The First Stages of Treatment

I started my first stage of treatment at Physioactive in Concord in the month of November 2009.  First I started with a Physiotherapist.  He was amazing.  The first person who I had seen who understood my symptoms, the muscles, the nervous system and how every part of my body was affected.  He treated me for about 6 months, twice a week to start.  He worked on my neck most of the time, hardly touching me, applying very little pressure but achieving much relief.  He gave me exercises to do on my own as well, each week adding something new for me to work on myself in between appointments.  In December, I met the Doctor at the Movement Disorders Clinic at Toronto Western Hospital.  He was extremely attentive.  He sat beside me taking notes on his PC throughout the appointment, not in any rush, entirely devoted to his time to me.  He examined my neck, did a series of simple tests like having me try to move my hands quickly in different motions.  He had me try to move my neck back and forth, up and down.  While doing so, it set the Dystonia off and my head started bobbing again.  He watched me try to walk, all the time taking notes on his PC.  He wanted to set up an appointment for Botox injections, but I already had an appointment set up with Dr. Ko.  He suggested I wait then for four months for a follow up appointment where he would properly test me using a machine to measure the speed of my muscles at rest and then follow up with Botox injections again at that time.  He wanted to ensure the botox had fully worn off before doing the tests.  A week later, I had my first set of Botox injections in Dr. Ko's office again with my supportive husband at my side.  There was an Osteopath present in the room at the same time to do an initial examination and help decide where to do the injections.  Because I did have some ligament damage in my neck due to car accident several years ago, they decided to do a PRP (Platelet Rich Plasma Therapy) as well as the Botox injections.  At first I was overwhelmed with 2 nurses, the Doctor and an Osteopath working on me but soon felt at ease at least with the procedure.  Being a human pin cushion isn't fun by any means, but this was just the start of it.  I'm not sure I will ever get used to being jabbed though no matter how many times I have been through it.  Everyone was courteous and friendly trying to make the experience as pleasant as possible.  I was hooked up to a machine that measured the noise level of my muscles at rest.  As the botox was injected, you could actually hear the muscle relax and go quiet.  On to the next muscle, until he finished around my neck and did a couple on my lower back.  They had previously taken some blood from my arm to do the PRP procedure and injected that into my damaged ligament in my neck.  My husband drove me home.  I lay on the couch for the rest of the day with an ice pack wrapped around my poor poked neck.  The procedure worked.  It took about a week to notice a difference, but there definitely was a difference.  I was still working at this time and found the Botox to provide major relief.  I could move my neck from side to side much easier as well as up and down.  I was still only able to work a few hours a day and never arrived before 10am.  I just couldn't get out of bed and be functional any sooner.  I wore flip flops around the house because I couldn't stand the pain of the bare floor on bottom of my feet.  I would be totally stiff when I awoke, shuffle my way to the shower and thaw myself out on high heat and the water just blasting on my body before I could move to dress or put makeup on.  The Botox at least stopped the bobs, for now anyway.