in the beginning, but as I got used to the process and the drug, I forgot about it.

Once I was stabilized on the highest dose, I went for three weeks without seeing them while still keeping all the diaries and taking the drug daily and wearing my Actiwatch, butt ugly thing that it was.

I wasn’t really feeling any different as the weeks went by. And then all of a sudden, things changed. But not the things the researchers were looking for. Problem number one for me.

They wanted to know about pain and sleep. But it wasn’t my pain and sleep that had changed dramatically, so dramatically that even my parents noticed. So dramatically that when I brought it up with my parents to discuss what I should do as today approached, they said categorically that I should not come off it. As I mentioned above, my father has conducted many research studies, many that involved his own patients. He knows the drill. He indicated that a patient knows when a drug is having an effect because it’s obvious to the patient. He’s seen and heard about it lots of times. Was it obvious to me? Yes. He indicated that his patients have been able to speak to him about what to do when they don’t want to come off it. And he explained the kinds of options available to someone like me when a drug is not commercially available.

So I called the specialist’s office last week to talk to him about the changes and about my options. Burgeoning problem number two for me.

The specialist wasn’t in. The specialist was busy. His assistant would let him know I’d called, and she suggested I try again on his patient day or I could fax a note. I’d learnt from previous experiences with others that faxing notes gets me nowhere. Physician reads it (maybe), files it, doesn’t talk to me. So I called again on his patient day. Gave my cell number. Ensured I was available to take his call anytime that day. No call. Friday I was at the hospital. I tried doing the really annoying ambush thing (but to be absolutely honest, another specialist had suggested it since time was ticking down) and asked him politely for two minutes to discuss what to do as I could not come off this drug Tuesday. The changes were too dramatic, too important to my quality of life. I didn’t get that far. He looked peeved and interrupted me. Well, okay maybe he was having a bad day and obviously stopping him in front of his office would not be the happiest moment of his life. But he hadn’t called me back.

Let’s talk about that for a moment. Physicians today do not call patients back because OHIP doesn’t pay them to. Medicare used to pay physicians and surgeons to telephone patients because the bean counters understood phone calls were part of patient care. But no longer. I had heard that if a patient initiates a call that OHIP will pay but don’t quote me on that. So if a physician calls a patient today they’re doing it pro bono, and they’re doing it because patient care is that important to them. To compare: lawyers don’t even talk to clients for five minutes sans billing them, and lawyers can have as big an effect, if sometimes not bigger, on a person’s life as a doctor can. However, I’m not just a patient, I’m a guinea pig. In a drug trial. For a drug that’s not commercially available. It doesn’t matter whether or not it’s derived from one that’s out in the marketplace, they still don’t know its full effect. Thus when a patient-guinea pig calls saying that there have been dramatic changes that have affected internal body functioning and cognition, it’s important from both a clinical and research point of view – and most of all for good patient care – to take the effing call.

He agreed to speak with me after his meeting. I stared at posters in the waiting room, made queries about an advertised non-drug research study (I need money), and was finally called in to “discuss” it with him. He’d spoken to the chief researcher about my changes – who, by the way, did not know about them all to say the least, but neither the researcher or the specialist knew that – and to his assistant – who also knew only some of the details – but he didn’t speak to me. And so he knew only part of the story because I was waiting to speak to him to tell him the discreet details. I didn’t feel like bandying them all over the place. I’d had enough of that during my insurance fight. The two people he spoke to were also unaware of my financial situation, and not being my physicians they didn’t understand how much this drug was changing my life. Problem number three; blew up in my face today.

After speaking to them about my situation and only them, he told me that I would be enrolled in the second half of the trial, that if I was enrolled in the placebo portion and after a couple of weeks didn’t feel too good, they’d discuss what to do about drug options then. It’s the best way. Bye. What about the changes? Have you seen them before? Bonus. Bye.

To recap: zero discussion with me, the primary source, about my pain levels, dramatic changes, staying on the drug, and taking and paying for its approximation.

Today, the computer told the researchers I was ineligible for the second half of the study. Big surprise. Well, it seemed to be for them. Not to me. I knew what my pain levels were. I knew that once I was no longer reminded of being in pain every verse end, I’d go back to my ignore-it-and-it-will-not-interfere-with-my-life attitude, which would not actually drop the pain levels in my diary entries enough for it to show that the drug had affected them, if you follow that. So I don’t know why they were so sure last week I’d remain in the trial. They could see my diary entries in real time, but I guess they’re not good ballparkers whereas numbers being my friend and having saved my ass many a time since my brain injury, I’d sensed it.

All of a sudden, they had to figure out how to meet my needs. They had to figure out how to get a prescription for a commercially available approximation of what I was one from the specialist. They said my pharmacist would explain to me how to take it. I said point blank how about discussing it with me now. I mean seriously, since when does a physician not discuss a prescription with their patient? They couldn’t, only the specialist could, and after awhile it became apparent, he would not be available for some time, like, hours and hours even though last week I’d received the impression he would be reachable. Well, what does it cost? Oh, no worries, insurance will cover it. I pointed out I didn’t have private insurance. Did the Ontario Drug Benefit Program or Trillium cover it?  That threw them for a loop. I’d have to ask my pharmacist, they said. What do I do if I can’t afford it? Well, I was on the tapering dose since they couldn’t get me a prescription right away anyway, that would hold me for awhile. (Like, for barely a week. Maybe.)

