Practical tips to help your loved ones

Guess what? June is Canada’s Brain Injury Awareness month which is what lead to this blog’s creation last year. According to Brain Injury Canada “160,000 Canadians sustain brain injuries each year”, clearly an incredible number to consider when we look at the cost to individuals and our health care. In the last week and a half, literally 10 days, I have learned of 3 friends being affected by brain injuries. They each have different stories, and different prognosis’ but at the end of the day they have all been launched into a very hard season of their lives.

Jason’s two year anniversary of his injury is fast approaching so I’ve found myself replaying so much of that summer in my head. The friends that showed up, the ones that disappeared, the loneliness that seemed so pervasive and the shocking little joys that we experienced on good days. And so, thinking of each of these people, I wanted to write out a short list of how to help after a brain injury. This is based solely on our experience and stories I’ve heard from others we’ve met in this journey.

  1. Show up, and bring food. It’s funny how ridiculous it seems to spend time cooking when you’ve been launched into a life with brain injury. There are articles to read, calls to make, and a loved one to watch over – or if you live alone and have a brain injury all your energy is going to basic survival. The really basic stuff, like breathing. Bring ingredients or even better, simple meals to be reheated. The friends that showed up with food were literally the best that week. If possible, and it seems comfortable, stay to eat with your friends. I can not over state how scary and stressful the first few days are and if I was left alone with my brain (remember, I’m the non injured one!) I would become nauseous and unable to eat. I needed to have people around me to keep me from fixating on how scared I was.
  2. Show up, and stay. As the support person caring for Jason I had prescriptions to fill, calls to make, and a heck of a lot of wedding errands to sort out. Jason was still at risk of having seizures or deteriorating and so I had to ask friends and family to come and babysit. It was awkward, and I felt the need to entertain or put out a spread (to be fair, the spread was more of a “here’s all the types of tea, have fun” kind of thing). If you can offer to come over and sit that would make things so much easier. Also, if you choose to sit, listen to the recommendations from the doctor and support people. Don’t force your patient to get up and get moving, or carry out a conversation.
  3. Show up, and help. Cut the grass, drive the patient to doctors appointments, walk the dog, take the kids to the park. Similar to suggestion #1, the daily activities seem unimportant compared to learning about Traumatic Brain Injury and self care so these are great ways to help.
  4. Show up, and watch your words. This is a funny one. While desperate for friendship and kindness throughout this journey, some times we have ended up more hurt than anything when trying for connection. Don’t tell your friend you are glad it’s them and not you, if they were in a car accident avoid saying they look like they were “hit by a truck” (or even worse – that you feel like you’ve been hit by a truck!). The sentence that always upset me was “roll with the punches”. It just always seemed so insensitive. This is a also a great time to learn about the ring theory for grief – explained best in this article from the L.A. Times. Do not complain about how hard this is on YOU to the person with the brain injury.  And if you are reading this and you have a brain injury – I think it is completely acceptable to print this off, label the circles and post it on your door. God knows I nearly did!
  5. Show up, and hold space. This one veers slightly off practical and into the emotional, it’s going to require you to act like an adult even if it’s super uncomfortable. According to Heather Plett holding space is: “It means that we are willing to walk alongside another person in whatever journey they’re on without judging them, making them feel inadequate, trying to fix them, or trying to impact the outcome. When we hold space for other people, we open our hearts, offer unconditional support, and let go of judgement and control.” Not easy, very helpful. And this one is possible even if you are across the country. Reach out, call, send a message and just be okay with the response. I encourage you to read the whole article on holding space here.

I hope these ideas help you reach out to those around you with traumatic brain injuries. I have linked to other articles in these posts if none of my recommendations resonate for you.

10 Ways YOU Can Help!

10 Things People with a Brain Injury would like to hear

9 Things NOT to Say to Someone with a TBI

 

A new version of alone

I thought I wrote a review of Rosemary Rawlins’ book Learning By Accident but apparently that was all in my head. I’ll have a blog post coming soon about it – but for now, the short background to today’s link and blog post. Rosemary wrote her book after supporting her husband through his brain injury. It’s a touching story and really captures the overwhelming nature of trying to be a caregiver and maintain “real life”. Now she writes blog posts for brainline.org and I was always find them full of truth. Honestly when I read her posts I feel like I’m sitting with a best friend having a cup of tea.

The post I stumbled across today was titled What TBI Teaches Us About Endings and was Rosemary’s typical beautiful writing. Seriously, click the link and go absorb this woman’s wisdom. She and her husband were married for over two decades before he was hurt and I can only imagine how much there was to mourn when memories disappeared.

One of the hardest aspects of TBI to explain to others was how much I miss pre TBI Jason. Outsiders see how lucky I should feel to have Jason at all, or how similar he seems  when you meet him for a minute or two. More than once I’ve been told to look on the bright side or roll with the punches (which always seems particularly cruel considering we’re here due to an assault). And it’s a funny dynamic because I am SO happy to have Jason alive and I was SO sad that he was not the man I fell in love with. Memories have disappeared, inside jokes are dead. For a long time activities we loved to do (rock climbing,travelling) were limited due to the possible risk to his health. And it’s a strange kind of aloneness when you are having dinner across from a man that looks like the man you love but you don’t know how to make him laugh or carry a conversation anymore.

When I read Rosemary’s blog I’m glad we dealt with TBI so early in our relationship so that there was less to mourn and no children that had to learn to love their new dad. But there’s still a part of me that feels like it was a tragic start to our marriage, grieving pre TBI Jason, my best friend. I have no words to explain how lonely it felt going through two of our biggest days (his injury, our wedding) without him to talk to. Any attempt I’ve made (trust me, I’ve written and deleted about 15 versions while trying to write this post) cheapens our wedding and our marriage. Everyone has dealt with that grief of losing someone at some point in their lives, I just wasn’t aware that’s what I was dealing with. I felt selfish and bratty being sad when he was alive beside me.  I missed him so much it hurt and yet I was really frustrated by him being at home.  I loved him and was committed to our marriage but I didn’t really like him some days.

It’s  hard piece of TBI life for the survivor or caregiver and it took me months to find help, which for me was simply a matter of labeling the feelings. Once I knew a) what was going on and b) that it was okay, I started liking Jason a lot more. The two terms I found for these feelings were ambiguous loss and disenfranchised grief. Up until the point where I discovered those terms I had spent hours researching TBI, symptoms, solutions etc, completely focused on Jason’s piece in the puzzle. Likewise, emotionally, I only saw how he  had changed. One day, a friend brought up these concepts of loss and grief and suddenly I felt lighter. I had a piece in this puzzle too, people (maybe not my people, but PEOPLE!) had looked into how caregivers felt and thought and functioned. Our life didn’t have to be all about two alone people in a house anymore.  And also, because I knew feelings didn’t last forever, I was blessed to feel optimistic about our relationship again. Eventually I wouldn’t be so annoyed or alone. I was right too, at some point we liked each other again, and then somehow fun started coming back into our life. There was no date specifically to recall, it just developed as the grief and loss edged away. They still take over my heart some days but it’s rare now.

So for the caregiver’s be gentle with yourselves. It’s not an easy life you’ve been given and it’s okay to have unhappy days. To the friends of caregivers, I know these unhappy days and the sentiments of grief and loss are hard and awkward. Try to let it be okay for your friend. Look into ambiguous loss and disenfranchised grief and if you think they are effecting you please talk to someone. Try to remember the airplane oxygen theory – you need to care for yourself before you can care for anyone else and if you are beating yourself up over your feelings every day you are going to feel run down quickly.

Matrix Repatterning for brain injuries

Treatment type: Matrix Repatterning

How to find: http://matrixrepatterning.com/Pa_practitioners

Price: Often $100-250.00 an hour

Credentials: Look for someone listed on the Matrix Repatterning website, they will include the designation CMRP after their name and other designations

What is it? From Matrix Repatterning

“a form of manual (hands-on) therapy, which is applied to the deeper, denser parts of the body, such as the skeletal framework (bone) and the dense fibrous tissues (fascia) associated with the internal core structures.  Areas of injury and strain may be precisely located based on an alteration in the mechanical and electrical properties within these tissues.  Treatment involves the application of gentle pressure in order to release tissue tension, which can facilitate the restoration of muscle tone, flexibility, joint mobility and optimal biomechanical function.”

Notes from our treatment:

Matrix Repatterning is another hands on modality we sought out during Jason’s recovery. It was mentioned in Norman Doidge‘s book The Brain’s Way of Healing and we are lucky enough to live 25 minutes away from the founder of the technique. Parts of the treatment reminded us of osteopathy in it’s holistic view of Jason’s body and injuries and the gentle manipulation used to treat injuries. The most stunning part of the appointment for us was that Dr. George Roth (the founder) spent almost an hour assessing Jason’s gait, balance, reflexes and range of motion. 7 months into Jason’s recovery this was the first objective assessment that had been done and the first time his tracking issues were brought to our attention (which we would later understand with behavioural optometry).

Treatments were weekly and again Jason was often able to fall asleep on the table. As with osteopathy he usually enjoyed a deep, long sleep post treatment. Based on Jason’s assessments the goal of Matrix Repatterning for him was to help with healing in the brain which should in turn minimize the differences in his reflexes and tracking issues. Unfortunately with goals as broad as that and a limited budget for care we were unable to continue treatments long enough to be sure if they were making a difference. We’ve talked to others, and certainly read stories, of people that experience tremendous results and swear by Matrix Repatterning so again I encourage you to do your own research.

Massage therapy post TBI

As a massage therapist, I’m fairly biased on this subject. I believe my colleagues and I can do a lot of work to contribute to pain reduction and calming down the nervous system. I’ve seen a lot of great benefits from registered massage therapy in the post concussion/ post TBI group but of course this remains an individual journey.

Treatment type: Registered Massage Therapy

How to find: http://www.cmto.com/

Price: In Ontario often $85.00-100.00 an hour

Credentials: Look for someone registered with the massage therapy college in your province, I’ve linked to Ontario’s college above

What is it? From the CMTO

“Massage therapy consists primarily of hands-on manipulation of the soft tissues of the body, specifically, the muscles, connective tissue, tendons, ligaments and joints for the purpose of optimizing health.”

Notes from our treatment:

Due to the visual issues Jason experienced (non diagnosed until 1 year into recovery) his gait changed drastically, from a strong confident man to a gait similar to that of a stroke survivor. One side shuffled more than walked and he had acute low back pain repeatedly in that first year.

Massage therapy with some of my colleagues in our hometown alleviated a lot of to his pain and helped even out tone between the two sides. Registered massage therapists are educated in anatomy and physiology and were able to assess his range of motion and tone throughout his upper body. While some areas were uncomfortable to be worked Jason always felt relief post treatment. Often the chance to lie down mid day and have a massage also lead to a deeper sleep in the evening.

As a massage therapist I find with most of the clients I work on slow, gentle manipulation goes much further than the adage “no pain, no gain”. It’s not necessary to be in pain throughout your whole treatment or feel like you’ve been hit by a truck post treatment. Registered Massage Therapists in Ontario are educated use range of motion exercises and stretching as part of their treatments which can help significantly if you are experiencing any symptoms of decreased mobility or coordination on one side. All treatments should be explained to you before you get on the table and your massage therapist should be checking in with you about pressure and if you understand and want the treatments they are proposing.

Finally, I’d like to remind everyone reading that in most treatment facilities some of the environment can be altered – I often turn off lights or music to help those with sensory issues post TBI. Your therapist may not know to suggest these accommodations so please ask for anything you need to maximize your benefits from the massage. Also don’t assume because you have a head injury your treatment must be localized to head and neck, as in Jason’s case often symptoms show up throughout the body and a global approach to treatment can be beneficial. Communication with your massage therapist is key and will help you decide if this is an intervention to include in your rehab program.

