Hello,
I’m new to this forum, so I’ll say ‘Hi’ to you all. My name is Barbara, I am from the UK and I had an accident in 2002, where I fell backwards and smashed my head on a low stone windowsill, about a foot off the ground. This sharply twisted my neck to my left and forced my head forwards. I had a miriad of symptoms, some immediate and some which crept up on me very insidiously and, as this forum topic is about paralysis, I would like to tell you about my experience of it and, more importantly, how I stopped it. It has definately been the most horrific of my symptoms.
Within a short time of my accident I started to experience intermittent tingling in my hand, at first I noticed it during the daytime, in particular, when I was stationary in traffic. There were two things that eventually became apparent. The first was that I had to have my hands below my heart level, in order to avoid having ‘circulatory’ hand problems, so I had to keep them low on the steering wheel when driving. The second and probably the most important thing I noticed, in relation to what was to come, was that looking down (with my head in flexion) had something to do with the tingling.
Now the intermittent tingling that only started in one hand during the day, started to affect me at night when I was dropping off to sleep and I was waking up with it too. As if it wasn’t enough to wake up cold and clammy with my heart racing and gasping for breath !
Eventually, over the weeks and months, the tingling started to affect the other hand, then it began to spread up my arms, then it started to affect my feet as well, then up my legs, after some months it had spread to my lower abdomen. I was scared and no-one in the medical field was helping me. The trouble was that by the time I was up and out of bed it dissipated, so no-one ever got to examine me in this ‘state’.
This was was only the tip of the iceberg, little did I know what was to come. It continued to spread, affecting more and more of my body, over time the tingling turned to numbness, it even affected my scalp, then my tongue. When you wake up with everything numb, including your tongue with your lips pursed and barely able to utter a sound, you know you’re in trouble! This was happening 3 times a night. I was waking up every 2-3 hours in this state. It didn’t stop there, the tingling that had progressed to numbness had now progressed to excrutiating pain (the worse you could possibly imagine) and the only way I could get out of this state was to move each muscle individually, VERY SLOWLY – which worsened the pain!!! It was taking me 40 minutes to get up out of bed, to get rid of the pain – every 2-3 hours.
I noticed that, during the day, so long as I was moving, I seemed relatively ok, other than the hundreds of fasciculations (muscle twitches) I was now getting, everywhere. Also when I slept during the day, the symptoms weren’t as bad, was it because the room was warmer, or was it down to position? Being an analyst I decided to study how my symptoms reacted to different sleeping positions and I found that each position had different effects on my symptoms but I found that sleeping more sitting up was the best. I was sleeping more upright on the sofa, during the day.
One very important observation I made, was that when I woke up feeling dreadful, my chin was also right down onto my chest, not a position I particularly remember being able to achieve before my fall, this was the key. Another observation I made was that my urine PH was so low it was nearly off the scale. Now after 5 years of enduring this (how I managed to survive it and retain my sanity, I just don’t know!!) I managed to get a referral to Spinal Injuries and they fitted me with a Philadelphia Collar and Brace – WOW the pain reduced to a 3/10 OVERNIGHT and I actually slept 5 hours solid, for the first time in YEARS.
Over time, lots of things started to heal, the arrhythmias became less, the fasciculations were less often, less intense etc, it was marvelous. I would never have thought that, after being so ill, for so long, that I could ever recover to that degree from it. I still have a long way to go but I can witness that the body is an amazing piece of engineering and that, given the right help can repair itself, given time. Let’s hope that Dr Diana’s hard-working efforts can be the start, or a continuence of the healing process for us all, that we can start to participate in life again.
Regards
Barbara (UK)