So I trooped off to my pharmacy. The drug is not covered by any Ontario drug program for anyone at any dosage. It should be, maybe it will be, but it isn’t. What would it cost me? Well, that depends on the dosage. A bit of a problem there. The research team hadn’t told me the dosages of the research drug; had refused to discuss the prescription with me; the specialist had not yet written it; and I had no clue. So we played with some numbers. I thought about what I could give up after I heard the dollar figures. The pharmacist suggested asking for compassionate care or use whereby the pharmaceutical company would provide me the drug gratis. She explained that the specialist has to apply and how it would work in practical terms. Problem number four.

Last week I was upset, worried, stressed. This week I’m mad. This is how the problems that arose for me translate to bad standard of care:

Problem number one:

Bad or what-has-become-acceptable standard of care is that when a patient says they are experiencing changes different than what is expected – ignore them.

Good standard of care means that when a patient indicates that a drug is affecting them differently, you discuss it immediately, not at their next appointment time. You discuss it so that the patient first and foremost feels safe because a drug can be a dangerous thing and the patient needs to know the clinician researcher has their back. You discuss it also so that you can learn from it, think about how that patient differs from the other guinea pigs, and most importantly, how best to help the patient so as to maintain and maybe even improve on the good changes. The patient’s health is top priority.

Problem number two:

Bad or what-has-become-acceptable standard of care is that when a patient-guinea pig calls, you don’t return their call because it is protocol to speak to patients only during scheduled appointment times. Then be impatient with them when they do whatever they can to get your attention because they’re that desperate.

Good standard of care means that when a patient-guinea pig calls, you return their call as soon as possible because even good changes require immediate attention to ensure the patient is not hiding side effects or is not at risk of unforeseen consequences. And if they button-hole you because you didn’t call back after their repeated calls, realise it must be really important to their life and health and well-being for them to make that extra effort. You listen; you discuss; you reassure them.

Problem number three:

Bad or what-has-become-acceptable standard of care is that when a patient-guinea pig tells you that they don’t want to come off a research drug, you don’t discuss the financial details, figuring it’s their problem not yours or you’ll deal with it when you must.

Good standard of care means that when a patient-guinea pig tells you that they don’t want to come off a research drug, you discuss what is available and ask if they have insurance. You know all about how lack of money stops treatment; you’re aware if the drug is covered or not by the Ontario Drug Benefit Program or Trillium so that you don’t send them haring back and forth between the pharmacy and hospital just to figure out how to pay for it. Even better you’re willing to discuss these things over the phone. You appreciate it when a patient has given you notice so that both you and the patient have time to find out how the patient will pay and if they need you to fill out an application for compassionate care.

Problem number four:

Bad or what-has-become-acceptable standard of care is that you’ll be caught unawares by the patient’s need for financial help and refuse to discuss it outside of scheduled appointment times, long after the research drug has left their system and they have gone back to their sucky pre-drug quality of life. Stress them too so badly that no amount of Valium will relax them.

Good standard of care is that you’ll have discussed it when the patient called in advance of the study possibly ending and be ready to resolve this problem expeditiously, or if not, to be available when the patient needs to discuss what comes next, how it works from your point of view, how long it will take. In short, make the patient feel safe, assure them they have a partner in their care and are not alone, and that things will work out. Most important: shorten their time off the drug as much as possible.

To sum up: good standard of care is predicated on a physician being able to think laterally, vertically, diagonally, sees medicine as an art not strictly a science, sees the patient’s health as the highest priority, and appreciates a patient involved in their own care. One of these days I’ll receive good standard of care. But as of now I’m on the tapering dose.

Update 19 April 2012: A go-between asked the secretary to have the physician write a note to the drug company asking for a compassionate supply. I was told to followup this morning. Bell helped. They invented call blocking. It’s the ticket to having one’s phone call answered. Did the physician not give the prescription? Nooo. Long hold. Click. The physician came on the line. Whoa. That threw me. Then I heard:  “you think you can’t afford the medication.” Excuse me? Think? Really? I had no idea I knew so much less than he about my finances. Still, he would graciously write a letter to the drug company though they, of course, would not supply me. And he would immediately telephone my pharmacy with a prescription. As in right now. Maintenant! But — I must not call his secretary more than once a month. He was insistent on that. I thought: why would I, I finally got him to listen and act. I said: he had assured me support. And then my Parsi side kicked in, and I made nice murmurings. I wanted that prescription. Given what he’d said about the multinational drug company, implying they would be a pill, I assume the letter will be perfunctory. He left me and the pharmacist to confer on when to switch from the experimental drug’s tapering dose to the prescribed established drug, how the established drug stacked up against the experimental one pharmacologically speaking (flip open books, get out the old calculator), what side effects to watch out for, how to monitor my symptoms and titrate the dose up. Nothing like a patient and a pharmacist discussing how to switch from an unknown drug to a known one to make a pharmacist’s day interesting, I bet.

Brain Power

Support Gives Life

Posted on

An elderly gent said to me: you look…you look alive!

