If you’ve suffered a concussion, it’s a brain injury. Nothing will make sense and you’ll be constantly searching for answers. I’ll list a few links here and you can read them whenever you have time and energy.
- A guide for patients. Symptoms, what to expect so you don’t feel like you’re crazy. Best to have this printed for you. Coloured paper like yellow is easier on the eyes than white.
- A guide for caregivers. We’re tired, frustrated and cranky. We may take your head off. Nothing personal.
- SCAT or this ABI_sruvey are tools that can help a patient and doctor figure out if the symptoms are worse or getting better. Do them weekly or write in a journal.
- By not doing anything one week, feeling great, does not mean you should expect the same next week or that the scores should go down drastically. It is all very subjective. You can’t keep it all straight in your concussed head.
- The most understated term is Neurofatigue. I couldn’t understand why my body felt like a lump of lead. I felt lazy. I wish someone had told me to prepare for years where you’re body is hit with the flu. You’ll never understand it until you’ve experienced it.
- If I knew how important it was to Google for “OT planning and pacing” would change my life I would have recovered sooner. The CogSmart program through the Ottawa ABI program showed me the Parkwood point system used for monitoring and planning based on energy. It really helped me to accept I couldn’t do everything I use to in one day. I gradually returned to my regularly scheduled program. What happens is, when you’re feeling good, it makes you feel you can do more and over do it. You hit a wall and it sets you back by a day or two to recover. You feel frustrated like you’re starting from square one. It helps to be able to recognize what activity was added to cause that change.
- In ABI, I was told to monitor my heart rate. I had improved a lot during vestibular rehab exercises and the virtual reality simulator but was still experiencing dizziness. I use to be an avid runner and had a Garmin Forerunner. So I was quite surprised to see my heart rate while sitting at my desk for a few hours was 87bpm. It use to be 54 bpm because I was quite active before the accident. My elevated heart rate was an indication that my nervous system was overwhelmed by light/sound, stimulus in general. The dizziness was increased anxiety.
- This MTBI workbook was also an eye opener about the physiology of the brain, how it works and has some quizzes to give another measure of what some deficits might be.
- A friend of mine is a Health and Safety officer and went to a seminar about concussions and sent me the attached Resources she received. The more she learned, the more she thought about me and could cross reference it all and it made more sense to her.
- Reading other people’s blogs like Shireen’s helps to feel less isolated.
- Add your name to the waitlist for Love Your Brain Ottawa. It’s a FREE 6 week yoga program for brain injury survivors AND their caregivers.
- LYB was started by Kevin Pearce and his supporting family. He was an Olympic hopeful and the subject of the documentary “The Crash Reel”.
- Of course you’re supposed to be letting your brain heal and you can’t see straight to read long enough. To relieve boredom I activated the text to speech function on my Kindle. Then I realized I could cheat on my computer and phone:
Professionals you should seek depending on your symptoms:
- Get your family doctor to refer you to the Ottawa Hospital ABI program. It’s a long wait list of 1-2 years.
- A chiropractor that specializes in Cranial Adjustments can help reduce the pressure and headaches.
- For on going light sensitivity finding a place that specializes in neuropyschometry like Opticalm to diagnose what parts of the light spectrum you’re sensitive to would be a good place to start .
- I had been using Gunnar Glasses with a yellow tint for years which helped reduce eye strain and headaches because I work a lot with computers. I moved to a brighter, open concept building and they didn’t help anymore. Walking into the sun wearing yellow glasses seemed to make it more intense.
- Instead of paying Opticalm $250 for the dark purple lenses they tested me for I opted to buy 50% and 80% tints through Zenni Optical and rolled the dice for $40. The 80% tint looked like the exact match Opticalm had prescribed me. I ended up buying a pair of sunglasses as well (you can see pics on FB). They really helped me cope with my new office space.
- I think you should look into finding a PT who specializes in vestibular rehab if your having trouble balancing, focusing.
- I saw Dr. Lawrence on the news. I booked him for the $475 assessment. It’s above the $70/session Sunlife Insurance expects for a chiropractor, so you only get $56 back. It’s been a few years for me and I needed a qualitative measure of nystagmus I knew was present, but other PTs couldn’t trigger or see these 20ms movements. Broadview is the only place I know in Ottawa who has the Neuro-Kineticshardware/software.
- I did vision treatment with Amped. They are using Neurotracker software. Tracking 3D tennis balls was nauseating for me so I wouldn’t recommend it for anyone right away. They also specialize in vestibular rehabilitation. My insurance covers more PT than Chiro so they are a better financial option for me.
- I met quite a few people who have custom ear plugs. I always carried little 3M ear plugs in my purse and wore them for concerts. They’re supposed to reduce noise by 23-27dB. I went to Davidsons. They offered a custom pair of musician ear plugs with 15dB filters for $200. For an extra $60 I got 25dB filters as well. Maybe one day I’ll be able to go do to the 9dB filters and eventually none at all.
Word of advice: Don’t see more than one professional and undergo multiple treatments at once. You will be overwhelmed with all the appointments you’re constantly running to. You can see a PT twice a week. You’ll be so neurofatigued, you won’t be able to figure out what’s working and what’s not. Plan and pace.
Other things I’ve spent money on to reduce symptoms are:
- Icer’s because I loathe freezing rain for fear of a secondary concussion.
- MIPS bike and ski helmets, more for reducing anxiety about falling.
- An IKEA Leaf from the Children’s section for my desk at work to reduce light.
- Bose QC15 headphones, while playing classical piano music to help concentrate at work. They fit comfortably over my ears while I wear the musician ear plugs which is great!
- I wear Bluetooth, radio hearing protectors when I use power tools or do things outside and other people are running lawn mowers. I can say I’m listening to the radio.
- Cyclo Central Vac through the Vacuum Store. It has a muffler on the exhaust, plus I had them run the dust exhaust outside to minimize noise. I would have to wear hearing protectors to run my vacuum. Even the Roomba was too loud for me.
- I cut out using a lot of chemical cleaners, dryer sheets, harsh detergents etc. Reduce eating processed and packaged foods. You’ll feel the brain fog lift.
- Taking fish oil, magnesium and multivitamin supplements.
- I moved from a 3 story townhouse to a 1.5 story home to reduce the number of stairs I had to climb. This was a personal choice.
Professionals recommended by other people, but I have no personal experience with:
- If the tinted glasses and vision PT didn’t work I would have gone to see Dr. Jeffries about the shift Dr. Lawrence pointed out in my left eye. She is the preferred specialist for “prisms”. She has a long waitlist.
- Dr. Wareham is another doctor who specializes in vision treatment.
- Dr. Guillemette, who works with Dr. Lawrence, but also has his own practice.
- Neurokinetic Therapy
- Dr. Friesen-Kobayashi
- Disability Claims Advocacy Clinic to help you apply for CPP Disability.
Books Recommended by other people, but I have no personal experience with: