When doctors fail (part 2)

Firing a doctor

In our last post, we shared the unfortunate experiences we had with Dr. D. In January we made the decision that we could not put up with his lack of care anymore but we couldn’t fire him out of anger. While we had to fight for referrals with Dr. D, we would have no referrals without him or another doctor lined up. Here’s how we navigated the system

  • The first suggestion by the physicians college and the ministry of health is to try to talk to your doctor about the disconnect you are feeling. I fully admit after the “move to work” comment we did not do this, in my opnion we had given Dr. D 6 months to shape up. I still understand why this is the first recommendation and if you feel like you have the ability to have this conversation please do. Continuity of care if usually helpful so if you can find a way to work with your doctor you should.
  • Don’t fire your doctor until you know someone else will take you on. Going to emerge and walk in clinics is a bad use of your time, more likely to cause problems if you are sensitive to noise etc and often won’t get you the referrals you need (it depends on how the doctor feels about your symptoms, medical and prescription history etc). If you are taking any narcotics for pain it’s really hard (impossible perhaps?) to get refills without a regular doctor.
  • If you feel that your doctor has been negligent you can file a complaint with the physicians college. We weren’t sure if our situation fit into this and frankly were too exhausted to worry about it.
  • If you have a good relationship with the support staff/office manager at your doctors clinic you can try writing a letter stating that you have lost trust in your doctor and would like to work with someone else and they may move your file to someone new. This would be extremely amazing but not always possible so don’t get upset with the staff if they aren’t able to make this call.
  • In Ontario, there aren’t that many doctors that don’t have full rosters so this may mean some asking for favours and begging but please don’t end up without any care. Ask for help from friends and family (yep, this is one time you can be THAT guy!).
  • If you do end up in emerge or a walk in and you think the doctor is a good fit for your case ask for their contact information in case you have any follow ups. Not every doctor will hand this out but it’s worth asking. Don’t try to get them to take you on when they are pressed for time in either of these environments, send them a brief thank you note and ask if they would be willing to take you on after the fact.

Tomorrow I’ll share some thoughts on how to know if a doctor is going to be a good fit for you. Make sure you are also being the best patient you can be and check out my thoughts on doctors appointments.

When doctors fail

We’ve alluded a few times to our unfortunate early experiences with doctors in Jason’s case. Originally he was taken to an excellent hospital in Toronto, and within a few hours from the attack they had identified the areas of bleeding in his brain. Because the bleeding didn’t get worse and the people in emerge around us had stab wounds and gun shot wounds (not JUST a beating to the head) Jason was sent home to my care 20 hours after being attacked. I didn’t really want him in a hospital in downtown Toronto but looking back it seems absurd that he was released with just a prescription for T3s and a note telling me about red flags with brain injuries.

One week post injury I was able to get Jason in with his family doctor, colloquially known as Dr. Dumbass around town ( NOTE: if you are told people refer to your doctor with a name like that – just save yourself the trouble and switch right away). In his first appointment – without even reading Jason’s files from the hospital he shared that if Jason went off T3s that very day he should be able to drink at our wedding in two weeks (yay priorities! Also it is completely possible/likely to go through withdrawal after a week on the maximum amount of T3s you can have which makes recovery infinitely worse) and smirked when I asked about using supplements such as fish oil and curcumin to help with his recovery. He said Jason was fine to return to driving and work and only gave him a “graduated” return to work program (two weeks of half days 5 weeks after the injury and then into full time) when prodded.

Months later Jason continued to see his doctor as his energy and cognitive skills waned. Dr. D offered no referral options so I used my connections with smarter health professionals to find out where Jason needed to be referred and how to get the referral forms. I would send Jason in with the forms and then Dr. D would usually fill them out although grudgingly (he was pretty happy to charge the paperwork fee though!). The breaking point for us came when in January, 6 months post injury, Jason shared with Dr. D that he could not maintain his work schedule and that symptoms were significantly worse and Dr. D answered with “If you can’t keep up at work you should move closer to your office, it’s not your work’s fault that you have a brain injury”.

I wasn’t at this appointment. It’s a good thing because I would have been filing a complaint right away, but instead Jason shared this with me when he got home. Oh man, the angry tears flowed. Angry that a doctor could be so uninformed, angry for my husband who was disappearing every day, angry for the implication that this random act of violence was somehow our fault. Even sharing this story I want to scream.