This gent has known me a long time, starting in what I call my hell years after I had suffered a closed head injury aka traumatic brain injury. Back then, I used to see him weekly, yet when I spotted him one time in a different place, I recognized his face but could not remember his name or where I knew him from. Slowly I improved. And last year, he told me how much I’d changed since then, how I’d come alive, how I was alert, how happy he was for me. But early this week he was astonished to see something dramatically different in me and had to come up and tell me about it. He didn’t have the exact words, but it had captivated him and “alive” was the best way he could describe it.

The next day, my father commented that something had changed. He thought I was calmer, but I had been calmer for awhile (it had begun after I instituted my “hypothalamus fix”). Still, it was a close descriptor, I think, to what had happened.

The next day, a woman who didn’t know either man, said the same thing. She too said she’d seen me come alive slowly over the past several years. But this week, something different, something dramatic had happened. She too was excited to see it.

One person wondered if it was the new research study drug I was taking, the one the new sleep specialist had recommended that is supposed to reduce my pain and improve my sleep. But this drug is supposed to take awhile to take effect, my pain and fatigue levels are the same as usual, going up and down as usual, and as of when the elderly gent saw me, I had been on it only a few days. Plus the change had begun before I was even given the study drug. I had said to my acupuncturist last week, for the first time ever, my mood is OK. You don’t have to treat it today. And she concurred. She treated my pain and fatigue and suggested a longer interval between appointments.

What an amazing, dramatic improvement that even I could feel it.

I believe two things happened that made the change in me.

When I conducted my research for my book Lifeliner, I realised that Judy Taylor had survived and thrived for twenty years without eating for four big reasons, two of which were support: medical team support and family support. Of course, for Judy medical team support was vital, for without it she would die. Still, many people on TPN (total parenteral nutrition) today mayn’t be able to get a hold of their doctor outside of office hours and be forced to go to emergency if they have a problem, where they’d have to suffer delayed treatment while they explained their artificial feeding and the special requirements it entails. Not very supportive. Judy never had to worry about that. Whenever she was in trouble, she knew that her doctor, my father, had her back. It would be him she called, him in the emergency room seeing to her care. And then there was her husband. She knew with no doubt whatsoever that he would never abandon her, no matter the cost. In an emergency, she could count on him immediately zipping her down to the hospital; in daily life, she didn’t have to worry about being taken care of financially or about having a solid roof over her head. That kind of unquestioned support makes life possible and makes one feel loved, no matter how much the body is scarred and infirm. And so I knew how important support was to health when a person has a chronic illness or injury.

That’s the two things that changed for me.

1. Medical team support: I finally found last year and was able to secure a spot with a psychiatrist (whom I shall call “neurodoc”) in Toronto Western Hospital’s acquired brain injury neuropsychiatry clinic. One of the first things he said to me in the Fall with great firmness was that I could see him for as long as I needed. There was no end date. I understood with my head, but it was not enough for me to accept. You see, the best of my doctors had not stuck with me. They took me as far as they could go then discharged me, for curiosity and acquisition of knowledge to treat my particular pantheon of injury sequelae was not in their cards. Most doctors though told me “this is what I think, bye,” with what they “thought” not being very helpful to me. This month I saw the sleep specialist my neurodoc had referred me to. It was a case of I will believe it when I see it, that I believed that the referral was real. Then when I actually saw him, he emphasized at least twice to me that he would not usher me out the door if he could not solve my insomnia. He said he would support me and gave evidence of how he does support his patients, how persistent he is, how he doesn’t usher people out the door. For the first time in years and years, I felt supported by a medical team – my medical team of two physicians. I relaxed. That’s why I say I don’t think it was calm my father saw – it was relief. And it was relaxation. I no longer have to keep a vigilant eye on my health, to monitor the effect of any treatments or diet or exercise changes, to scan daily my Twitter feed or articles that come my way for solutions. Two shrinks are now taking care of that for me. Not in all areas, tis true, but in enough that it’s an humongous relief. Amazing relaxation.

2. Family support: For several years — except from every professional I saw for my health care (not insurance), whether therapist or psychiatrist — I heard without fail from most everybody in my life that I was malingering, that I must get over it, that I must move on, that I was depressed, that I was wasting time on health care instead of working. The insurance company and almost all of its hired medical mouthpieces (oh sorry, maybe I should have said independent medical experts) labelled me with anything that they could get away with – until my lawyer and proceedings debunked them, in which case they moved on to another label, except the true one: closed head injury. It was so bad that even though every professional who diagnosed and treated me said it was so obvious and I was so typical in my symptoms and functional problems that I had had a brain injury, I began to take on that malingering label. And it stayed plastered to the walls of my psyche. And then my neurodoc invited my mother to an appointment and asked her if she thought I exaggerated my symptoms, my pain and fatigue. She said “no” so quickly, there was no room for doubt. In that answer, for the first time, I had heard a family member say out loud I was truthful, that my symptoms, my functional problems, my difficulties were real, that I was so not a malingerer. I was the opposite. Saying it out loud is like shouting compared to the whispers of slowly evolving actions and email. The chains around my heart released and fell off with a clatter. The burden on my shoulders rolled off and disappeared into the maw from whence it had come. My muscles unclenched from their permanent defence against years of accusations.

