Treatments we’ve tried

A few weeks ago we spent some time outlining the traditional treatment options (OT, SLP, etc) that we pursued in Jason’s recovery.

Over the next few weeks we’re going to discuss some of the other treatments we’ve sought out such as osteopathy, Matrix repatterning and Naturopathic medicine. Of course we’ve already shared our story about how behavioural optometry has helped Jason and will continue to update how we see changes from that intervention.

It’s important to us to outline that not every treatment is right for every person and none of our stories should be taken as prescriptions or orders to seek out a new treatment. We’re lucky that I work in the health field and have called in favour after favour to get Jason seen by people I trust and refer to often. Within my practice I treat many individuals with traumatic brain injuries and we share stories and names of practitioners on a regular basis but that is no guarantee that results will be consistent. Every brain injury is different, every individual is coming into treatments at different levels of functioning and health and results will always vary. If a certain treatment story resonates with you I encourage you to read the links I include in every post and find a good fit for you. Geography and financial limitations will also come into play during your journey with TBI and you always need to make your own decisions that suit your lifestyle.

On the note of financials, there are a lot of studies that show that those with TBI often have to file for bankruptcy or are faced with financial troubles. In just over a year we’ve thrown about $40 000.00 at brain injury treatments (including lost income because that is part of recovery in my mind). No one, including us, can tell you what your financial investment should be in your brain or how you decide that. We’re gut reaction people, if research resonates with our story and the practitioner seems like a good fit that listens to both of us, we tend to try our hardest to afford the treatment. If a treatment doesn’t seem to change Jason’s quality of life within the first few sessions we will always discuss with the practitioner but then decide for ourselves when to stop treatments. We try our best to not regret our decisions but there’s never any clear answers.

I am sure you are doing your best with recovery and we only want to share our experiences to offer options. This remains a very individual journey so please make your own decisions with care and be gentle to yourself.

Book Reviews: Norman Doidge

Norman Doidge is a Canadian Psychiatrist and the author of The Brain That Changes Itself and The Brain’s Way of Healing. His non fiction books introduced the concept of neuroplasticity to the general public and changed the way many thought of brain injuries and neurological problems.

If you ask health care professionals most either loved these books and were reinvigorated by the treatment options for those they had lost hope for, or they scoffed at these ideas of new science. I think it’s safe to say you want to be treated by the group that has hope for you and a new dedication to reading literature and research. That’s not to say each treatment Doidge discusses will work for everyone but certainly there are options available now that we didn’t know about 10 years ago. It’s exciting to have hope and to feel acknowledged by the health care community and that is what I’ve heard most often from readers of these books -they are delighted to have options. The idea that they will never improve has vanished and they are left feeling excited about recovery again.

We had the opportunity to hear Doidge speak about his second book, The Brain’s Way of Healing, and he is a very compelling speaker. I encourage everyone to google him and check out some of his interviews. In this second book he mentions two treatments specifically that relate to traumatic brain injuries – Matrix Repatterning and Dr. Kahn’s Bioflex lasers. We’re in a pretty luck position as to live 30 minutes from the founder of Matrix Repatterning and about an hour from Dr. Kahn. At this point we have pursued Matrix Repatterning and will discuss Jason’s results in the near future.

These books may not provide the same insight into symptoms or lifestyle that others I’ve reviewed do but they provide a very progressive view of the brain that I think is essential to recovery. The broad strokes are that the brain can rewire and fix itself if you provide it with the opportunity too, so your journey with TBI is never finished unless you decide it is. In each book certain treatments may seem applicable to you, others won’t but the science behind it all is compelling and deserves to be understood.

A break for the Emmy’s

This post is coming a bit late to the game but a few months ago I wrote a post mentioning Tracy Morgan’s traumatic brain injury and I can’t help but follow up now.

Last week Tracy returned to the stage as a presenter at the Emmy’s and was received with a standing ovation by all. It was beautiful and his speech seemed honest and thoughtful and sprinkled with just enough jokes to keep me from getting weepy. If you haven’t seen it yet, please check it out.

It’s so exciting to see survivors returning to their life, or stealing a few minutes with friends to remember the good things they have to live for. But even more exciting to me was to see all those colleagues excited for Tracy and honouring his journey over the last 15 months. Imagine how much good we could do for TBI survivors if we started greeting them with cheers and friendship instead of frustration that they aren’t further in their recovery faster? Imagine how we could affect our loved ones if we honoured each step they take as a triumph? It was a beautiful moment for me and a good reminder to be supportive of my husband and friends as they navigate their new normals.

I need you

One of the hardest realities of life post TBI is the loneliness of it all. We miss out on big dinners and parties because it’s just too much stimulus. We had about 11 months of hermitting, just trying to get through life and when we were ready to venture out again, for the most part, people had already moved on in their life.

And so as adults, with some very real limitations on our ability to make commitments we are out there trying to make friends again. The joy of making new friendships is that they will learn to love us as we are now, with a 9 p.m. bedtime and a lack of nouns on bad days. They’ve probably seen one or both of cry as we talk about that first year of marriage. They learn our dog’s name in the same dinner date that they learn about Jason’s time at Toronto Rehab and so all these bits of our life are just us, and not a comparison to who we were before. It’s lovely and it’s weird and I have trouble putting it into words.

