For those who don't know, there is a clinical trial for concussion research. I have written up some information about the initial process to give you an idea of what is involved, but as with any clinical trials, most of it is subject to confidentiality. I encourage you to check it out, apply, and see if it helps you, while assisting brain injury research. How can we complain about no one understanding us, if we won't be the first in line to help where we can? With the Super Bowl on last night, this is as good of a time to post this as any. So here we go:
What is this clinical trial, you ask?
It's a study using a Portable Neuromodulation Stimulator (PoNS) device that is placed on the tongue to stimulate two connected major cranial nerves which essentially activates neurons in the brain stem and helps with memory, gait, and balance issues. The shocks it sends are non invasive and feel like champagne bubbles on your tongue while you're performing various extensive physical therapies. It has so far shown improvements in studies for MS patients, and is believed to be able to help brain injury survivors.
It's a 7 week program. The first 1.5-2 weeks are assessments to see if you qualify for the trial. Once you know if you qualify through a series of tests, blood work, physical exam, and an MRI, you begin your therapy. The first 2 weeks of therapy is full time at the selected lab (Montreal, or a variety of clinics throughout the U.S, see below). It's 6 days a week and you have 2 sessions a day (about 1.5 hours each); the last 3 weeks you continue the full time therapy, but you can do it from the comfort of your own home and only go back to the lab every Friday.
Why should I subject myself to becoming a guinea pig, you ask?
- We continuously complain that no one understands us and that the medical system can't help us. If we can provide the smallest fraction of help in understanding brain injuries and assist in figuring out if there's a "cure", why shouldn't we jump at the opportunity?
- If we're on disability, not working, can afford the time this requires, and qualify - there is legitimately no excuse not to.
- If we have the opportunity, the smallest chance, to get better AND not to have to pay the enormous fees we pay for all our other treatments, why shouldn't we give it a try? It's full time therapy and we'd be supervised every step of the way. TBIers pride themselves on "having tried every therapy known to human kind".
- There is compensation for participating at the end of the study plus all expenses are paid (travel, accommodations, food).
- You get a trip to Montreal if you're Canadian! And there are various clinics in the US, see locations below.
What should I be aware of going in, you ask?
- This isn't a guaranteed cure - it is a clinical trial. You are putting a lot of time and effort into hoping this helps, but you have to remember it's not necessarily miraculous although there have been various great results (I actually personally know people whom this have helped).
- There is a 50% chance you get a placebo. You won't know, your supervisors/facilitators, and your therapists won't know. Only someone far, far, far away will know, and you'll be nothing but a number to them so you can't even find out.
- This is extensive therapy. Although it is adapted to your capacity on a daily basis, you will most likely be exhausted and symptomatic. If you're used to doing one appointment a week and taking days to recover from it, you need to be aware this is full time. You're in the lab and on the treadmill twice a day, 6 days a week, for 5 weeks. Though there's a lot of downtime in between sessions, you may experience headaches, dizziness, and unsteadiness. But as with any therapy, you get worse before you get better, amirite?
Is it worth it? I genuinely think and hope so.
Schedule is subject to change, but this is the general idea:
Day 1, Thursday:
- A few questionnaires on anxiety and depression.
- balance test.
- some cognitive tests: mazes, identifying images, word recollection, etc. The same old things we've all done at this point to see what level our cognitive abilities are at.
- From here, you go to the treadmill and walk for 20 min at a comfortable pace, just to make sure you're not going to pass out on them, followed by an ECG:
- Here, you're hooked up to a bunch of tubes using little stickies and your heart is monitored to make sure you're not going to have a heart attack on them either. Then you're free to go!
Day 2, Friday:
- You have to fast for 8 hours for the blood work, so as long as you're not a 2am snacker, you're good to go, but make sure you drink water so you have some goods to give for a urinal sample :)
- A questionnaire with a doctor: have you ever had surgeries, blood pressure problems, diabetes, cancer, any ulcers, aneurysms, etc, the usual check list. A quick physical check up and you're good to go with a long weekend to rest up until the next session.
Day 3, Tuesday:
You go in for an MRI. In and out within half an hour. Here they take a series of images over the span of 4-5 minutes each where you lay still in a butt flapping open gown. Make sure you have no metal on you, jewelry, or implants of any sort.
Day 4, Wednesday:
A neuro assessment - if you haven't done one before, this is the test to understand what cognitive level you are at, but it is also the test that leaves you pretty symptomatic and out of it. Plan nothing for the rest of the day and rest up.
Qualifying clinic locations:
- Montreal, QC
- Surrey, BC
- Orlando, FL
- Portland, OR
- Richmond, VA
- Washington, DC
How can I apply, you ask?
If you are:
- 18-65 years old
- Have had a brain injury over a year ago
- didn't lose consciousness for more than 24 hours
- have difficulty with gait or balance (please note, if you seem fine with your prism glasses, try your balance without. If you think you're mostly fine and have a minor stumble, call in anyway! Better safe than sorry 🙃)
Contact: 1-877-844-5234 or firstname.lastname@example.org
For more information: please check out brain injuries trial