That release is what everyone saw so clearly in my face, my posture, my walk, my health. Support is essential. When you withhold it from a loved one – and a patient when you as the physician make yourself unavailable or usher your patient out the door because you don’t want to think outside the box and extend yourself – you condemn the suffering person to carry a burden they can never lift off of themselves. And that burden retards healing.

Brain Health

The Sleep Study

Posted on

It’s me and the men. Fat men. Snoring men. Young men. And extremely picky men. That latter is a new one to me in my five (six?) sleep studies. Seriously, does this guy think a hospital is going to purchase his preferred kind of sheets just for him? It’s not like in the pre-bed bug days when you could bring your own special pillow, Teddy bear, towels, even sheets. Now the sleep lab provides everything, and the only thing they want you to bring are your pyjamas and hygiene products. They don’t even want you to put moisturizer on your face. Or gel in your hair. Or mousse. Or hair spray… These last are not because of the bugs but the electrodes.

Then there are the pyjamas. Maybe what’s seen in the sleep lab should stay in the lab, after all I always take my most warm, utilitarian pyjamas in my closet to the lab. Some men, uh, don’t. And most don’t wear anything over theirs, no matter how skimpy. Personally, I like a dressing gown, an extra layer of modesty. Unfortunately, it comes off as soon as one sits down in the control room for the pasting up. More on that later. But first: what am I talking about?!

The sleep study.

The sleep study is inevitable once a sleep specialist comes into your health care picture, whether you’re just an insomniac or having sleep problems as a result of a brain injury. In Ontario, OHIP will pay for a sleep study once every two years. The sleep study records your brain waves (EEG), your heartbeat and heart rate (ECG), your leg movements, your body positions, your breathing during your entire night-time (and sometimes daytime) sleep. It also includes a video and sound recording of you. It gives the specialist an objective picture of exactly how you sleep, notwithstanding the huge distractions in the process. No one ever prepares you for the experience, so I hope this will shed some light.

After checking in at the lab, I discuss my bedtime with the sleep tech. I tell him the time I usually go to bed and usually awaken. Oh no, not enough time to get a proper study, he replies. Not enough time to get proper rest either, I grumble to myself. He talks about using alarms at home inappropriately; I reply I don’t use alarms, and still I awake too early. He doesn’t get it. Someone should tell my brain, see how illogical you are waking me up so early! He tells me I’ll be second to be prepped for bed, and that’ll make lights out for me at 10:30 pm, about an hour before my usual time. The person before me will be lights out at 9:30 pm, or so that’s the theory. This is picky man, and he yaks on the phone instead, pushing mine, and the ones after me, bedtimes back. But I digress. The only other difference to my routine are the electrodes nestled in my hair, glued to my scalp and forehead. I’ll be allowed to wake up naturally. This is new. The thing I never like about these studies is they shock you awake and kick you out while you’re still half-drugged from sleep and the city is just wakening. But I’m ready this time. I’ve prepped my mind. But turns out: I needn’t have. So will I wake up at 5:00 to 6:00 am like I have been for the past week or will this be the day my brain finally decides it wants to sleep to a normal hour?

I ask the tech about snorers. My last study had the worst snorer. He was so loud, I heard him clearly through his door, the intervening control area, their door, the little hallway, and my door. They shut all the doors they could. No good. Guy was married too, I believe. If I’d been his wife I would’ve bought a separate house on the other side of town to sleep in. Luckily, this time it’s all insomniacs like me. They may snore but probably not loudly. The tech offers earplugs. I decline. I have faith in a snore-free night.

After filling in questionnaires and spending seconds checking out one’s designated bedroom, the next step is changing into one’s pyjamas. I must say I don’t like changing in a room with a camera staring down at me even though I know the camera is off (well, it’s supposed to be). I used to be able to stand behind it, but now they have those 360 ones. No hiding. Bathroom is safe though. Oh wait…inspect camera closely…it’s still only unidirectional! It’s aimed right at the bed. And there’s that nice blind spot underneath and to the side of it. I change in the blind spot with the door shut. You’d think shutting the door would be the obvious move. But there’s usually an exhibitionist in the bunch. Picky man is tonight’s and so oblivious to my presence he changes with the door wide open. I avert my gaze. He steps out into full view. Good grief, I really need shades for those pyjamas. Anywhoo…I’m second in line to be gooped up. That’s always my favourite time. Sit still as electrodes are glued on, my hair is totally ruined, and gossip with the lab tech — who’s almost always male; females if there are any are usually walking about doing stuff; but tonight there’s only one tech in this lab.

The sophisticated sleep lab I walked into when I first arrived on the Sleep Clinic floor has women behind the controls and ushering the guests to their rooms, handing them their questionnaires to fill in immediately. The control room looks like something out of a television show with its modern monitors and dark-tinted glass windows. How come I can’t be there? That’s where I was first going to go until my new sleep specialist amended the sleep study requisition form after he enrolled me in the research sleep study. So I get to be in the side wing with its pokey control room and in the bedroom with a picture of a foot in it and pasted-up warnings about bed bugs. Who thought that would be restful, the foot splashing on a pond with reaching tree branches? Or the warning?