Then this blog called Amidst the Chaos came across my news feed and the first blog I read was I Need You More Than You Need Me. Our circumstances are completely different, where this author has moved and lives far away from friends and family we still live in our hometown with only a 7 minute commute to either set of parents. But the heart of her blog touched me, and I think it’s exactly how we feel. We need our new friends in a way they don’t need us. It feels so lovely to be welcomed into friend life again, I wish I could explain to them how very grateful I am for them to meet us where we’re at and support us along the way,

P.S. if you love how Christine writes on Amidst the Chaos read her posts on Lessons from the NICU.  We’ve lived through completely different medical issues but she sums up everything I’ve wanted to tell anyone that asks about those first few weeks of hell during Jason’s recovery.

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.

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.

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.

The three batteries of fatigue

Here’s the second analogy we learned, this one focusing on fatigue and recovery. It was a concept we first learned about this week while reading The Ghost in My Brain by Clark Elliott  which I will review in a separate post (but my pre-review thoughts are stop right now and go buy it because it is AMAZING).

Every person with a traumatic brain injury has 3 sets of batteries.

Set A – the first to be used and recharges fairly quickly, sometimes needing only a few hours to recover BUT can only recharge as long as Set B and Set C are fully charged.

Set B – the second batteries to be used, when Set A is depleted. This set takes longer to recover, sometimes up to a few days and only if Set C is fully charged.

Set C – the last reserves of energy. This set is only used when Set A and B have been used and when Set C is used you had better be prepared to give in and rest. This set takes up to 2 or 3 weeks to recover so you have to hope whatever you did was worth a few weeks in bed. This set has to be recharged for the other two to recharge so not much is going to happen in your life until you get the rest needed.

For us this was a groundbreaking way of approaching fatigue. If Jason has only used Set A batteries in a day, his ten hours of sleep usually recharges him to get through another day.

If he’s pushed his limits and gone into his Set B battery reserve we need to plan a couple of slow days so he can recover and recharge A and B.

When Jason was working full time he was burning out his C batteries consistently. He’d follow it with 18-20 hours of sleep on weekends which seemed to get him through enough to keep his job but he had nothing else in his life. He never seemed like himself, now I know that’s because he never had any energy, he was always living on his last bits of energy.

This analogy has quickly made it’s way into our shorthand speak of everyday life, if Jason is on set B, let’s reschedule some things so he can stress. If Jason is on set A I can demand he makes me dinner (sort of kidding!).

Review: Nourish Your Noggin

Nourish Your Noggin: Brain-Building Foods & Easy-To-Make Recipes to Hasten Your Healing from Mild Traumatic Brain Injury by Tina Sullivan

This book written by a mother who helped her son recover from a mild traumatic brain injury is wonderfully informative and written in terms most people can understand. She has made the journey from being a scared (I imagine!) mom to an advocate for making informed food choices and it’s clear she has done a lot of research.

She starts by laying out foods to avoid and gives REASONS (it makes turning down coffee in the morning much easier when you can picture how much trouble you are saving yourself). In addition to making her statements she offers websites and references to look up information for yourself.

This book also includes how to make smarter choices, laying out benefits of organic vs. regular produce, gluten vs gluten free, free range vs conventional eggs. It’s a very interesting read that allows you to be more informed while grocery shopping and meal planning. There are also some recommendations for vitamins, and foods to add in to your diet to maximize your ability to heal.

Finally Sullivan includes almost 60 pages of recipes that suit her various recommendations – including options for breakfast, snacks, lunch, dinner and dessert. So far all the recipes we’ve tried have been a hit, she truly succeeds to make healthy foods flavourful and enjoyable to eat even if you aren’t recovering.

If you’d like to check out some samples of Sullivan’s writing she contributes to brainline here: http://www.brainline.org/content/2012/06/nourish-your-noggin-nutrition-and-your-brain.html . Nutrition can help with recovery and is definitely worth researching – Sullivan has done the work for you. I’d recommend buying the book so you can access all her recipes – it’s for sale here.

 

What to avoid consuming when you are recovering

There are a lot of sources about vitamins and foods that help keep your brain healthy but it can be a bit harder to find out which foods are bad for you. I know in our situation it took us about 6 weeks and going to an osteopathic manual practitioner that had studied post concussion syndrome to find out some of these things.

  • Alcohol – It can slow healing and exacerbate symptoms (none of us think clearer or are more effective after a few drinks!). Individuals will often find that they are more sensitive to alcohol after a brain injury so even “just one beer” can have an effect on your recovery. It’s also an easy choice to help cope with the emotional disturbances that can come after a TBI which can be dangerous because it often increases the symptoms of depression and anxiety. If seizures are a risk for you post TBI it is even more important to stay away from alcohol because there are studies that suggest that alcohol can lower your threshold for a seizure. Alcohol can not be mixed with most medications.
  • Caffeine – Caffeine and other stimulants should be avoided while you take the time to rest and recover. Beyond the sleep disturbances that can be caused by caffeine, a lot of sufferers have also found an increase in headaches and post concussion symptoms when they consume caffeine.  Further on in recovery (after the first few weeks) some doctors indicate that a cup of coffee a day is not harmful but it really comes down to your individual tolerance. Studies on rats have shown that it can slow recovery of brain injury but this is an area that is still being researched.
  • Refined sugar and artificial sweeteners – Sugar can increase inflammation which can be problematic for healing from a brain injury. Drastic changes in blood sugar levels can spark mood imbalances ( high blood sugar can lead to anxiousness, low blood sugar can lead to feelings of depression). During recovery from brain injury these emotional changes can feel traumatic and exacerbate other symptoms.

These are just some simple rules of thumb to help with your healing.