Finding the right fit

We’ve shared our bad experiences. We shared some tips on how to sever ties with the bad doctors. We were lucky enough to get a fantastic doctor to take Jason on. Here are some indications you have a good doctor in regards to brain injuries

  • The doctor should be patient (no pun intended) as you describe symptoms. Good doctors will recognize how hard it is for you to remember and communicate and will view those as other symptoms not just you being difficult or flighty.
  • The doctor should be aware of the best practices involved with brain injury cases – time off work, referrals in your area etc
  • The doctor should be prepared to refer you out to a neurologist, neuropsychologist and able and willing to explain the results of those appointments when you see them next
  • Ideally a good doctor will be flexible if you’d like to try private treatments or supplements but you MUST be honest with your doctor about what you are involving in your recovery
  • Empathy and good listening routinely top surveys about what Canadians most want from their doctors – and it makes complete sense. You don’t need a doctor to sit and cry with you but you do want them to understand where you are coming from and take your complaints seriously.
  • A good doctor will ask about how symptoms are affecting your activities of daily living, social life, mood etc. They want you to be a healthy well rounded individual.
  • A good doctor will recognize that you may have flawed self awareness post concussion or brain injury and will ask what others say your symptoms are. Sometimes this distinction makes all the difference in the world in how you report symptoms.

Here is a great doctor (American) speaking about patient’s rights with doctors and indications of good doctors – I encourage you to watch or read the transcript.

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.

 

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 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.

Trial and Error

Our biggest fear after Jason was discharged from rehab (we’ll detail our experiences in future posts I promise!) was: how will we walk the line between respecting his need for rest and trying to add in new responsibilities and tasks?

The three batteries of fatigue concept has helped us communicate about how Jason is feeling and how much rest he needs. That being said it has not been easy. We certainly have had days where we anticipated grocery shopping would use his A batteries only to find that the lights were flickering and the store was overrun with wild children and he zipped right through his A batteries to B and nearly exhausted them.

Talk about concerning. On those days it is SO easy to get discouraged that things aren’t getting better, that Jason can’t even grocery shop anymore, that we’ll never have our life back. Those thoughts come up pretty quickly when you need to send your husband to bed for three days. What we need to remember is that recovery isn’t easy and giving in to those thoughts is not going to make it easier.

We had some of these days while Jason was in rehab and our social worker told us to look at them as successes. We felt confident enough with his recovery to try something new AND we were now skilled enough to recognize the exhaustion before it became overwhelming AND flexible enough to change the plans for the next few days. It is kind of amazing (more amazing if you know my neurotic self) and I’m not sure our social worker knows how many hard days her words have gotten us through.

One of these situations happened after rehab and (discouraged again!) I spoke to a friend that is an occupational therapist and she assured me they like to see people that are willing to try new things. As long as we can recognize the need to change plans if it is too much it’s worth trying for the gains of new activities. So now we make some decisions to go into Jason’s B batteries. Sometimes it’s because we’re desperate for sharing laughter with friends, even if it means the next couple of days will be quiet around home. Sometimes it’s to see if Jason can handle a few hours of organization or computer work to judge his abilities to return to work. While we spent the first few months of this year terrified to let Jason get tired we now use it intermittently to help with recovery and it has been a really good decision for us, at this point in our year.

If you want to start exploring the concept of mindfully using B batteries please do so with some guidance from your doctor or health care team. Make sure you’re at the point in your recovery that it will work for you. Get ready to increase sleep and rest so that you can recover fully into A batteries. Set up back up plans for if things don’t go well (make dinner ahead, have a babysitter on call, arrange for someone to walk your dog). When you start exploring your battery limits with intention I really do think it can add life into your recovery.

Famous faces

I never know if I notice more research and stories about traumatic brain injury because we’re in that club now or if our news at large is featuring more stories about brain injury. It seems I can’t go a day without a new article or name showing up on my Facebook feed.  And while I am sorry to see anyone join these ranks I can’t help but hope with some of the famous names starting to talk about their injuries there might be further advancements made in TBI care.

Sharon Stone has been featured in many magazines lately talking about life after a brain aneurysm. While most of the articles segue easily from pesky brain injury symptoms to her wealth and movie projects I’m still hoping that her openness gets people talking. If someone with vast amounts of wealth and connections is still suffering more than a decade later why are we judging individuals that can’t return to work within a year?

Tracy Morgan‘s brain injury from a car crash in June 2014 has brought to light the struggles doctor’s have with suggesting time limits on recovery and how much WORK survivors need to do to get their life back . As a well loved comedian with mass appeal I think there are a lot of people watching to see how he recovers and hopefully this will start conversations about brain injuries.

These two cases are in addition to all the NFL and NHL players that have been open about their issues with concussions, post concussion syndrome and traumatic brain injury.

Some thoughts on helmet ad campaigns

I’ve seen two different ad campaigns to raise awareness for TBI lately and I wanted to write a bit about them on our blog. Both of these campaigns are focusing on the traumatic brain injuries caused by not wearing  helmets. Often over the last few months my friends with experience with TBI and I have talked about how we cringe inwardly when we see kids riding their bikes without helmets. Studies show that helmets reduce between 69-85% of traumatic brain injuries in cyclists. While helmets don’t protect individuals from everything (just look at the NFL)  I do think this is a demographic worth targeting.

The first is a series of photos showing people after their TBI. I have yet to track down it’s origins but the powers of Pinterest and Facebook have had these in my face almost every day for the last couple of weeks.i-dont-wear-helmet hlemet

 

I find these ads absolutely heartbreaking – which is probably the point. I don’t know if they would benefit the young adult group that often suffers from TBI in Canada because that 18-40 year old crowd still thinks they won’t be the one to end up with an injury. I do think this campaign would strike a cord with family members or friends that might encourage their loved one to start using a helmet during their activities more often.

The second campaign is far more entertaining and seems to be getting a lot of support from that 18-40 year old group. The Naked Challenge features equestrian riders (and now at least one snowboarder) naked except for some strategically placed helmets and the caption “I would rather go naked than not wear a helmet”. It’s catchy and fun and the name alone attracts curious people to their page. I think it’s a great sentiment and will hopefully get people talking about the consequences of not wearing helmets. Please check them out and give their page a like!