A Mindset of Hope

A Mindset of Hope

Posted by AskNurseLinda on Jan 7, 2019 9:53 am

There are many opinions about paralysis recovery, in particular, spinal cord injury. An ongoing debate that is constantly discussed between those who believe recovery is soon to be discovered and those who choose to look at life from the point of paralysis, and you must adjust to it. This seems to be an odd debate as members on both sides are equal in their desire to improve the lives of those with paralysis from any point of view.

Historically, there had not been any viable recovery strategies so throughout the years, adapting to life with paralysis was the only option. Thinking about recovery was such a dream that reality did not allow for any wishful thinking about a return to a previous level of function. One of the hallmarks of healthcare education was to make sure individuals with paralysis did not develop any thoughts of recovery. If someone spoke of a chance of recovery, they should be immediately brought back to ‘reality’.

This is rather hard line thinking but since there was no other option, it was thought that this position would bring people into a phase of accepting life as it was now known to them. It wasn’t really such an unrealistic position as there were no options. It makes a lot of sense to think about a new reality where you achieve daily activities in a new way, still accomplishing the needs of your body but now done differently which is normal for you.

There has always been research performed to provide recovery to the nervous system, but it remained as much of an illusion as finding a solution to most neurological issues, even though there were some successes that were hidden along the way. One example was the techniques used for the treatment of polio that were met with varying levels of recovery. Still, polio is a virus and a person can recover from a virus.

I think a great deal of the polio recoveries were overlooked as the treatments did not necessarily rely on a pill or a surgery and, bingo, recovery. Instead, recovery from polio, if you survived the initial period and respiratory involvement, was therapy, therapy, therapy. The treatments were ongoing lasting sometimes for years. Some individuals had complete recoveries and others not so much. Polio treatment was not an all or nothing recovery. Some appeared to completely recover while many had ongoing challenges.

Other, more recent developments have been made in improvement and delay of symptoms in other neurological injury and disease. Rhythmic movement has been instrumental in the treatment of Parkinson’s disease, muscular dystrophy, and head injury among many others. The results are the same as for Polio. Certainly not a quick fix and not clear or consistent results.

The common theme of all treatments for neurological disorders is activity. The major action of activity is movement provided to the parts of the body that does not move or does not move so well. Movement might be enhanced by rhythm or perhaps the rhythm creates a pattern for interpretation by the brain. In any event, these mostly non-traditional treatments have been mostly overlooked, until recently.

Enter a new era in the treatment of spinal cord injury or paralysis in the 1980s and 1990s. Scientists looked back at some of these activity treatments. They started to recognize the possibilities. Yet, the thousands of years of thinking that there was not a possibility of recovery had to be overcome. It is very difficult to change the reality of thinking of thousands of years. A few bright scientists thought about new techniques but there was not much support for this new wave of thinking.

Enter Christopher Reeve. A sportsman. An avid athlete. Most importantly, a deep thinker. A man who sustained a spinal cord injury. A person unencumbered by thousands of years of thinking ‘no’. Of course, like anyone with a spinal cord injury, deeply traumatized by this life changing event. He went through the motions of acquiring a new way of doing things but was not satisfied with life as is. Because of his open mindedness, he was able to think about the links between activity and recovery. It made sense.

A new world of thinking about spinal cord injury began. Hope. Hope for the future. It would take time, but possibilities exist. Christopher Reeve volunteered as subject number one for activity-based recovery, not even knowing exactly what it would be, what would work or how long it would take. He started on a plan of four known treatments, electrical stimulation, standing, patterned walking and aquatic therapy. All of these therapies were in existence but typically a person only engaged in one if any at all. This rigorous and intensive schedule of therapy was far more than typical. Recovery became a full-time job.

It worked. Sensation was 70% of normal. Very good considering the starting point was zero sensation. Christopher Reeve was able to independently move every joint in his body-but not against gravity. With support for his body, he could take steps in the pool and walk. He could walk, using a rhythmic stepping, in the partial weight supported walker. Trunk control and balance remained challenges.

As time has progressed and more scientists have become interested in activity-based therapies, much of the treatments have become refined. The ‘dosing’ or how much therapy is being identified. As technology has improved, the therapeutic devices have become smaller, even implantable into the body. Huge leaps ahead with more to come. Hope moved to the forefront.

These therapies are still not available for everyone as the development continues. There will be many more improvements before much of this therapy becomes a standard of care. In many ways, that is a good thing. The therapies are still very cumbersome and just being tested. As the technology improves and scientific advancements are made, the treatments will become much more accessible to more people, easier to use and acquire. Perhaps no longer a full-time job.

This is the fundamental beginning of the Hope movement. Those of us who believe that these treatments will be accessible in the near future have this goal. It is an extremely huge shift away from the past way of thinking about no possibilities. There are hundreds of different treatments being studied. Many will become new treatments and cures for the future. We only have to stay tuned to see what will happen next.

So who is right? Those that stick to the old way of thinking, adjust to life with paralysis or those who are hopeful for the future? Probably, both are right. My opinion is that we have to be pragmatic. Life is what it is today. You have to learn to care for your body in its current condition is so you can be ready for the future treatments of spinal cord injury. The answer to spinal cord injury and paralysis probably will be in several forms: therapy, medication, surgery, stem cells, perhaps even gene therapy to correct the injury or disease internally.

It will be up to you to decide which path you want to choose. Stay as is or hope for the future. There really is no right answer. Every person needs to keep their minds where it most benefits them. Some people prefer to live in the current time. Too much thinking about the future does not serve them for getting through today. Others need the vision to keep going. Most people need a good mixture of both.

As Christopher Reeve’s motto: Forward. Keep looking to the future, remember the past but always strive for the future. After all, we all have a future. Nurse Linda

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