We had a shitty experience with doctors. It forced me to research brain injuries and alternative treatments, and it forced us both to grow up and defend ourselves. It is angering but the reality is we are not alone in our experiences. With all the gains made in traumatic brain injury care there are many many doctors that are not keeping up with technology and treatments and best practices. Clark Elliott shares shockingly awful care in his story. Comments on support groups are full of people that wonder if they are going crazy because their doctors think they should be “over” their brain injury. It’s a horrible and sad trend and it’s important to recognize your doctors abilities for what they are and be prepared to move on if needed. Tomorrow I will provide some info on how to change doctors.

 

Behavioural Optometry

 

Originally, we started this blog as a way to share our experiences dealing with brain injury in Canada – the good, bad and ugly. We also wanted to share my letter to the men (still unidentified) that attacked Jason and changed our lives forever. Through this outlet, with friends and family reading and sharing our story, Jason’s cousin Geoff Heddle read our blog and contacted us to help. Geoff is a behavioural optometrist in Indiana and invited us down for an assessment. He was the one that recommended we read “The Ghost in My Brain” by Clark Elliott since that’s a similar treatment option to what Geoff deals with. Full disclosure – I’m writing about a family member and may be biased. Before now I wouldn’t have been able to pick Geoff out of a crowd and now he’s the person mostly likely to get naming rights to our first born!

Through this amazing connection we have been exposed to some additional treatment options available in the USA. Below is our detailed account of our trip to Michigan to meet with Geoff, Geoff’s mentor, Stefan Collier and Stefan’s wife, Yvonne Frei. Stefan teaches syntonic optometry courses worldwide and is highly sought after – so we are pretty much beyond lucky to have met him!

So here is a summary of our assessment:

Treatment type: Behavioural Optometry

How to find: http://www.covd.org

Price: varies

Credentials: Look for an optometrist that discusses or has taken courses in vision therapy, behavioural optometry, syntonic optometry, neuro optometric rehabilitation

What is it? From the Australian College of Behavioural Optometrists (the most concise definition I could find!) “Behavioural Optometry is a whole-body approach to vision care.  The way that you interpret what you see does not depend solely on how clear your eyesight is.”

Notes from our assessment:

To begin, Stefan started chatting with Jason, simply asking about his symptoms, how he feels and how he got the injury. Note – I travel with a 3 inch binder full of Jason’s medical records but that really was of no interest to Stefan and to be honest this made me a little nervous. We’ve run the gamut of professionals and everyone up to this point seemed more concerned with the MRI and CT scan readings than anything else where both Geoff and Stefan seemed to care much more about the symptoms that Jason was presenting, using the imaging and reports as confirmation of their suspicions, if they used them at all. Looking back, I can see how outstanding this mindset really is. If there is anything we learned from this year, it’s that not everyone with a bleed or concussion presents the same way, making the imaging data fairly useless on its’ own.

After some questioning, Jason sat in Geoff’s optometry chair to begin the eye assessment. There was lots of discussion back and forth in German and English, with my notes full of references to Frankfurter sausage and different reflexes.

About an hour into Jason’s assessment, Geoff and Stefan concluded that the problem, or at least the most prevalent issue Jason had at the time, was that his eyes and body were interpreting where he was in space differently. This caused a fight or flight reaction constantly. His body was trying to adapt to what he was “seeing” causing his gait to change and a variety of back issues to develop.  Keep in mind that the explanations by Geoff and Stefan were far more eloquent than that and it instantly made sense of all Jason’s symptoms. Listening to all of their explanations, we geared ourselves up for spending thousands on prism glasses, the solution presented in “The Ghost in My Brain”.

Luckily for us in Jason’s case the preferred treatment turned out to be binasal occlusion or in layman’s terms, some scotch tape on part of his glasses. After coming up with the correct placement for the tape, Geoff and Stefan reassessed Jason.  There was no denying it. We could see a very clear change in Jason’s gait immediately. The rest of our time with these men was spent learning homecare stretches and exercises to do until Jason could be assessed again.

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This photocopy of Jason’s glasses shows us where to put the tape if it ever falls off. As you can see it’s only covering a very small portion of the lens.

