From separate conversations recently, I realized that the specifics of my paralysis and immobility are not fully understood by some persons who are following my journey with Guillain-Barré Syndrome (GBS) & Neurogenic Heterotopic Ossification (NHO). At first I was surprised, in my opinion I write (and speak) about my pain levels and physical limitations incessantly, in fact the instances where my finger hovers over the delete button while I mentally debate over repeating information occur often. Regardless, as the blog / Facebook page is to promote awareness of the effects of GBS & NHO and clarity is the precursor for true understanding here goes … 

First, let me admit that before becoming ill with GBS my knowledge of paralysis and the intricacies of muscle and nerve function was basic at best. I viewed paralysis as a one-dimensional condition in which a person was incapable of feeling or moving their limbs / body. Furthermore, the concepts of paralysis and immobility were interchangeable. Now I know without a doubt that the realities are much more complex and that particular viewpoint was flawed.

In the simplest medical terms: paralysis is the loss of voluntary muscle function (movement) and sometimes sensation (physical feeling) in part or most of the body. It occurs when the motor nerves responsible for producing movement and the sensory nerves responsible for allowing a person to detect pain, touch, temperature changes and body position are damaged and stop working. Paralysis can be classified as partial or total and the condition can be temporary or permanent. Each case is different, two persons can be classified as paraplegic but have varying symptoms and physical capabilities. Generally, differences are related to the extent of the nerve damage and the nerve set that was affected by the injury, accident or illness. Paralysis associated with GBS can be partial or total and is deemed temporary as it is expected to be reversed after the acute stage of the illness. Most important to note is that unlike immobility of a joint, which without exception is the total lack of movement (both voluntary and involuntary), paralysis is not always distinct or consistent throughout the body.

In terms relevant to me: On the onset of GBS, I was totally paralyzed in my face, torso and all four limbs. Now, the existing paresis is predominantly in my legs and feet. There is absolutely no muscle function in my hips however my thigh muscles work well enough to allow my knees to bend. Below the knee, muscle function is extremely limited and prevents full voluntary movement at my ankles or toes. With sensation, the variations are also disjointed. For instance, when I’m using the TENS machine on my hips and thighs, I can turn the dial to an intensity of 6 on my glutes and hamstrings but can only tolerate 3-4 on my quadriceps. In contrast, because I have no sensation below the knees, the dial can be at the maximum of 8 and I feel absolutely nothing. The immobility factor follows a similar pattern to muscle function, there is complete immobility at the hip joints, full mobility at the knees but only involuntary movement (e.g. passive range of motion exercises completed by a physical therapist) at the ankles.

In addition, consider this: when I stand, I do not have position sense of my feet – I instinctively look down each time for visually confirmation as I cannot feel them under me. If I am touched, I do not actually feel the presence of someone’s hand on my skin, I just experience intense pain from hypersensitivity. If my feet are placed in water I cannot decipher what the temperature of the water is but if you rub my feet with a methylated rub it burns. Are you intrigued? I am! I sometimes think that if GBS and its’ effects were not so utterly devastating they could actually be fascinating.

Of course, that fascination quickly fades. Lack of muscle function and immobility at this level makes completing any of the actions illustrated below impossible.

Possible Range of Motion: Hips, Ankles & Toes

In isolation they may not seem like significant actions but when you combine them, they contribute to movement in every aspect of daily life. Everything from something as trivial as the ability to wear a pair of flip-flops to the critical issue of personal hygiene to my ultimate goal of walking again, becomes very relevant and too complicated.

                 Guillain-Barré Syndrome » Paralysis & Pain » Heterotopic Ossification » Immobility 

31st October, 2017: 635 days with GBS & NHO provides a profound clarity on the present and a distinct focus and vision for the future.

*** I will not limit my vision based on my current situation ***


About Dawn Drayton-GBS

In February, 2016 I was diagnosed with Guillain-Barré Syndrome (GBS). To mark my one year anniversary I have launched this blog. I am hopeful that by sharing my journey I can not only motivate myself and others but also raise awareness of GBS and it's devastating effects on your physical, emotional and mental health.
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