My first sleep study experience was quite different. A beeping O2 sat monitor disturbed my sleep in my first study until the tech removed it. That was in the old sleep lab at the Western in the hospital proper. It was sound proofed like a sound studio. You walked in, and it sucked the sound out of your ears. It was grey too and separated completely from the rest of the floor. The EEG readings were recorded with flailing needles on paper unfurling across a wall. In contrast, the last two sleep labs had windows. The street sounds through their windows and, at one, streetcars clanging by, were rather disturbing. But nothing competes with the snorer. There’s always one. But back to the labs. These labs, main and side, are on their own floor tucked in a rabbit warren of rooms and halls. No windows to let in street sounds. Thank you Lord. Computers record the EEG and heart readings. The rooms are hushed, but sound carries in the air like normal, which makes it easy to eavesdrop on the convo between the tech and picky man while he’s being strapped and gooped up. Hey, a gal’s gotta do something when she didn’t think to bring anything to read because in the last few studies there was no time to read.

It’s my goop-up, I mean, paste-up time. First the tech measures my height and weight and neck circumference. Then blood pressure. Luckily one doesn’t need to take one’s sleeve off (which would mean removing the pyjama top; normally the BP cuff goes round bare skin).  And then the fun begins.

The tech asks me to hold out my arms; he wraps and clicks into place a soft black strap round my chest and tightens it. This one is more comfortable and sturdy than ones I’ve had in the past. He then wraps a matching strap round my waist. They will measure my chest and abdominal movements. Now the worst part: he places on my face a double form of that oxygen tubing lung patients wear, hooks it round my ears, and tightens it under my chin. One breathing monitor measures pressure as I breathe in and out; its prongs reach into my nose (oh, yuck and ticklish). The other is a nose-wide bent red rectangle, which measures temperature and temperature changes; it sits under my nose. He tapes the tubing to my cheeks so it won’t slide away from underneath the nose during sleep. But the prongs still move every time I flip over. Talk about a sleep disturbance. The electrodes are innocuous compared to that!

The tech has a cart with everything ready to paste on. He asks me to sit down next to it. I see about nineteen squares of gauze with a blob of paste centred on each lying ready for me. He places one on the middle of my forehead, pressing it into place with the palm of his gloved hand. He presses one each on my temples beside my eyes, one on each side of my jaw, midway between the jaw angle and chin, several on my head, parting my hair to get contact with my scalp, one on each side of my neck at the back base, and two more below and to the side on my deltoids (my upper back). These last four are how they measure heart rate and beat in women. No ECG electrodes on the chest for women. Good thing as almost all the techs who’ve pasted me up are men, and modesty is already in short supply when sitting there in one’s pyjamas.

He lifts up a tangle of very thin, coloured wires. At one end of each wire are yellowish plugs that look like laces that have been fused closed with a lighter; at the other are tiny metal circles: the electrodes. He attaches all but four of the electrodes to the paste on the gauze squares on my head and neck. He hands me the last four wires, two at a time, asking me to thread two down my right and two down my left pyjama legs. He plugs all the fused-ends of the wires into a purplish rectangle box, except for the leg wires, clips a strap to the box, slips the strap round my neck so the box dangles down my chest, and hooks the leg wires and tubing though my chest strap. Time for bathroom and bed.

Lie down on your back on the bed with its two soft pillows (two! Luxury! Last time I got one small pillow), not-tucked in sheets, and light coverlet; have a man loom over you as he takes the box off you, plugs it and the tubing into the equipment next to the bed, and places it on the bed near the edge; sacrifice your left forefinger to an O2 sat monitor that is clipped and tightly taped on; thank the techie stars that the O2 sat monitor is much smaller than the behemoth used twenty years ago; wait patiently as the leg electrodes are pasted and taped to one’s calves then plugged into the box; wait for the sleep tech to return to the control room then obey the spoken commands coming through the intercom for the calibration session; watch as the tech searches for the problematic connections, tapes them, and pulls the stomach strap down so that it is over the belly properly; finish calibration; watch as the tech turns off the light; get blinded by the red spotlight of the O2 sat monitor as move hand into field of view; lie on side, feel nasal prongs move in nose, get blinded again by that red spotlight, tuck offending hand under pillow, be very aware one is being watched and listened to, and wonder:

How the hell is one supposed to sleep?

For a very dark room (no windows), there was an awful lot of light once my eyes had adjusted to the blackness. There was the thin space between door and jamb through which light seeped, and there were two inexplicable rectangles of faint light on the ceiling above my head. There was also that damn red spotlight that shot into my eyes like an alien probe every time I shifted position and moved my left hand in the process, always accompanied by the prongs moving against the inside sides of my nose.

I didn’t sleep.

Well, I’m sure I did because I awoke with a final snap at about 6:10 am, after several awakenings, to hear the gently happy snoring coming through the wall from the next bedroom and because the tech commented on how long it took me to fall asleep and asked me if it always took me that long.

And that’s when I realized how effective my AVE unit is for getting me to go to sleep and stay asleep. Even though the nasal monitors interfered greatly, the lack of sleep and time to fall asleep wasn’t that different from how it used to be before I began using my home AVE unit. It was my sleep in the raw sans aids. God, how did I survive without my unit all those years?!

