Me and My Dystonia

This is a blog describing my trials, my journal about living with Dystonia.  I created this painting to help explain to others what exactly I was, am still feeling.  It is so difficult for others to understand what I, and others like me are going through because to them we still look the same.  No one at Yoga or at my Ballet class would ever guess there was anything wrong with me.  Yet, if I go out for dinner or sit for any length of time, I cannot walk away from the table without assistance.  I cannot walk around a mall.  I cannot sit through the theatre or movie.  I cannot fly in excess of 3 hours without assistance.  I cannot sit in a car in excess of an hour without laying down in the backseat.  I cannot get my hair cut unless I wash it at home and they do not comb and blow it dry.  My hair is almost to my waist.  I had to buy a new bicycle that let me sit perfectly upright.  I can no longer work.  I was an accountant from the age of 17 but sitting at a desk or leaning over a computer is no longer possible.  I type this on a laptop actually placed on my lap as I lay down with my feet up.  My life has changed dramatically and I and my family have had to adjust.  I am in pain almost constantly.  Pain is just a part of life now.  I have sudden bursts of energy, but it is costly.  I pay for it in long periods of fatigue where I can do nothing but lay on the couch and watch movies.  I used to be so athletic and so full of energy.  I was invincible or at least I thought so......

Here is my story.

The Beginning

It all started just over 2 years ago now, the major collapse anyway.  I awoke March 7th, 2009, in the middle of the night.  I was feverish, no just hot, really hot.  I got up, walked down the hall, reduced the temperature on the thermostat, started back to the bedroom, felt nauseous and headed for the washroom.  I stood there for a few moments, thought I was okay and started my way back to the bedroom, only just a few feet away.  The world revolved, I saw nothing, but felt the carpet on my face as I hit the floor. There I lay for a while until my strength returned, got up and crawled back into bed.  In the morning I awoke and carried on as usual.  As the week progressed, I found myself experiencing dizzy spells at work, the arches in my feet ached, my calves ached and I just felt odd.  My husband and I had reservations for that upcoming weekend to go skiing in Quebec for a few days.  We were to have a romantic ski week in this beautiful little bed and breakfast in Sutton, a 7.5 hour drive.  I was excited to go, but nervous since I wasn't feeling "myself".  My husband John and I thought it must be just a touch of the flu as all kinds of colds and bugs were going through the office.  By Thursday, I had a definite limp. Friday, still having not missed a day of work went as usual, but I knew there was something wrong and I was really limping, constantly.  Later that evening John packed up the car with our ski equipment and we were set to leave first thing the following morning.  I was exhausted and found it difficult to pack, just throwing anything into the suitcase.  Definitely not the normal me.  I was sick, but we were going anyway.  I awoke the following morning still exhausted and hurting everywhere.  We loaded our suitcase and me into the car and off we drove.  I think our first stop was in Bellville, I needed Tylenol, Advil or something.  I had pain everywhere.  My Achilles tendon on my right ankle, my big toe, my left knee, my right elbow, my hands ached, my neck hurt.  The pain kept rotating from joint to joint.  I thought if this the flu it must be bad.  The next stop, Kingston, we picked up some Voltaren cream, I bathed in it.  At this point as we were driving I had my feet up on the dashboard and my seat as far back as it could go.  I was in agony.  We stopped again later for lunch.  I just kept popping the Advil.  From here to the finish line was total torture, I was counting the minutes, the miles, just persevering the drive, we were too far now to turn around.  Finally we arrived.  I sat in the lobby while John registered us and carried our suitcase upstairs.  I laid on the bed stretched out, still managing to hold back the tears.  The pain, the pain.  John went out for a walk, found the liquor store, bought some wine and lots of coolers for me.  After a drink or two, I dressed and we went downstairs for a most romantic, absolutely delicious dinner with a bottle of wine.  After dinner we tried to go for a walk but I was unable to go very far.  I was dragging my right leg behind me as though it didn't belong to my body.  We went back to our room that had no TV for entertainment so we had a few more drinks so I could swallow the pain and went to bed.  It was an incredible night and not incredible in the way we had planned.  I had both feet under my husbands back trying to keep them straight as they were in a steady cramp.  My Achilles tendon felt like it had been cut.  My big toe was being stabbed.  I was drinking coolers and downing Advil's all night long.  I cried.  I knew this was no flu.  I was in agony but tell me how do you relay the amount of pain you are in to someone else.  What is the scale?  What can you compare it to for someone else to acknowledge.  I looked fine, I had no fever, I hadn't fallen anywhere.  In the morning I cried again as he opened the curtains to bright beautiful sunshine and was going to leave me to go skiing alone.  What was I going to do?  Read all day in bed?  I finally convinced him to take me.  I had a very hot shower trying to alleviate the aches and pains as much as possible.  We finally managed to get me dressed and downstairs for breakfast much later than expected, just as they were finishing serving I think.  Then we drove to Mount Sutton.  It took the two of us to shove my feet into the ski boots, they were still so badly cramped.  At least the boots forced them straight and I found I could actually move better with skis on than trying to walk.  All I had to do was slide each leg forward.  So...I managed to stand in line at the lift and make it to the top of the first run.  I thought it best to try a green run first to see if it was manageable.  Well, it was icy and I found I had absolutely no control over my leg muscles at all.  I was all over the place, just managing to miss trees and anyone below.  I made it down the hill and that was it.  I was done.  Once.  One run.  Finished.  Luckily it was a nice day and I had brought a book to read.  John helped me up the stairs to the ski chalet and there I stayed.  He skied and I sat outside and read.  I couldn't even make it to the bar for a drink.  I sat at a picnic table in the sun and leaned against a wall.  I shifted weight from one hip to the next, took my boots off, put them back on.  I sat there for what seemed like hours, but it was really only until lunch that I saw his head poke through the crowd and rescue me.  John drove me back to the B&B, made sure I had some food, lots of coolers to drink and left for what was the remainder of the afternoon to do a little more skiing.  I lay on the bed reading, popping Advil, eating and drinking coolers waiting for his return.  All I wanted was to go home.  After a beautiful afternoon and as many runs as he could squeeze in a short few hours, John returned to take me out for dinner.  He scouted out a restaurant close by and we walked, if you can call it that, to dinner.  It was again the best food, great wine and wonderful company, but I was hurting badly.  We went back to the room and I proceeded to have another night just the same as the last.  We got up the next morning, he packed up the car and we left.  He had prepaid our B&B and skiing for 4  or 5 days.  We had both booked the week off work, it was only Monday.  This was now March 15th.  Again I faced the torturous drive home and we made it back to Richmond Hill just before 5:00pm, just before the Rheumatologists office closed.  I thought he should just take me directly to Toronto General, but I think he still thought it was just the flu.  Why not, what else gives you aches in your bones, and so suddenly???

The Family Doctor and my Hands

For two years prior to my skiing episode I had been complaining of sore hands.  I had been involved in Tai Kwon Do, had achieved my blue stripe and was going to try out for my blue belt.  My hands began to bother me.  I found I could no longer punch at the targets.  They ached at night and in the mornings.  They ached at work.  Being an accountant and keying either at a computer or a calculator constantly, my hands were essential to my job.  Some days I would tape them up.  Other days they were fine.  I found I could no longer play golf.  I couldn't hold on to the club.  It felt like my middle finger would dislocate when I tried to swing the club.  John loves to golf and I hated to not participate in this part of his life.  I gave up Tai Kwon Do and concentrated on aerobic classes at our local fitness centre near the office.  This I did at lunch time a couple of times a week.  I went to our family doctor to find out what was wrong with my hands.  He didn't know.  He did some blood tests, everything was fine.  They began to keep me awake at nights, they throbbed with pain.  I did some research on the Internet and came to the conclusion it must be arthritis.  I bought some infra ray gloves that I wore to bed at night hoping for some relief.  I rubbed arthritic cream on them, nothing helped.  I bought a therma bath to dip my hands in wax.  I found that gave me instant relief only while the wax remained hot, about 20 minutes if I wrapped them in plastic and put them in oven mitts.  I finally went back to the family doctor and asked him to make an appointment for me to see a Rheumatologist.  My family doctor did so against his better judgement, after all, nothing was wrong with me.  It hurt to turn a key, I melted if someone shook my hand, cried if I accidentally banged or dropped anything on my hands.  I had to keep them warm or they ached.   I gave up my piano lessons.  I loved playing the piano.  Thinking the movement and stretching of my fingers would help, found it made them worse.  I waited 3 or 4 months but I finally saw a Rheumatologist.

