A Crazy Conversation with my Kids!

The other day, one of the kids mentioned me being paralyzed from my belly button down. I said, “What?!!! What are you talking about? I have never been paralyzed from belly button down! I can’t feel anything from my chest down and spotty feelings in my arms/hands! Where did you get that?!”

They said, “Mom, you have always told us belly button down.” I was so confused. My youngest son said, “No, you always said chest down.” So my oldest daughter got called. She said, “You used to say belly button down but the last few years you say chest down.”

As you can imagine, I could not understand this confusion! I wondered how my own family could be so confused!!! I started to chalk it up to being little and not understanding but too many were saying this.

Then it hit me! I knew EXACTLY what it was! It is the difference between damage levels, sensation levels and motor function levels. And yes…they can ALL be different, and they can change!

This morning, on a Facebook page, a lady posted wondering if there was anyone out there like her who was a C6/C7 incomplete quad, but functioned like a T10 complete. I grinned. “Yeah, sweetie. I gotcha. And it is confusing isn’t it? Just ask my kids!!”

Since that is in my mind after answering her, I thought I should share it over here.

Damage Level:

This is the level your spinal cord was damaged. Literally. My spinal cord was damaged from a virus that attacked it and caused swelling that killed those nerve connections and paralyzed me. My level of damage was the fifth through the seventh cervical vertebrae, hence the C5-C7 incomplete quadriplegia diagnosis.

Sensation Level:

This is test of what you can actually feel or not. They will test light touch vs deep pressure (cotton swab over different areas and mashing your toe very hard). They will test if you can feel vibration or not and at what level if so (they gong this metal thing and hold it to certain bones like your ankle bone and you tell them if you feel it and tell them when you stop feeling it if you do). They will test if you can distinguish hot vs cold (again with a metal thing.) They will test if your eyes are closed, can you tell where your leg is (Down? Up? Bent?) in space. They will test if you can feel pinpricks (they poke you with a little needle and you have to tell them if it feels sharp, dull or if you even know they pricked you at all).

From day one for me, my sensation levels have never changed:

  • I can feel some deep pressure if it is extreme. I can’t feel someone sitting on my lap, but I would feel deep pressure if you jumped on my feet.
  • I feel no temperature or pin prick or light touch from the top of my chest down in the front, and a tiny bit lower in the back (about my bra strap).
  • I feel no light touch or pin prick on the outside of my entire right arm, but I can on the inside. I can feel hot or cold on my arms and hands, but it is very unusual and changes. Sometimes, lukewarm water feels extremely hot or extremely cold (like boiling vs iced), but it is just the sink normal water. Sometimes, I can’t really feel a temperature at all. I can feel it is wet, but it feels more like a buzzing than a temperature. It is very weird, but I am used to it. There have been many times I was holding something and the kids insist I put it down because it is too hot but I don’t know it it. It doesn’t feel hot to me. Just slightly warm. On the other hand, I cannot stand to touch anything cold. It is horrifically painful for my hands to touch cold things. Like electrocution painful. I cannot drive and touch a cold steering wheel without gloves or my sleeves over my hands. So my hands are very odd with sensation and always have been. Other than my hands which are equal, I can feel light touch on my left arm, but I cannot feel the pinprick as sharp. It just feels dull, but I do feel it. In conclusion, if this section, my arms and hands are the hardest to describe because I do not have loss of all feeling, and I do not have full feeling. I have feeling but very different.
  • I can feel strong vibration all over, when the gong first starts but it stops quickly.
  • If you were to have me close my eyes and you moved my legs around, I cannot tell you where they are, but I can tell you have moved them. I can’t feel you touching them, but I would know if they were majorly repositioned. (Maybe the leg bone IS connected to the neck bone!) It is very weird. I can tell when I am extremely uncomfortable and need repositioned, but I would have no clue what position I am in until I look.

Those are my “sensations are pretty consistent with a C5-C7 injury. Being an incomplete is what makes my “description” unique and totally different than another person with a C5-C7 incomplete injury. We get very “snowflakish” in our individual sensations and functions.

Motor Function:

This is what has changed for me over time. From the initial paralysis day…

  • My left side is weaker than my right side. I always fell to the left.
  • My triceps have always been weaker than my biceps. I couldn’t transfer myself.
  • My core…my ab muscles…were very weak. I couldn’t sit up or roll over or move by myself.
  • My fingers, hands and arms moved and worked but responded slow…like a slow motion movie. But they moved! The response time from my brain to my upper body was much slower.
  • From my lower abs (a little higher than belly button) down, nothing worked.

In therapy, they work hard to teach you to compensate weak muscles with stronger ones and they work hard to try to get some signals back to your body through intense repetition and targeting muscles.

In therapy:

  • My arms go stronger. My triceps stayed weaker, but my biceps got stronger. My shoulders got stronger.
  • My upper abs got a little stronger and I learned to sit up, roll over, and transfer alone.
  • I could move my big toe on a good day, and my quads would fire when the therapist poked them and would ask me to engage them. I’m still not sure if I did that or if he was triggering a spasm with the taps, but either way, it was movement. I never gained enough quad strength to lock my knees but I could see the muscle fire when he tapped.
  • I learned how to compensate with muscles that were getting signal and “cheat” with my body to make it function. I learned to throw my shoulder hard when I need extra arm strength. I learned how to position my weaker muscles in ways to help them…like turning my arm to lock my elbow in place for transferring or sitting up instead of depending on my tricep to lock it in place

Over the years, I have learned that every neurologist is different in how they classify or diagnose you. I have seen multiple neurologists over the last 11 years and they all say different things. My very first neuro diagnosed based on your lowest level of function. So, he diagnosed me as a T10 paraplegic because I could move my toe some. This was before they could even do an MRI, I was still pregnant and not able to lay on my back without passing out cold. Honestly, looking back and all I know now, I don’t know how this guy qualified as a neurologist. He was horrible and I hated him from the get go. That is strong but it is true. I feel he dropped the ball in so many ways. He is also the one that wanted my baby doctor to deliver my baby at 20 weeks. What a moron.

The next team of neurologists at Cleveland Clinic saw the damage at the C5-C7 level and only talked about the diagnostic levels. Their job was to figure out what caused this. They were very kind and compassionate and felt a virus had attacked my spinal cord. They said there was no way to know what virus unless they took a biopsy of it, but they didn’t do that on people who were alive. But they never gave me a “diagnosis”. Instead, they ruled out the hundreds of other things it could have been through 8 days of intense tests and procedures. They are the ones that set me up with long-term (a year) physical and occupational therapy where I did my rehab which was vital but had been non-existent so far. I was paralyzed in March. I didn’t have any therapy until November. Again, that original neurologist absolutely dropped the ball on my care.

My physical therapist was the first one to talk to me about the differences in diagnostic vs sensation vs function. His job was to take current function and try to get a better result. I learned more from him about the movement (or lack of) of my body and how to live in it than anyone else up to that point.

My next neurologist (a neuroimmunologist) taught me about all the secondary issues and to understand all the strange complications of a spinal cord injury. It was also through him and new MRI’s and his specialty practice that I finally had a name to what had happened to me…Idiopathic Transverse Myelitis…which is a fancy description that says “something unknown (idiopathic), has caused inflammation (myelitis) across the entire segment of your spinal cord (transverse)”. That unknown inflammation that they believe was caused by the pink eye virus I had two days before, extended from my C5-C7 spinal cord segments in my neck and paralyzed me. I am an “incomplete” because I have some function and some sensation in the areas that are affected. If I was a complete injury, I would have no sensation or function below those spinal cord control areas (which is basically shoulders down at the C5 level). This neurologist helped me in so many “hidden ways” that went way beyond walking or not.

My next neurologist did a new assessment about 6 years ago when I moved to SC. He was actually a spinal cord injury doctor and dealt exclusively with those like me instead of handling all neurology (like seizures or Parkinson’s or even migraines). He did the most comprehensive testing I had ever had done on me. Because my upper body functioned so well as to the parts you could see (for example, you can’t see the weird sensations my arms and hands have always felt) most of my neurologist would test only my lower body for sensation, movement, etc. However, this doctor started with my face and moved down. It was the day that absolutely startled myself because I had learned to compensate so well and cheat with my upper body, that when he isolated my muscles and tested them individually, I was shocked at how weak certain muscles were. For example, I could not keep him from pushing my fingers together. I couldn’t lift my arms against any pressure from him at all. I was diagnosed clearly that day as a C5-C7 incomplete quadriplegic and I believe that is the first day I was shocked to realize how affected my upper body truly was. It was also the first time I had been called a quadriplegic so clearly…and the first time it actually hit me how affected my upper body was. I remember crying as he tested me. It was a real eye opener.

About 2 years ago, I started getting progressively and dramatically (to me at least) weaker in my upper body.

  • My weaker upper abs that I had depended on, where totally gone. I had nothing and I greatly struggled to sit up or roll over alone any longer (like those early days!)
  • My arm strength just disappeared little by little. I kept trying to lift weight like I had loved to do, but I literally couldn’t. I was lifting about 50 lbs from my lap and now I could barely lift 10!
  • My left arm/wrist/hand was so weak I struggled to hold a coffee cup. My right hand was weaker too although it is consistently stronger than my left.
  • My hands were waking up clenched tightly and so stiff it takes me hours to limber them and I have to work on th all day stretching them to keep them from curling in. They are weak that I cannot fight the stiffness. If I can keep them limber, I have enough strength to move them independently, so I keep them stretched all day long.
  • The fine motor skills in my fingers are completely gone some days and tap out pretty quickly on good days. I can’t play the guitar anymore at all on bad hand days and on the good days, I can get a couple songs out and then I can’t get my fingers to obey anymore. The piano is easier for my left hand because it doesn’t take as much movement for my fingers. I can just push the keys down and can cheat through some of that also with just the base note. I make myself play both instruments though as my own therapy for my hands.
  • My shoulders were so much weaker I couldn’t compensate to push myself over anything that wasn’t completely level and smooth.