Anyway, he asked me to stay in bed on my back. The others in previous sleep studies removed all the stuff in the control area or room, but he did it while I remained in bed. After unplugging the box, thankfully the first thing he ripped off was the nasal monitors. He threw a 3-pointer side- and backwards into the garbage bin. Good to know for hygiene reasons the nasal monitors and tubings are disposable. My chest strap had slipped down but everything else had remained in place. They were all soon off. Last time, the tech used alcohol to remove some of the paste in my hair. Most don’t. This tech didn’t. He then handed me another clipboard of questionnaires. I ticked through them quickly, eager to get out of there.

The penultimate step in the sleep study process is the shower.

They provide a shower. But I prefer to use my own. It means looking rather like Frankenstein out in public. A hat that comes down to the forehead and is washable is a must. The provided washcloth and their tepid water can remove the paste on the forehead and any tape remnants but not from the hair.

At home, ensure your hot water tank is full and ready. You’ll probably drain it. You’ll need hot water to melt the paste, otherwise it’ll take much longer to remove. If you’re bald or have a buzz cut, this process will take five minutes or less. But for everyone else… I’ve tried many methods. The alcohol certainly helped but didn’t do even half the job. I first massage in a large blob of shampoo in. Don’t bother. Instead, take a big bar of soap, and while standing underneath the hot, running water, push the bar against the paste, like one pushes air bubbles out of wall paper or out of an iPad screen protector. After one blob of paste comes out, move to the next. Or, if you’re like me and get bored with one blob, move on then come back. The paste at the back will be harder to remove because it’ll be buried in more hair, especially if you have long hair. Once you think all the paste is out (it won’t be), massage in a large amount of shampoo then comb it through. Rinse with hot water. Repeat with conditioner. Comb that through too, this time with the fine teeth. Rinse with hot water. Using this method, for the first time, I didn’t discover bits of paste in my hair once it had dried, and I didn’t need a second shampoo. Now commence with your usual shower routine and soothe your scalp with cool water.

The only other addition to the process is cleaning every fabric thing you took to the sleep lab. Given that bed bugs are rising up again and you don’t know who you’re sharing the lab with, it’s only prudent. Toss them all in the washing machine, including your clothes, as soon as you walk in the door, before showering.

Last step: flake out.

Brain Health

The New Sleep Specialist

Posted on

A new year, another new doctor. The first thing my new specialist said as soon as I sat down was: I know what your problem is. Pause. You have physician fatigue.

No kidding.

Astute.

I don’t recall another doctor noticing that on their own or, if have, acknowledging it openly to me. I immediately paid more attention to this sleep specialist, this new one I had been referred to because my new neurodoc had found it unacceptable that my last sleep specialist had stated that there was nothing he could do for me then ushered me out the door sans support or options.

But what could a new sleep specialist do? I had not developed any new problems. My fibromyalgia was as it had been since being reawakened at the time of my closed head injury; my brain injury had healed some in the years since 2003 and had not created new sleep issues. When the new sleep specialist asked me what he could do, I replied that his mammoth sleep questionnaire gave me hope that if there’s that much progress in discerning the issue, then maybe in treatments too.

He told me a little story, the first of a few, to illustrate he understood my physician fatigue. He told me another little story to illustrate that he, regardless of outcome, would support me. He would not usher me out the door. He repeated that twice, thrice. Not even if there is no solution for me. As proof: he runs a weekly support group for people with chronic sleep problems and has done so for eighteen years.

He doesn’t give up on his patients.

The neurodoc told me the same thing a few weeks after I began to see him. They both needed me to hear that because they must’ve seen how I expect physicians to dump me, to discharge me, to not pursue options and work with me on solving my myriad health problems stemming from my brain injury (and my fibromyalgia too apparently) – for that’s pretty much what’s happened to me. The best ones take me so far and then discharge me and leave me to cope and solve on my own. The worst… Well, it’s why I searched and searched for treatments and found the ADD Centre; it’s why I created my hypothalamus fix. It’s also why I ended up in the ER back in 2007. A person who has health problems can only support themselves alone for so long before the body screams bloody murder, revolts, and flings you into the ER or psych ward.

The new sleep specialist asked me to stand up, stood up himself, edged round his table and stacks of papers and journals, bent my right arm, and pressed on the fibromyalgia tender point. I yelped. I jumped. But I somehow didn’t leave his grasp. I guess he’s used to that reaction. It had been so long since I’d had my fibromyalgia tender points tested, I didn’t clue in to what he was doing till too late. I steeled myself for the next point presses. He tested my other elbow, then two chest points, got the same response every time, stopped as he was only confirming what had been tested a bazillion times, and stated bluntly that though I had claimed to his Fellow* I didn’t have much pain, I had exquisite pain.

Oh.

At that point, the ordinary appointment morphed into a wild ride. Before I knew it, he had called the researcher in charge of (or helping to run) a multi-centre Canada-US research study he’s conducting on a new formulation of a drug whose name I’d heard of but knew nothing about; determined they had just enough time to slot me in before the study closed; and sent me to her to answer questions, have blood drawn, have an ECG done, my BP taken, answer more questions, have a Philips Actiwatch Spectrum strapped to my right wrist, given phone-in diary instructions, and sent out the door to have a rather late lunch. Very late lunch. Almost like supper lunch.