The Rheumatologist

Gee, this was a bust, but what did I expect?  At least I knew the receptionist.  She used to give myself and my youngest daughter allergy shots years ago and still remembered me.  Good thing too, I would make use of my connection with her later.  The Rheumatologist examined my hands and said they showed no sign of Rheumatoid Arthritis, maybe Osteoarthritis, but nothing major.  He did however give me a six month follow up appointment and scheduled me for XRays just to ensure he wasn't missing anything.  This appointment with him just happened to be in late February 2009, just prior to my skiing episode.  I left his office feeling like a cry baby, somebody with a low pain threshold, a born complainer.
Well, March 16th on our way back from Sutton, Quebec after a 7.5 hour drive, we arrived on his office doorstep just before closing at 5:00 unannounced, no appointment scheduled before making it home.  We decided on this route rather than taking me to the hospital where waiting times lasted hours.  My husband had to practically carry me in from the car.  The receptionist took one look at me and scheduled me in for the following day as she had a last minute cancellation.  This time upon seeing me he seemed to take more of an interest and examined me more closely under the watchful and scrutinizing glare of my husband.  He seemed baffled.  He ordered some blood tests and set up a follow-up appointment in two weeks.  He thought it must be some kind of virus and would probably go away after it had run its course, maybe a couple of weeks, possibly six at most.  I left there in shock to think I would have to endure this agony for a possible two more weeks or even longer.  How??  I was strong, athletic, always managed to bounce back from anything.  I had survived nine surgeries in my lifetime, never down for long, always back at work within a few days regardless of the severity.  How would we get through this?  He arranged for the follow up appointment and asked that my husband not attend.  Okay, just how did he expect me to get there?  My husband was the collected one, I on the other hand, being in pain, totally confused, had a difficult time trying to explain the outcome of my appointments to my family or anyone else without his help.  Why did he not want him there?  He asked the questions while I just sat there in awe that no one knew what was happening to me.