Off to the neurologist again. He ran many more tests to make sure nothing new was going on and sent me to therapy to get stronger. After many months in therapy again, zero strength returned and this is now my new normal. The therapist and doctors all agree that I overused my weaker upper body muscles for all those years and those weakened upper body nerves had neuronal burnout…I literally used them to death. Can anyone say overachiever? 🙂

Doing therapy again, did help in two ways. First of all, they were able to teach me new skills that depended less on strength and more on form and momentum. It has been helpful to think through new scenarios and now think “how can I power my way through this” and instead think “how can I navigate through this.” Secondly, my spasms started towards the end of my first time in therapy (about a year out) which often happens with some nerve return. That return gets returned with a wonderful gift called spasms. Nerves are trying to fire but they lack any control. The second round of therapy that I went through a couple years ago taught me how to use those spasms and spasticity to my advantage. This is still a learning game to me because spasms truly can be unpredictable but I have learned how to trigger a spasm to help me if I need to. That has been a big help!

I was sent to a new seating clinic and needed a new seating system so I could sit upright in my manual chair. Without it, it took so much energy to literally just try to sit up in my wheelchair that I was miserable every day. They new seating system helped so much although I am still not able to sit longer than about 6 hours in my manual chair without getting a bad headache from the strain of holding my neck up to balance my entire upper body. They also told me that I had to start using a power chair. This was a big blow to me but I had dear friends who helped me get over my pride. I have no clue what stigma I had placed on myself but it was there! Now it is totally gone and I don’t care!

I do use my manual chair daily in my home but use my power more and more as my arms and hands have weakened. The trade off is less exercise, but also less pain and fatigue and more independent function in my power. I cling to my independence and if a power chair helps with maintaining that for longer years, then so be it!

So, as you can see, diagnosis level is the same. Sensation level is the same. But function level has changed over the years. I always say that my “incompleteness has just become less incomplete.” I am thankful for any function I have!

The spinal cord is extremely complicated and so an injury to it will also be complicated. It is confusing to neurology at times, has been very confusing to me, and it is no wonder my kids have also been confused!

I think the take-away for all of us is that changes do occur. Get everything checked out! But just know, many times change is the nature of the SCI injury beast and changes can happen for better or for worse, but it is not unusual for changes to happen over the years.

As for me, I am much more vigilant now to know the level of my injury and the decline that could continue to happen. I need to take good care of this body and budget the abilities I do or do not have so that I can have long-term independence.

6 thoughts on “A Crazy Conversation with my Kids!

  1. That was very eye-opening to me. I have demyelinating neuropathy and am not paralyzed but can’t feel much in my feet. Yet they burn! Anyway, the body sure is a complicated mystery and I want to learn more. Neuronal burnout is a new concept. Prayers for your continued independence and for the best life you can have! Thank you for sharing again. ❤️

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  2. I just happened upon your blog in the Reader, and I’m grateful you took the time to write this. I learned a lot!

    I developed an autoimmune condition a few years ago, and it is such a process coming to terms with it. I find it incredibly helpful and empowering reading about how people cope with their own physical differences, often so much more comprehensive than mine. You can learn a lot from someone else’s journey, I think.

    Your comment about the “stigma I had placed on myself ” hits close to home. I didn’t share my RA diagnosis outside my immediate family for almost a year, hiding alone at home waiting to be “normal”, “better”, back to “myself.” Suffering, alone, but for no real reason. Just pride, and in the face of nothing I would judge a friend for experiencing! Eventually, I had to realize that my new normal was really NORMAL now. Even if that was, Ugh!

    Anyway, I have heard similar thoughts from RA Warrior (a website hosted by a non-medical person) about what you’ve termed “neuronal burnout.” My doctors can’t really tell me whether to push (when that leads to days of incapacity and pain) through mild exercise or to spare myself, knowing that the cost of inactivity is poor health, weight gain, loss of muscle tone… It’s left totally up to me to decide if I should “use [my strength] or lose it,” or if I’m actually “using it up” and maybe doing permanent harm.

    That may be the worst part of my diagnosis–the uncertainty!

    I love that your story, told here, includes a progression from dreadful health provider to better ones. Finding a good doctor is so important, but can be so hard.

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  3. Hi Alicia, God Bless You! I so enjoy reading your stories on your life. You have an uncanny ability to speak so plainly about complicated subject matter and feelings. When I read your stories, they give me peace and strength to keep going. I am always having a new understanding and perspective on living with paralysis. Craig Hospital in Colorado should have you as a guest speaker! When are you going to write a book?

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