I am not going to lie, when we left the assessment and got in the car I cried. It seemed SO absurd that some scotch tape could fix what had arguably been the worst year of our lives. I just cried. Jason was sitting beside me RAVING about how much clearer the road was and how much more he could see peripherally and I cried. I mean really. Scotch tape. If you rearranged your work schedule and drove for hours, to be told Dollarama had the key to your problems all along, you might cry too (SIDENOTE: I might have been very tired and hungry when this logic made sense to me. The reality is that it takes years of courses and study to know how to assess eyes and apply behavioural optometry correctly.)

But here’s the reality. This little bitty piece of tape has changed so much for Jason. His gait is different – more even, larger and more proportioned to his size. He looks ahead when he walks instead of at his feet. Within 3 days of wearing the new glasses he was laughing at jokes on TV (despite being tired from the trip), something that has happened very rarely since his accident. He can pick numbers out of a list. He sees more clearly and finds words more easily when talking. Despite my early negativity we both believe we’ve noticed him processing more quickly and he seems more able to remember a short list of items in the grocery store, which is huge for us!

I know without a doubt this wasn’t some easy fix. Geoff and Stefan, both geniuses in their own right, spent hours with my husband to find just the right solution to help us through this stage of recovery. In these last few weeks there have been days where I felt like I know my husband again, like there may be hope for him returning to the full life he wants and we’ve dreamed of. We are so lucky to know such an intelligent man and to have him give his time to us so generously. There will be stages to Jason’s recovery. We may have to change the tape or look into proper glasses down the road but the time I’ve gotten to spend with my husband this month has been well worth the trip and any subsequent visits we may need to make. We have both been astounded by the gains he has made in 3 weeks since our initial assessment and we are very much looking forward to an update with Geoff soon.

I know some of the gains we mentioned have nothing to do with what you see/your vision (like finding words in conversation) so I would recommend reading “The Ghost in My Brain” understand more fully (because I’m still working it out myself). I would also encourage you to check out the references listed on both Geoff and Stefan’s websites.

http://www.oepf.org/sites/default/files/chapter1.pdf (lots of science information, some description of visual therapy on the last page)

http://www.oepf.org/sites/default/files/Chapter%202%20Space.pdf (quite long, but full of valuable information if you want to understand behavioural optometry)

The Ghost in My Brain: How a Concussion Stole My LIfe and How the New Science of Brain Plasticity Helped Me Get it Back

This book by Clark Elliot, an artificial intelligence professor in Chicago, has made its mark as one of my favourite books of all time. I’m sure those that know me are sick of hearing me talk about it but honestly if you love someone with a brain injury you NEED to read this book.

Some highlights:

  • Notice how the title includes the word CONCUSSION? That’s because every concussion is a traumatic brain injury. This is the first book I’ve read that really acknowledges this and I hope it starts becoming common knowledge. There’s no such thing as “just a concussion” as this book illustrates.
  • Elliott has kept stunning notes about his symptoms and has been able to record his experiences with such clarity and specificity that it really helps the “normals” understand the “concussives” (his terms not mine!)
  • His understanding of artificial intelligence provides him with insight and analogies that help bridge the gap between normals and concussives. He is able to dismantle seemingly easy mental tasks into all of its parts and compare to computer tasks which makes a lot of sense. More than once (more than ten times?) Jason and I were shocked to suddenly have words to explain symptoms he has struggled with.
  • After exploring his situation and symptoms he found help! The later chapters discuss his treatments from Dr. Deborah Zelinksy, an optometrist specializing in neuro-optometric rehabilitation and Dr. Donalee Markus for cognitive exercises. His explanations of the treatments and information provided by each of these doctors is incredibly interesting and gave us hope about Jason’s treatment options.

Without a doubt this is a must read for anyone supporting someone with a brain injury. It can be a bit heavy and complex, making it not the ideal book for anyone suffering from acute symptoms to read themselves. Our next post will be about our own experience with neuro-optometric rehabilitation.

Check out this link for a radio show (approx. 53 minutes) with Clark Elliott and Dr. O’Shanick from the Centre for Neurorehab Services.

Our third

This wasn’t going to be a blog post for awhile but yesterday’s blog post about how fatigue manifests itself in Jason felt so icky to write I wanted to talk about how we deal with the TBI in our life.

Writing yesterdays post I was able to understand why so many blogs are by the TBI survivor themselves instead of the support person. It’s easy to construe my reporting of symptoms as nagging or ranting about my husband and that isn’t very nice. Jason and I decided when we started this blog to help others and in so doing we would have to be pretty transparent about things that aren’t all that comfortable to discuss. He reads each blog post before it goes up and any changes or information that he doesn’t want discussed would be taken out – that hasn’t happened yet because my husband rocks and is beyond brave.

Anyway, for the first few months I would report symptoms to Jason and in my mind it went like this:

Jason is distracted/sleeping a lot/ angry/ forgetting because of the brain injury.

In his mind I think it went like this:

Jasmine says I’m lazy/ a bad husband/ a bad person.

Obviously, that strategy really wasn’t working and was making both of us more disconnected. Then my wonderful, smart husband had a great idea and it has made a significant difference in our relationship.

We call his brain injury Timmy. It is it’s own distinct entity. So now it goes like this:

I tell Jason that Timmy is forgetting nouns today.

In my mind it went like this:

Timmy is forgetting nouns today – maybe we need to change plans so Jason can rest.

In Jason’s mind it went like this:

Timmy is forgetting nouns today – I need a break.

And then we move on together and united against Timmy and the symptoms that come with him.We’re on the same page because we’re removing the personal nature of the symptoms. Jason is still the amazing man I chose to date and get engaged to. It’s Timmy that has changed things and created problems and for us that distinction makes all the difference in the world. Continuing to make the brain injury a third person in our relationship allows us to concentrate on our love for each other and remember that this is just a circumstance we need to deal with, not a change in my husband’s character.

It sounds funny and it can take a bit to get into the routine but if you have been feeling attacked when people discuss your brain injury symptoms trying naming your injury and keeping it separate from your identity. It might work for you too!

No sleepy, no talky

I’ve posted some professional opinions on why sleep is so important post TBI and lots of ideas for how to make sleep work for you. Today I wanted to write a bit about how a lack of sleep presents itself in our life. Jason often tells people that fatigue is the first domino in his symptoms. Once fatigue starts to set in all his other symptoms tumble out, a year into this life I’m starting to be able to pick out the order of symptoms he commonly has and the warning signs to put an end to our activities.

If Jason runs himself to exhaust his A batteries in a day we can usually notice some symptoms. The first thing to go is usually his words. He’ll start interchanging words, missing words completely (in his case often nouns), or just drift off in the middle of sentences. In general he doesn’t notice these things which makes communication frustrating at times. More than once I’ve begged for nouns to be thrown into the conversation because I’m completely lost. At this stage there are also usually some concentration limitations, instead of verbal cues for things that need to be done we absolutely need to write down Jason’s list.

When Jason gets to his B batteries and uses them up concentration goes out the window. Jason might start out trying to get a glass of milk and end up cutting the lawn. Based on Clark Elliott’s book we make the comparison that Jason’s brain is like a computer and when he gets to this stage of fatigue it’s like new computer programs are opening up and he can’t close the window/program until he’s completed the task. So while he may want a glass of milk, if he looks out the window and sees the lawn needs to be cut that thought may take over and between fatigue and the learned fear of forgetting to do something he wants, cutting the lawn becomes priority #1. Weirdly, around the transition from B to C batteries Jason loses some ability to initiate tasks. It’s a thin line between being so tired that he switches tasks too easily and so tired that he can’t switch to a new task. This often happened at the end of the work day, knowing that he had to get to his car, drive home and be awake until dinner, he would often become stuck at his desk. I can not explain how these two things can both be signs of fatigue but they are and it seems like when Jason speaks to others with concussions or traumatic brain injuries they know EXACTLY what he means.

Once C batteries are being used and depleted it’s a bad situation. In another weird dichotomy Jason usually flips from anger (which was never an issue in his life pre TBI) to anxiety pretty quickly. The anger was really prevalent during the first 5 months when we weren’t receiving any care and he was working 50-60 hours a week in a management position. I’m sure there were a lot of other factors contributing to the anger such as denial of symptoms and confusion due to the lack of information we had. The anger now usually comes out at our cupboard that has cookie trays (does anyone know how to store those without them falling out if you need one?). Anxiety is more common at this point in our life and we do everything we can to help Jason find a way to rest before a panic attack becomes inevitable.

While these are purely our experiences we’ve heard from many others with traumatic brain injuries that can track their progression of symptoms and fatigue in a similar fashion. Almost 100% of the time everyone agrees that symptoms get worse with fatigue and that tracking early symptoms and planning a rest period can prevent full break downs.