Online support groups post traumatic brain injury

We’re lucky we’re living this life in the age of the internet. Most of our helpful resources and advice have come from articles and information that we’ve found online, that I doubt I would have discovered without internet. Support groups for traumatic brain injuries and post concussion syndrome are flourishing on Facebook.

These groups can be very useful but come with a unique set of challenges. Here are some things to keep in mind while searching for advice online:

  • As we all know some TBI survivors have issues with memory, self regulation, or depression (among other things). This means some posts will be made again and again, some may be sad, some may be inappropriate. Have patience with those sharing their thoughts and feelings and try to remember where they are coming from. This is even more important if you are a caregiver speaking to those with TBI, we will NEVER really understand how they feel or the struggles they face and it is essential we do not come across as preachy or instructive. Be grateful for the stories they share with you and try to learn from everyone.
  • This is still the internet. Do not accept diagnosis’ from anyone, nor change medications or treatment plans without speaking to your team of medical professionals. Use the information shared in these groups to come up with questions for your doctor, or lead you to research new treatments or literature.
  • There are people that join these groups to try to take advantage of those with disabilities. Please do not ever give you personal or financial information out to anyone from these groups and don’t arrange to meet anyone in private.
  • Monitor your own posts. If you’ve had good success with a treatment or vitamin, feel free to share but do not offer false promises or prescriptions. For example you can say “Taking X supplement has reduced my headaches from a 9/10 pain, to 2/10. Here is a link to look into it”. Please don’t say “Taking X supplement has fixed my brain injury. It’s the only thing you need, start taking it now” .

With these ideas in mind Facebook, and other blogs and social media can offer support during this hard journey. Some great groups I’ve learned from on Facebook include TBI Tribe, Spouse of TBI Support,  and Closed Head Injury Support Group.

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.

10 Ways YOU Can Help!

Uncomfortable with “feelings” talk? We’ve all been there. It doesn’t mean you need to feel (or act) like a jerk. Here’s 10 practical ways you can help a friend or family member with TBI. Seriously, anyone that did any of these in our first year was considered a super hero in my mind. Amy Zellmer has done a great job of explaining why these actions would be appreciated and when they are helpful to implement so read mindfully and then enjoy being someone’s superhero!

9 Things NOT to Say to Someone with a TBI

This is not my list but actually an article that started on brainline.org and has been shared with me by tons of friends and family wondering how accurate it is.

Have a peek at the 9 Things NOT to Say to Someone with a TBI.

The author of this article has done an exceptional job at outlining the worst statements we heard in Jason’s first year of life with a TBI. I highly encourage everyone to read this article and file it away in your brain for use around your loved ones.

 

How much can you trust health care?

This is a personal post for me. As a registered massage therapist in Ontario I count myself among regulated health professionals and I like to think we are an ethical and intelligent group.

As a wife navigating traumatic brain injury recovery I have been frustrated and disappointed by health care professionals again and again.

So here’s my thoughts – there are a lot of great health care professionals out there. There is a lot of new research and understanding about traumatic brain injuries and post concussion syndrome out there. Not every health care professional has an understanding of traumatic brain injuries and even those that claim to understand it may be working with outdated data (for example the old concept of “the brain only recovers for 1 year post injury” vs. the emerging data about neuroplasticity).

When you work with someone you need to trust them. Be honest about symptoms, be honest about what is within your ability to do and afford for treatments. And then you need to trust yourself to make the decision to switch treatments if something isn’t sitting right.

When a doctor called Jason a wimp for having symptoms 7 months post treatment? We left. When a naturopathic doctor suggested I should just look on the bright side and stop worrying about the severity of his symptoms? Fired. A personal trainer that wasn’t concerned her workouts were sending Jason back to bed for 2-3 hours? Gone.

But we found replacements for each of those important parts of Jason’s recovery that are more well versed in TBI. It might be more expensive paying first appointment fees again and again, but the financial cost is nothing compared to the successes he’s had with his new team and their ability to assess changes in his symptoms well. I encourage you to do the legwork to find a team that is great as often as possible and don’t let words from uninformed practitioners, even when they have all the credentials in the world, discourage you during your recovery.