Neuro Orthopedic Institute
I hope its warm where you are.
I was transferring my photo of the day, and this colorful ‘mistake’ happened. It seemed appropriate to this post so I have left it. The original is posted below.
Its gotten real windy and the rain clouds are here. I already knew they were on their way. The type of pain in my right arm and leg changes a little before, now, I know the signs. Its a weirdly deep pain, and much more of an attention grabber.
I spent a lot of time in the warm water yesterday, but, there wasn’t much exercise or prayer. Frankly, I could hardly move so I let the water do its thing.
I did think positively because, as I might have explained, I believe in the power of water, both within our body and out, to be a powerful medium of thoughts and actions. The water of my daily soak is a healing companion.
As I am now starting to understand, I probably do have CPRS, probably not CPRS-I, but II, with nerve damage. I still have not heard from my doctor about the PT’s report they said they were sending her.
Having finally started physical therapy, I can be much more directed in my own work at home. Before, with the constant doubt, and confusion from the doctors due to the complexity of the condition, visits have been very frustrating. I have been asking to see a specialist, but, I kept getting the strange blank stares.
Now, armed with more information, I am able to work as a very dedicated partner in healing, no insurance approval needed.
After a few months of seeing that incredulous face staring back at me, and the horrible emotional strain following those appointments, I realized my health required that I stop putting my self before the doctor as the only source of my healing. This is when I started the mantra, ‘I am the doctor.’
I believe that switch emotionally, and mentally -neurologically- helped me tremendously.
As did my mindset only a few short weeks after the injury, when I had learned the frightening level of pain that CPRS can bring.
LEAN INTO THE CHANGE
I remember laying in utter pain on the couch. My son was doing his homework, but he too was suffering and stressed. I did my very best to make dinner, carefully doing everything so as not to cause more pain, but, it didn’t matter, every movement was so painful I was grunting with every movement.
Finally, the meal prepared the best I could, we sat down to eat.
My son was visibly upset. I am sure he was scared. I am his only parent, and seeing me suddenly unable to move like before, was deeply scary for us both. I was having difficulty adjusting myself, but, I knew my son needed my help more.
It was in that moment I made a choice. That evening, I shared with my son that life does not guarantee anything. We do our best, and go about our lives, but sometimes, unexpected changes come about suddenly.
What we do in the face of that challenge makes a world of difference.
I shared with my son (and myself) all the things I gave gratitude, for all I was able to do in my life.
I thought of how I had made the most use of my legs getting myself around, dancing from the time I could, travels to distant places, these legs had carried me many places, and I was deeply grateful at that time that I had been able to do so much of what I had hoped.
I was now required to learn something new, and there were going to be important lessons for us both. (Not the least of which, having better, or, any, medical insurance).
I pledged to him that I would do the very best I could. In place of resisting, I’d lean in, learn all I could about the condition, and give my all to regaining use of my arm.
I didn’t know only a few short weeks later, the pain from walking would completely debilitate my ability to get around. I also had no idea that, soon, I’d be told by the neurologist CPRS doesn’t travel , or that it would be a whole other 2 years before I was seen by a PT.
I know this experience is one so many people have, even with the best of medical insurance.
NEURO ORTHOPEDIC INSTITUTE
In researching CPRS, I learned early on about the importance of new discoveries in neuroscience, clues that point to the brain as one of the keys to treating CPRS.
When my physical therapist brought up mirror therapy – which we will try tomorrow on my leg – she also invited me to learn more about the treatment from the Neuro Orthopedic Institute, a site where you can also find out more about the exciting research being conducted for CPRS-1 patients and people with complex pain conditions.
I have noticed a lot of the research on CPRS is coming out of Australia and the Netherlands, and its very encouraging. The NOI group has as its motto: ‘Healthy notions of self through neuroscience knowledge.’ Nice vision, very empowering.
I will check tomorrow with the PT whether, or how, the nerve damage impacts the diagnosis – does this mean I have CPRS II?
I also took the step today to call my doctor and ask for a new diagnosis in writing based on the work with the physical therapist.
I must admit, I thought my PT appointment was last Friday as that’s been the day of my last two appointments. A very kind message from the PT on Thursday afternoon to find out if I was o.k. and why I missed my appointment, made it clear I had missed my appointment. The automated appointment confirmation message from the hospital stopped just short of the time and date. We rescheduled for Tuesday.
Tomorrow, I will find out more about whether the nerve damage means I have CPRS II.
The reason I asked the PT this question previously is because one can have nerve damage but not CPRS. Since I have only had one recent EMG, during which the pain was apparently so high the technician could not read the report properly. I’ve asked my PT whether my right arm and leg nerves will be tested again. She says only my doctor can make that referral.
In viewing the very helpful material from NOI, I realized the treatments speak to CPRS I. Either way, and for those who have CPRS-I, this video is pretty amazing.
THE BRAIN – OUR PARTNER
I have become fascinated with neuroscience since this all began, and the research described in this video from NOI points to the incredible resilience of the brain, and its ability to be our greatest partner in the healing process.
I think this encouraging information will give hope to people because, often, in those first few months, the sudden isolation in the first phase of CPRS, is tough, and it can be hard to hold on to hope.
Now, we know from this research, just how important our brain is to healing.
In the video linked below, David Butler shares a pretty amazing fact. The brain not only has the ability to respond to real movement, but also perceived or visualized movement.
This natural neuro activity is the way into the brain with mirror technology, using the brain’s ability to react exactly the same to perceived as to actual movement.
Since I ‘graduated’ during my last therapy session, I will be working with mirror therapy tomorrow. To show my brain the side that works well, and convince my brain its the side with the nerve damage, but without pain, to push the brain on to heal.
I am a little confused by this all, and whether I can heal nerve damage with mirror therapy. It seems nerve damage requires a different approach, but I still do not know much about this all. Let’s see what information I can find out tomorrow.
What’s very cool about the research David Butler presents is that our brain can be helping us the whole remainder of the time we are not seen in the doctor’s office, those deep gulfs of time and space when great fears can creep in.
Early on though, in reading more about the neuroscience, I realized the positive state of my mind was crucial. I must admit, keeping positivity in the face of the medical doubt and delays, and, physically struggling with homelessness and poverty, I lost perspective many times.
Since visits to the doctors were painful encounters, I began to notice the peace in between. To survive mentally, I told myself I was the doctor. Now, I am starting to realize my mantra was not just a mediation tool, but, an actual intuition towards my own brain’s ability to heal.
You can listen and watch David Butler’s presentation on Graded Motor Imagery.
GINGER’s HEALING IMPACT
As I mentioned, I have been working with ginger ever since the PT confirmed the nerve damage. I continue to feel overall benefits in my health that I enjoy, and I have noticed over the last week, fewer changes in blood flow on the outside of my right leg.
Yesterday, I had terrible shaking on my right side, feeling so strong, it was like an earthquake was rumbling through, and the nerves through my body were firing off.
TECHNOLOGY CAN CONNECT US TO INFORMATION
Keep that in mind today – we are lucky to have this intuitive healing research available and accessible online. Counting the positives was also a big healing tool, so I often realized how lucky, if one is disabled, to be so in this day and age, when there is thankfully still a world and way in which to participate, for the speed with which patients can connect to each other and experts, and, innovative researchers like those at NOI who are educating doctors and physical therapists from around the world.