Survival

Well, I still had the remainder of the week booked off as vacation anyway, so I was determined I would get through this just like my other medical challenges.  How long could it last, really.  I was strong, athletic and tough.  I was pretty much confined to the couch or the bedroom for the week.  I lay there and watched movies being too uncomfortable to focus on reading for any length of time.  I took some Tylenol 3's I found remaining in the cupboard from a previous surgery.  I took Advil.  I drank Scotch, Vodka, I drank wine.  I drank them along with the drugs.  My husband found a foot bath and set it up in the family room for me to use.  I had my feet in it constantly trying to stop the cramping.  When it was time for bed he used duct tape and taped my feet to some small 2 x 4's he found in the garage, he taped my hands to DVD covers to help ease the cramping.  This is how I was going to get through the two weeks ahead.  Drugs, booze, paraffin wax treatments, foot baths, the jacuzzi, duct tape and the love and devotion of my husband.  Unfortunately, the phone rang.  It was John's eldest daughter informing him that the youngest was at the school office, apparently afraid she had broken her ankle.  You see, John and I were only recently married.  August 2008 in fact was the date.  We still owned two houses.  One in Oakville, where he and his daughters lived, along with myself for the last few months.  I still had my house in Richmond Hill, fully furnished, just as I left it a few months ago.  John's youngest daughter was finishing her final year at high school in Oakville and his oldest was at Wilfred Laurier University in Waterloo.  My oldest daughter was living downtown and my youngest was attending Nippissing University in North Bay.  John worked in Mississauga, 25 minutes from their house in Oakville.  I still worked in Concord, 10 minutes from my house in Richmond Hill, 45 minutes to an hour to 1.5 hours from Oakville depending on the day.  Now, I was in Richmond Hill where I was most comfortable, his daughters Oakville.  So, after the panic phone call, he left and met them at the emergency room in Mississauga.  Sure enough Johanna's ankle was broken.  Here was John, now looking after Jo in Oakville and me in Richmond Hill.  I couldn't even cook for myself.  So he drove.  He stayed in Oakville, worked in Mississauga and drove to Richmond Hill at night to make sure I was fed, surviving and drove back to Oakville.  The strange thing was, I wasn't getting any better.  I just learned the best way to cope and survive.  Scared, for sure.  I called in sick for the second week.  It was March, our company's year end was March 31st.  I was the accountant, controller, the one and only they had.  At least being overly organized, everything at the office was ready for my return.  I wasn't going to be too far behind by missing a couple of weeks, but only a couple of weeks, no longer.  Okay, I made it through the two weeks, but I was no better, I still couldn't walk.  I went back to see the Rheumatologist, he still thought it was a virus, but ordered a bone scan just to be sure.  Now I had to figure out how I was going to get back to work.  Monday morning, with braces on both legs and the use of a cane, I crawled into the office up two flights of stairs.  There I sat churning out numbers as fast as possible while popping Advil like candy.  I'd work as long as I could stand it and then leave only to return the next day.  John was travelling back and forth from Oakville to Richmond Hill.  He would get me groceries, feed me when he was there and head back to Oakville.  He would try and spend one night a week with me and take me to Oakville for the weekends.  This was our routine.  Jo was going to be in a cast for six weeks at least and then would have physiotherapy following.  My two weeks turned into six and there was still no improvement.  The Rheumatologist said the bone scan was fine, he would refer me to a Physiatrist.  I went back to my family doctor.  He just shrugged his shoulders and said he didn't know.  "Come back in a couple of weeks if your still not better".  I knew then I was going to have to look after myself.  John kept looking on the internet for a cause, a name to put to the symptoms.  Somehow it became so important to give it a name.  If it had a name we could find a treatment.  Everything had the same symptoms.  MS, Rheumatoid Arthritis, Lyme Disease, Diabetes, and many, many others.  We weren't doctors, just hypochondriac internet junkies.  So, I decided to take the matter into my own hands.  I made it through year end at work, not well, no more than a few hours a day, but I did it.  My symptoms were getting worse.  The office staff would wheel me around using my office chair so I could go to the bathroom or sit in the lunch room.  They all took turns getting me ice packs and coffee.  I was helpless on my own but I was surviving.  The weekends in Oakville were taxing, I was trying to keep smiling, laughing, putting on a false face for the girls.  I felt guilty and began to wonder if it was all just in my head. The blood tests showed nothing was wrong.  The bone tests showed some Osteoarthritis, but I was not a wimp.  I knew something was wrong. Prior to this I was very happy, extremely active, devoted to my job and my new family.  In our short time together we had travelled to Antigua, Mexico, Spain, attained our Scuba licenses, taken Tai Kwon Do and Piano lessons together and spent weekends at the cottage in the summer.  We packed up my stuff, all my clothes and moved me back to Richmond Hill.  We would live in two houses until Johanna finished school for the summer or I suddenly, magically, healed.

