How do you define RECOVERY?

Introduction:

I am an 18-year survivor from a severe TBI that left me in a coma for four weeks.  As I reflect on my experience with TBI and my rehab experiences, I have always tried to ‘grade’ my recovery.  When I attempt to do this, I ask the following: To whom should I use for a proper comparison?  Should I look at other survivors and compare my injury, comatose status, physical deficits, cognitive abilities, etc.?   These were a couple of questions that all brain injury survivors might ask, but I have learned that all brain injuries are different, and we are like snowflakes, but how do I define RECOVERY?  

If you asked me today how I would define recovery, I would tell you that I am still recovering.  I believe that if there are things you want to accomplish, but you cannot do those things today.  So, you are recovering or trying to figure out how to meet your goal(s).  When I was in Rehab, I remember asking my therapists if I would be able to return to do this or that again.  The answer to this was always an opened ended response that began with ‘if certain functions returned or if muscles could be re-awakened and strengthened again’.  I did not get the response that I really wanted because my doctors and therapists did not know how to answer this question.  I used to wonder why therapists could not provide me with an action plan that would provide exact steps to walking or using my left arm again.  Unfortunately, they were unable to predict when feelings, functions, or activity would come back.

Recovery is hard to define, personally… I think it all depends on the survivor and what is most important to them.  During my recovery, I was not able to return to playing basketball the way I had previously.  But I am now able to bowl and be competitive doing it, so I am satisfied.  Do I miss doing the things I used to love doing?  Heck yeah!  But I have learned that some of the activities on my ‘wish list’ require that I perform fine motor movement with both sides of my body, which I cannot do right now.  I am still trying to get better and stronger, so I am still recovering!  Should we get to a point where we give up trying to the things we want to do in life?  I don’t believe in giving up on myself, but I do know when things are out of my reach.  But it is all based on your personal desires.  While I wished I could do more than I am doing now, how much will be enough for me?  

Some days during my recovery I have asked myself the following questions:  Have I made a good effort to do everything I was supposed to do?  Could I be in a better physical standing, if I did more repetitions of a certain exercise or even stretched more?  Did someone not tell me what I felt I needed to be better off today?  Should I be satisfied?  

Here is what Flint Rehab says about making a full recovery from TBI:

The following are a few tips to help you achieve your fullest recovery possible from a TBI:

1. Activate Neuroplasticity

By far the best way to ensure a full recovery from TBI is to engage neuroplasticity.

Neuroplasticity refers to the mechanism your brain uses to rewire nerve cells and form new neural pathways. This is the main reason TBI patients can recover their abilities after injury.

Research indicates that repetitive actions engage neuroplasticity and cause changes in the brain. Therefore, if you want to regain an ability, you must exercise regularly.

2. Practice Therapy at Home

Physical therapy is an effective way to activate neuroplasticity and regain abilities. It helps patients rebuild physical strength, coordination, and flexibility after TBI. Plus, it increases blood flow to the brain, giving it the nutrients it needs to function and heal. Additionally, if occupational therapy and speech therapy are prescribed for you, these can be crucial for your recovery as well.

Unfortunately, going to therapy appointments only once or twice a week will only serve as a foundation of guidance for your recovery. The brain requires thousands of repetitions to generate permanent changes. This is not possible to achieve if you only practice therapy in the clinic twice per week.

Therefore, to boost your recovery chances, you must practice at home every day the exercises you learn at the clinic.

To help you remember your exercises, your therapist can write you a home exercise sheet. There are also home therapy devices, such as FitMi, which walk you through exercises in a fun and engaging manner.

Practicing your exercises at home every day will keep your brain stimulated and further increase your chances of making a full recovery from TBI.

3. Take a Holistic Approach

Taking a holistic approach to brain injury rehab is also a great way to maximize recovery. This simply means making sure you treat every aspect of your brain injury.

For example, besides physical, occupational, and speech therapy, include psychological care and cognitive training exercises as well. These treatments can help you improve your memory skills. They can also teach you how to more effectively cope with the emotional side of your injury.

Finally, following a healthy brain injury diet can improve brain function and promote a fuller recovery from TBI. 

4. Avoid Maladaptive Plasticity

While neuroplasticity can help you achieve a full recovery from TBI, it also comes with a downside. Therapists call this phenomenon maladaptive plasticity.

Maladaptive plasticity occurs when you consistently repeat an action the wrong way. For example, if you can’t move your right hand to pick up a cup, you might use your left hand instead.

However, if you continue to only use your left hand, eventually your brain will “forget” how to use your right hand. This leads to a condition known as learned non-use, and it can lead to permanent loss of function.

That’s why therapists recommend you incorporate restorative techniques into your recovery program. Restorative techniques teach you how to regain lost function, and not merely adapt.

Therefore, if your right hand is weak, try to resist the urge to do everything with your left hand. Instead, use your right hand as much as possible.

5. Push Through “Plateaus”

During the first six months after TBI, the brain enters a heightened state of plasticity. This means that therapy will have a more visible impact, and you can make rapid, sustained progress on your recovery.

However, after about six months, plasticity will decrease. As a result, you might feel like your recovery has stalled.

Therapists call these stalls plateaus, and they are a normal part of TBI recovery. But while your progress may have slowed, it has not ceased entirely.

In fact, you can still activate neuroplasticity, even during a plateau. The key is to persevere with your therapy exercises. With enough time and practice, you should begin to make progress again.

Conclusion:

I am doing a lot more now than I was 5 years ago, and I am still finding areas of my life where I can do things better than I previously had in the past.  So, what does that mean?  I am not done recovering!!  I think it means that even though I was provided information about hitting a ‘plateau’ I still feel like I am getting better.  Plus, I dare someone to tell or prove to me how I am not better now than I was 10 years ago!

I believe RECOVERY is in the eye of the beholder.  If you want to do more than you are currently doing, plan to get better!  I know that everything I have been able to practice, I’ve gotten better!  I encourage everyone to always try their best to be better than expected.  Personally, I have done this and it feels good when it is recognized by others.  You might want to try this.  It only takes time!!

 When I think about why I am not making a huge effort to do things that are ‘outside of my reach’. I’ll claim that my personal wants and needs have changed.  I loved playing basketball, but I can no longer play as well as I used to, so I do not have a desire to play on the level I had previously played.  I guess a lot goes into having a good understanding of what I went through back in 2003, and what that means to me now.  I have done a bunch of research and rehab, and I have also seen a number of survivors who are defying the odds, and I applaud them.  My quality of life is now different than it was back in 2003.  I no longer strive to be the best at everything, but I will challenge you to anything I can do “adaptively”!!

References:

“Can TBI Patients Fully Recover? How to Boost Recovery | Flint Rehab.” Flint Rehab, 25 Sept. 2020, https://www.flintrehab.com/can-tbi-patients-fully-recover/#:~:text=By%20far%20the%20best%20way,recover%20their%20abilities%20after%20injury.