I’m now someone else’s guinea pig. How unusual…and neat (says the person who designed and/or conducted her fair share of psychological and marketing studies in university and work). In the first week they’re measuring my baseline sleep and activity. Then I will receive the drug. Although I went along for the ride with hardly a murmur – mostly because of his first statement that told me this man knows his stuff and because of his logic (more in another post on that) – I did vet the drug as is my wont. Later, I also discussed it with my father. I have a healthy skepticism of medications; I know none is without risk. The question for me is: is the risk worth it? In this case, I’m trepidatious: Will it work? Worse, will it not work? Even worse, will I have to be on it for life and will my finances be able to handle it? Still, I think it’s worth the risk.

Meanwhile, I’ve also been booked for the usual night-time sleep study. Can’t wait. Ugh. Yet despite the unpleasantness of blood tests and sleep tests, for the first time in eons, I have hope that maybe, just maybe, my sleep problems will get better. And whatever happens, I am no longer alone in dealing with my insomnia.

 

——-

*When you see a specialist in a teaching hospital, you usually see the medical resident first. But with an academic physician, you may see their Fellow instead of a resident. A Fellow is someone who studies under or works with an eminent physician as part of their academic training and research studies. My father has Fellows all over the globe, he’s taught so many. And because I’ve met several of them while they were here, I’m totally comfortable with them, probably moreso than with residents.

Brain Power

New COTA Case Manager, A Total 180

Posted on

Boy, did I fall down on the job. I thought I’d written a final follow-up post on my case manager saga. I hadn’t! Oops.

In a nutshell: a total 180.

I met with my new case manager in the afternoon. He spent one and a half hours familiarizing himself with my needs, writing down a numbered list of my top ones, determining which ones to begin with – he said top three, I said top four, he agreed – and then ensuring he knew how best to communicate with me (email or phone) and I knew how to get in touch with him. He also set up our next time to meet, and he didn’t cancel it later.

He left at 4:30 pm.

By 9:30 am the next day, I had two emails in my inbox waiting for me. He’d already begun on my most urgent needs and had both answers and follow-up questions for me. Wow! For the rest of the week, he kept in constant touch. I received more emails from him in two days than I did from my previous case manager in two years. But then she didn’t email me a whole lot; she preferred to call me. Even so, he emailed me more often than she called – because he was acting on my case.

In one month, he has provided specific (not general one-size-fits-all) answers on subsidy questions, determined that CCAC is supposed to act on my behalf on one matter, filled in forms, looked up services that I’d heard about, showed he was not averse to learning, made phone calls on my behalf, filled in forms. What a relief to have someone fill in forms for me. It’s bad enough when you’re healthy and in unfamiliar territory, but when you have reading problems, never mind other cognition issues, you become confused, stuck, spinning your eyes as you try to slog your way through a multi-page bureaucratic form. Applying for financial services is easier!

He is also not averse to computers. He even has his own PDA. And apparently COTA is considering upgrading the computers they give to their case managers. Yes, COTA’s case managers have computers. I’ve even seen one of the ones they issued awhile ago. Small and slow but works. So all that grief I got from the COTA boss and the 19th century methods of my previous case manager was BS.

But they’re behind me. The burden has been lifted. I feel lighter, freer, relieved. COTA is no longer draining my energy. Instead my new case manager has infused some. That’s the difference a good computer-familiar case manager who isn’t afraid to learn can make.

Brain Health

COTA Case Manager, the Saga Continues

Posted on

Update to Case Management drama:

I met with my case manager from COTA (see previous post for the story so far). I told her to get to it; I didn’t even give her a chance for her usual draining chit-chat. I needed my energy to get through the session with her; thankfully my moral anger kicked in to lend me energy and thinking power. I first pried the phone number of the Homemaking service from her by asking her point-blank for it. Later, she justified not giving me the phone number two months ago — she didn’t think she had to give it to me because I already had it, because she thought in that vague way of hers that I had already received help earlier from them. I’m amazed my eyeballs didn’t fall onto the table. I demanded to know why I’d ask for homemaking help if I’d already received it? She repeated she thought I had it. She was thinking of the student who helped me for a few months before quitting abruptly. Not exactly a provincial Homemaking program.

Anyway, after I got the phone number, I asked her for all the information she had gathered to date. Of my list of items, she had three done — sort of. She had a phone number for one; 311 for the second; an information sheet from the City of Toronto for the third. (And, oh yeah, an application for the funding help I’d been receiving for years.) It took her since October 18 to gather that. She said she had to research them on the Internet, that she doesn’t know about these Toronto services.

Her territory is the City of Toronto. She’s been working in this job for at least two years, but she didn’t tell me precisely how many. I do not have esoteric needs.

She also doesn’t know what the Rotary Club offers, which I’ve been told by two doctors and a therapist should’ve been contacted on my behalf for at least one item on my list that she said there was no help for.

As I mentioned in my previous post, she had totally gotten some of my needs wrong. But she denied it. She insisted that she’d gotten my list all correct and hadn’t asked me to repeat any of my needs in a follow-up phone call. She insisted that she had listened (the implication being I’d misspoken — imagine, me, the “articulate one” telling her I needed something I’d been receiving for years). When I informed her of her error last week and what she should’ve been looking into, she didn’t leap to correct it because she “wasn’t at work.” Apparently knowing she was meeting me today was not enough incentive to make things right.

