We lived for 8.5 months with very little medical help. We were confused, depressed, frustrated, angry. I’d done research online and continued to be upset by our doctor choosing to make up his own timelines for my husband’s recovery and to ignore every bit of research that had been done in the last 15 years.
If you’re struggling with getting people to take your injury seriously – we get it. And sadly we aren’t the only ones! This is just one article trying to help brain injury survivors convince their peers about their injury http://synapse.org.au/get-the-facts/when-they-dont-believe-you-have-a-brain-injury-fact-sheet.aspx
Amazingly we fired our family doctor, found a new wonderful doctor and within weeks had our first meeting at Toronto Rehab.
It was without a doubt the best thing that happened to us in our year.
It started with the phone call advising Jason of his appointment, not only did the person on the phone double check that Jason understood everything that was said, but she also EMAILED to confirm the details and left a message on my phone so that I knew to check for the information.
When we got into the center the receptionist sat with Jason to make sure he understood the paperwork and let me know what was being filled out.
Our first meeting with an occupational therapist and a speech language pathologist was an hour long asking each of us about symptoms and advising us that WE WERE NORMAL!
Then we met with a physiologist who spent time showing us on a model brain where the bleeds were and what symptoms were common with those injuries. He talked us through their program and made sure we were ready to dedicate time to Jason’s recovery. He spent time with us.
The neurorehab program included 2 weeks of assessments and then almost 8 weeks of sessions (2 days a week) with an occupational therapist, a speech language pathologist and a social worker. Jason was also assessed by a physiotherapist but he had no need to have sessions with her. During our time at the program Jason was treated kindly by each person he met and no one ever shied away from questions about his expected outcomes, why some symptoms were occurring or emotional conversations about life at home. I was often included in the social working sessions and his other team members always made a point of letting me know if there were any changes to his schedule.
At one point Jason was examined by a neuropsychometrist to assess his abilities for return to work. Although the assessments were extremely taxing (honestly I think the testing is hard without a brain injury) Jason was really excited to have something concrete to show any changes and help plan his return to work. The neuropsychologist who reviews the assessments took almost an hour out of her day to chat with me and ask about our home life and make sure that our needs were being met.
The two and a half months we had with Toronto Rehab was hard (the commute alone was tiring -traffic is the worst) but it was a relief to show up every day and know that finally there were people on our team.
I don’t write this to flaunt our good luck at finding an awesome team, although I do think someone needs to brag about Toronto Rehab’s awesome team, but to give you hope that there are people out there that know what they are doing. There are rehab programs and teams that understand brain injury and all the ways it can influence your life. You just need to keep asking for referrals and pleading your case. I know it isn’t as easy as it sounds but it is so completely worth it. Just keep trying until you find a team you fit with.
If you are in the GTA and looking for treatment with Toronto Rehab you must have your doctor refer you to the ABI Network (http://www.abinetwork.ca/). This referral system screens candidates and matches you with the best program in the area for your symptoms and injuries.
Links to Toronto Rehab Information sessions: http://www.uhn.ca/PatientsFamilies/Health_Information/Patient_Family_Education/Documents/TRI_Class_Living_with_Stroke_and_Brain_Injury_Workshop.pdf