The Doctor Dance

I decided to take matters into my own hands.  I previously had five knee operations so I thought I would just pay a quick visit to the Orthopedic Surgeon that did the repairs to get his opinion on the matter.  I phoned his office and asked if I could book an appointment at the fracture clinic to see him as I had ruined my knee again.  Just a little white lie.  My knee did hurt but not as much as the rest of me.  His receptionist said it had been over two years since I was there last I would need a referral.  I begged, I pleaded, so she booked me in.  After sitting in the waiting room for a couple of hours even with a scheduled appointment, he spent no more than three minutes with me.  I know how busy they are, but really.  He said it must be Lymes Disease.  No, I said, that had been ruled out.  He was going to order a bone scan.  I said that had already been done.  So, he summized nothing was wrong with me.  I jumped from the table at that remark and yelled, "Look at me.  You know me, how active and athletic I am, now when not at work I'm confined to the couch".  He said "Maybe that is your problem, your knee looks fine."  I explained as fast as possible all my symptoms, the blood tests, etc.  He said then it must be "Mono".  Mono?  "Yes", he said.  It can take three to six months, maybe a year before it settles down.  Just like Federer the tennis champ.   http://www.nytimes.com/2008/03/07/sports/07iht-arena.3.10811374.html  Looking for an answer desperately, this I decided was it.  I went back to my famly doctor and told him what the Orthopedic Surgeon suggested.  He did the blood tests.  It wasn't Mono.  I saw the Physiatrist, he did some elctrodiagnostic testing, an EMG, which can be quite uncomfortable.  He didn't know what was wrong.  He suggest cardio testing, a CT Scan, a Neurologist, etc. and wrote a letter to my family doctor requesting he make the appropriate referrals.  My family doctor didn't.  My family doctor referred me back to the Rheumatologist.  The doctor dance was just beginning.  I was frustrated.  My family doctor wasn't doing anything to help nor did he plan to.  He said trying to schedule an appointment with  Neurologist was just a waste of time, estimating in excess of a year wait time.  By then I would be better he said.  I thought I would pursue the allergy route.  I knew I was allergic to everything.  Maybe that had something to do with it.  I had been tested just a year or two ago and they claimed I was in the clear.  After taking allergy shots for 35 years, the allergist said they were gone.  I still had itchy eyes and throat and my nose ran like a tap, maybe he was wrong.  I picked an allergist out of the phone book and asked for an appointment without a referral.  He tested me and said I had allergies to pretty much everything and immediately started me on biweekly shots.  He said I should start noticing a difference immediately.  A month later, no difference.  My symptoms remained the same.  I saw the Rheumatologist again, he referred me back to the same Physiatrist.  The Physiatrist said it had to be MS or something muscular.  He didn't know and didn't refer me to anyone else, just the family doctor again.  Through all this I was still trying to work.  I tried Chinese acupuncture.  The woman was actually trained in China and spoke very little English.  I thought for sure I would get some relief.  I went 3 days a week for an hour each time.  She started on my shoulders, the needles just bounced out.  She couldn't even get them in, my muscles were so tight.  I started to faint.  She laid me on my back and put them into my abdomen instead.  She could perform the acupuncture there, but it didn't help my symptoms any.  She tried my lower back, I just jumped.  The needles would not penetrate the muscle.  After 4 weeks of this torture, we decided that acupuncture was just not going to work in my case, I would have to try something different.  She said I had better see my family doctor.  I decided to try a Chiropractor.  Big mistake, although he certainly meant well.  I would crawl in his office, lay on the table practically in tears, barely able to lift my head.  The headaches, the foot cramps, the pain all over was excruciating.  It was May 2009 now and the pain was beginning to concentrate more between my shoulders and in my neck.  The Chiropractor took X-Rays.  I had Scoliosis.  I took the X-Rays to my family doctor, he said they were Chiropractic X-Rays and set them aside. Meaningless apparently without a proper report attached.  He said they looked normal to him. Nothing out of the ordinary considering my age.  I asked if I could have a referral for Physiotherapy.  That he agreed to.  Again, I dragged myself out of his office.  I started Physiotherapy.  The Therapist said he had never seen anything like it before.  He had absolutely no idea what would cause all my muscles to be so contracted.  He worked with me three times a week trying to build up my strength and stretch my muscles.  I was getting stronger until he had me try the treadmill.  I would collapse with exhaustion.  Biking tired me.  He discharged me not really knowing what was wrong or how best to treat it.  By this point I could no longer hold my head up at lunch or dinner to eat.  Whoever was around would heat up my lunch or dinner and place it on a box so I didn't have to bend my head.  If my head bent, it would start to bop.  I wore a neck brace to work with a scarf wrapped around it.  I started getting the bops more and more frequently.  It wasn't just my head anymore, but my upper torso would go into these weird spasms, almost siezure like.  Totally frustrated and in great pain after work one day, I drove myself to a walk in clinic in Richmond Hill.  I saw a female doctor, who like everyone else was behind schedule and didn't want to deal with me.  I told her my story as quickly as possible.  She didn't want to do anything but said I should see my family doctor.  I cried.  I actually cried.  I, me, broke down and cried.  She told me it was against the rules she couldn't do anything for me.  I pleaded, I begged and said somebody had to do something because my family doctor was totally ignoring me.  She reluctantly gave in and ordered a CT Scan but said I was to do the follow up, that it didn't come from her.  Now well into August, I venture to the hospital for my long awaited CT Scan.  The technicians had to physically assist me to the scanner and try to get my head and body to stop bobbing long enough to get the pictures.  They decided I needed to be seen in Emergency immediately.  One of them retrieved a wheelchair and took me down to Triage where they proceeded to do their best to speed up the process for me to see a doctor.  The nurses in Triage were convinced I needed to see a Neurologist.  I called my husband and he met me there.  We were both excited I was finally going to get somewhere.  Seven hours later I saw the doctor on call, not an Neurologist at all.  He gave me luckily enough, but only 4, Clonazepam and told me to call my family doctor the following day as the results of the CT Scan were normal.  We got home between 1:00 and 2:00 in the morning.  My husband totally fed up with all the doctors and all my pain and misguided efforts decided to hire a private doctor.  Our benefit administrator had mentioned earlier to me the name of someone in Toronto, but is was costly.  By this point we didn't care what the cost was.  Somebody had to do something.

