It is undeniable that PT, OT, and ST are crucial tools for rehabilitation. Patrick’s had amazing therapy and made great progress (all things considered) during his first 3 months of recovery, while living at an in-patient facility. Then, for about 9 months, he basically had no formal therapy. He still progressed, but much slower, and only because we worked so hard at it on our own. Seeing what became possible after Patrick got access to therapy in his 2nd year of recovery, made me realize how invaluable it is for restoring function to the body and mind.
That’s an interesting word by the way: “function.”
Despite its value, it is in conventional therapy’s very definition that it also creates it’s own hang-up: the goal of “functionality.” It’s a broad term that has less to do with restoring function, and more to do with becoming functionally independent. In the early stages of recovery, independence is obviously the main goal, because a survivor who is as catastrophically injured as Patrick was, is likely initially depending on others for everything. But there comes a point in time, where independence alone is not enough. Restoring function to the body and mind, as close to what it was previously, remains a high and somewhat lofty goal, which is a lifetime process left to the survivor and his/her loved ones.
These days, therapy for us has become very intermittent. In fact, Patrick and I were told yesterday, that he’s being discharged from therapy again. His therapist feels that he is “doing too well to warrant therapy” and is “fully functional.” He told us what we’ve heard many times: to go home, build confidence, make gains, and come back in a few months for a re-evaluation if we want more therapy.
We have done this now numerous times, but it’s getting to the point where we are wondering if conventional therapy even has it’s place in the chronic stage of TBI, which interestingly enough, has no place of its own in modern medicine, where survivors can pursue continued healing. Perhaps this is because of the long-held view, that at almost 3 years post, someone like Patrick is done recovering (which has been proven false)? Centers that would address a recovery plan for the chronic phase of TBI are therefore extremely needed and necessary.
Interestingly enough, when we attended Brucker Biofeedback in Miami this past winter, they had a very different viewpoint about Patrick’s recovery. They saw great work that needed to be done, but great potential for him to restore function to his body. Yes, his walking is “functional” I.E independent, but is it normalized walking? No. He has falls. He is unsteady. He is not properly weight-shifting, and using his right side to propel him forward. He is hip-hiking and throwing his shoulder to get the leg around. His foot drops. Patrick knows all of this and it frustrates the hell out of him.
The therapists at Brucker, who practice alternative medicine, fully believed that with practice and work, Patrick could rewire his brain and walk normally. After measuring the mind/body connection to the impaired muscles, and working on them for a month, the measurable gains were undeniable. I saw his foot moving as the connection strengthened. I saw him beginning to trust his left leg in gait. I also saw how ingrained the habits of throwing his shoulder and hip-hiking were, from a time in his recovery where he had no strength in that leg. The strength is there now, but the habit has to be unlearned.
So you can imagine my frustration, when recently his physical therapist would tell us that Patrick was walking “beautifully,” only to have Patrick speak up and say “Wait… I know I did something wrong there. I was swinging my leg around.” If Patrick had enough awareness to know something was off, why wasn’t it being worked on? I’m sure his therapist would argue that it was, but it felt very much as if his condition was seen as likely permanent, and our only hopes were to work on his ability to circumvent his impairments.
So where is the disconnect between conventional and alternative medicine?
What I believe, is simply that the goals are different. A PT can look at Patrick and say he’s walking right, and our Brucker team can say he’s walking wrong, and they can both be right. Because they are approaching it from two different definitions of “functionality” and two different sets of goals. One is focusing on independence as the main goal, at the expense of normal function. The other is focusing on restoring the body to function as normally as possible, even at the expense of independence. It seems that when it comes to comparing the two, the problem is one of language, viewpoint and goals more than anything else.
Let me be clear on this: I am not in any way putting down our therapist. He does his job very well. He brings a lot to the table. I have great respect for him, and his profession. Conventional therapy as I said, has helped Patrick immensely, and i’m indebted to these people for all they’ve made possible.
However, we are no longer in the acute stage of healing. And what I’m learning is that conventional therapy doesn’t really have a place in our life anymore. We’ve just outgrown it. This is why we have been pursuing alternative forms of therapy; equestrian therapy, Brucker biofeedback, CBD oil, adaptive yoga, and NeurOptimal Brain Training. If you are in our position, you may come against some resistance from doctors or therapists telling you that the pursuit of alternatives are a “wild good chase” or that you’re “turning your loved one into a guinea pig.” But we have found it to be quite the opposite. Alternatives are every bit, if not more useful than conventional therapy, because they open up a world of possibility.
Lastly, there is a lot to be said for changing the direction of recovery from one of “therapy-based” healing, towards just living life to the fullest. Instead of giving up 3 days a week to go to structured therapy, you can take a cooking or art class, volunteer, take up a hobby, etc. There is a lot to be said for getting back to living. After all, it was through living that we grew the neural connections that made us who we are, and that were tragically severed in an instant by TBI.
What better way than to regrow them, than to get back out there and start living again?
(If what you’ve read has touched you, would you please consider supporting by subscribing for free to our blog? Thank you. All our love, Anj & Patrick)