She constantly apologised: “I’m sorry you feel this way.” Would you feel apologised to with those words? Nope, me neither. I finally told her to quit it, that if she was truly apologetic, truly understood how much she’d screwed up, she’d say she was sorry for screwing up. I then lectured her on ehealth and computerization. I have no idea if she took in anything I said. She just sat there. She did intimate at one point she didn’t want to carry a laptop around on the TTC. Good thing all the students and biz folk I see on the subway with their laptops don’t agree with her. They’d get much less done and make errors, as well as spending twice the time on the same task, transcribing pen and paper to computer when they got home or to work. I rhymed off a list of lighter computer devices she could carry with password protection. It made me wonder if any of these people pay attention to the world-shattering Apple launches.

I called her boss. She said she’d talk to the case manager and get back to me. CCAC did not react like this when I called about a disrespectful OT; they believed me — they didn’t say they had to talk to the OT as if to imply they needed verification — and immediately looked for a replacement.

After she left, I needed  a nap. But I stopped myself because I need to sleep at night. However, the rest of my day has been disrupted because as a person with a brain injury, it’s very difficult to refocus. I went from anger to weariness to distractedness to upsetedness. That’s when I called my MPP to see if I could be un-split. Only people with brain injuries — the folks who by the very nature of their injury need things to be simple — are split between COTA and CCAC. As I understand it, no one else is. People with cancer get 100% of their help, including case management, from CCAC. I’m ready to cry over this injustice and unnecessary bureaucracy. I’m hoping by writing this, by venting, I can get back to my day.

Update 4 Jan 2012:

The case manager’s boss called after speaking with the case manager. She wanted to discuss some issues. She wanted to persuade me to continue on with my case manager and was wanting to work things out so that could happen. I cut her off. I wasn’t working with that case manager, and I didn’t want any contact by any means with her. She tried again, and I cut her off again. So then she said there were issues that had to be discussed. There is nothing more upsetting than talking to someone with a sweet, gentle voice who implacably talks to the patient as if they are a problem, and in this case, will not meet the patient’s request for a new case manager unless the patient gets abrupt and brusque and refuses to discuss working with the problem case manager.

She began with miscommunication. If I wasn’t so upset — and one thing she knows as everyone in the brain injury community knows is that people with brain injuries have labile emotions, you never know what you’re going to get — I’d have laughed. She was talking to the person labelled articulate. I am always and immediately labelled as someone who communicates well by every therapist, every rehab person, every psychologist and doctor I’ve ever seen right from 2000 on. Any miscommunication was on my case manager’s part, but by wanting to discuss this with me as an issue, she was implying that my case manager had listened well and got down all the information correctly, thus it was me who had not communicated my needs well, who was the problem. I told her I had no trouble working with anyone else and in communicating my needs to anyone else; everyone but my case manager knows what they are.

She moved on to the issue of computers that my case manager had said I talked about. Basically, if I expected their case managers to have computers or iPhones, I should consider not receiving service from them. They don’t have funding, she said. (Why would a therapist need an agency to fund their own smartphone anyway? In today’s society, every professional should have one regardless, but apparently in the eyes of OTs, not.) Yet my very bringing it up in the first place, then suggesting we discuss it outside of the case manager issue was seen as a reason for me not to receive service from COTA. She told me I have until next week to think about it, to think about whether I wanted to receive service from them or not when she would call me back — next week because the case managers weren’t in the office (not at work?) this week and she wouldn’t be able to find out who’s available to take on my case until they come into the office next week, not that she’s hopeful there would be someone available.

It seems to me that by using that nicest-possible-we’ll-talk-to-you-when-you’re-less-upset voice and suggesting I need a week to think about it, she is threatening to remove services from me if I don’t behave. It isn’t about me having a choice, for COTA is the only publicly funded entity that provides case management services to people with brain injuries, and she knows it. Imagine what effect this would have on an ill or very injured person? They would comply and drop their request. They would put up with bad health care for fear of even that being taken away. And they would not have their needs met plus have their health worsened through the stress of thoughts of abandonment as well as the stress of being forced through gentle, implacable persuasion, to work with someone who doesn’t listen and doesn’t meet their needs.

Update 11 Jan 2012:

On Monday, the COTA case manager boss called and gave me the name of my new case manager. That’s it. Short and sweet. I was so astonished. And relieved. The only strange thing was her reaction to me asking her to spell out the new case manager’s name. I have a hard time understanding names over the phone, and so I’ve gotten into the habit of asking people to spell them out. I usually get an uh, well, never-had-to-spell-out-a-simple J-A-N-E before kind of response. But they do spell it out. She wouldn’t. She spelled out the case manager’s last name but neither spelled out the first name nor repeated it. You’d think someone working in the area of brain injury would be familiar with auditory processing or hearing problems and would not only ensure a clear phone line, but also enunciate names clearly and repeat them slowly. Sheesh.

The new case manager called me today to make an appointment to see me and right off the bat spoke slowly (not loudly, which is what people usually do when asked to speak slowly, much to my ear’s distress) and enunciated every word. It was a bit irritating, but then I told myself I had no — zero, zip, nada — problems understanding every word, including the name. He repeated his name at the end of our conversation without being asked to. How unusual after my recent experience. Hopefully, auspicious.