Sleep position

Recently I’ve read a few studies linking poor sleep to Alzheimer’s and dementia. We have heard many times that brain injuries increase the risk of Jason and other survivors suffering from these conditions in the future, and scientists are speculating that that is partially related to the poor sleep they often suffer from. When we sleep our body clears waste out of our bodies and our brains, and if not cleared out these solutes lead to an increased risk of neurological disease.

A more recent study just published that your sleep position can also have an effect on the efficiency of your body at clearing out these solutes. Want to see their recommended position for excellent waste reduction? Check out this link.

Sleep deficits

This infographic was gaining a lot of traction in the TBI support groups I’m a part of this week:

Sleep deficit

 

Created by Science.Mic this infographic focuses on the effects of lack of sleep on the brain. Most of the symptoms discussed are already issues for those with brain injuries – anger, lost memories, risky decisions, head in the clouds are some of the most discussed among TBI survivors. They struggle with these things on a daily basis so one could expect that they feel these symptoms all the more with a lack of sleep.

Sleep hygiene ideas

In my last post I discussed the sleep routine that works for us. Here are some ideas that work for others suffering from brain injuries:

  • avoid caffeinated drinks and treats – especially in the afternoon and evening
  • set the temperature in your room between 60-68 Fahrenheit (according to most research this is the ideal range for sleeping)
  •  ask your doctor about sleep aids (either prescription or natural remedies)
  • use a light designed to help with seasonal affective disorder for 15-30 minutes in the morning, the Litebook is often recommended by those with a TBI
  • wear glasses that limit the light your eyes take in before bed, similar to these cocoon low vision sunglasses
  • limit your bed use to sleep and sex
  • if you can’t sleep after a half hour get up and do something boring such as the dishes, do not get out your phone or try something fun. Literally try to bore yourself to sleep! Getting out of bed keeps you from associating it with stress.
  • get rid of all lights in your bedroom – some even have trouble sleeping if there is a little indicator light on. You can also try a sleep mask
  • a lot of people report improved sleep when they use ear plugs so that they can’t hear their partner or children making noise
  • some TBI survivors report improved sleep when they use a weighted blanket such as this. I’ve heard of people using blankets as heavy as 85 lbs but I think it is fairly individual what weight each person can tolerate or find enjoyable.
  • if possible open the window, most people find they sleep better with fresh air, but it must be a balance with all the other noise/light/temperature considerations
  • meditations before bed – I’ve heard Headspace is a popular app that you can use on your phone until you are able to do it on your own
  • keep a notepad beside your bed to record any pressing thoughts -that way you don’t need to focus on them as you are trying to sleep

For more advice check out the Sleep Foundation’s focus on bedrooms.

Our sleep routine

Today I’m going to write a bit about the sleep routine that works for us. It’s been guided by sleep research and our private OT and what Oldham07241587works for us. Take the bits that work for you. Tomorrow I’ll post additional sleep hygiene tips that we haven’t incorporated yet but that others have reported good results with.

The first thing to learn is that there is a lot of research proving that sticking with a sleep routine helps significantly. Going to bed and waking up at the same time everyday helps with your circadian rhythms and internal sleep clock.

8:30 p.m. Tidy the kitchen, make a magnesium drink (we use this kind) and sip it while we do a short yoga routine (6 poses suggested for balance and relaxation by Jason’s OT).

9:00 p.m. Take the dog out and put him to bed. Turn off devices and plug them in in the kitchen or tv room (not bedroom). Head to the bedroom and turn on the fan to keep the room a nice temperature and provide background noise. Put a few drops of our sleepy aromatherapy blend in the diffuser (lavender, cedarwood and orange essential oils found here) and turn it on. Set the alarm for 8:00 a.m. Free time to read real books (screen time can alter melatonin levels and mess up your sleep cycle).

10:00 p.m. Sleep time! Often we won’t even make it until 10 p.m. before we need to turn off the lights and go to sleep. I use a sleep mask to keep the room dark but still have an awful habit of needing cheesy sitcoms to fall asleep. Jason often listens to music to fall asleep and has found techno to help the most because of it’s repetitive nature. Our OT suggested that classical is too stimulating to try to sleep to.

We use one of these alarms that start brightening the room a half hour before it goes off to help with energy levels early in the day. It does seem to make a difference for Jason and he is often waking up before the alarm starts wailing.