An Answer At Last

We called a private medical services office here in Toronto and asked if they were taking any new patients.  Just in the process of getting their practice up and running, were happy to see me the following day.  No wait.  It was a Thursday morning in September 2009 now, my husband and I arrived on my new doctor's doorstep.  He met with us and discussed my case for as long we wanted.  He watched, he listened, he asked questions.  By now, I was stuttering, my voice was slurred, my head and upper body were bobbing, I was dragging my right leg.  He gave me a prescription on a trial basis to see if it had any effect.  He set up a date for a formal checkup the following week, but was going to go ahead and order an MRI as soon as possible.  We left breathing a sigh of relief, someone finally cared.  I received an email first thing on Monday morning.  He had spent the better part of his weekend researching my case. "I think this is what you might possibly be facing".  It was a link to Cervical Dystonia.  I read it, but decided he was wrong.  This was not acceptable.  I emailed back that I was sure I just had a pinched nerve in my neck.  There must be a slipped disc or some easy fix.  Just take a pill or another surgery and it would all be over.  That Wednesday, I received a phone call.  There had been a cancellation, if possible could I make an MRI appointment within the hour?  No problem, I was ready.  I was not ready for the results.  They were normal.  There was nothing physically wrong with my neck that would cause all my current symptoms.  My Doctor was also referring me to a Neurologist, two in fact.  Because of my initial reaction, he would also refer me to an Orthopedic Surgeon to look at my neck and MRI results to see if anything had been missed.  He also referred me to Dr. Ko, Integrative Medicine in Markham to get his opinion.  My first appointment was with Dr. Ko.  He examined my neck and said it was three fingers out of line with my shoulders.  He agreed with the Cervical Dystonia diagnosis and suggested an integrative approach.  He would do Botox injections in the muscles surrounding my neck but also wanted me to see a Naturopath out of the same office and recommended a Physiotherapist close to my home.  As I had pending appointments with Neurologists as well, he decided to hold off on the Botox until they had a chance to see me first.  The first Neurologist specialized in both Dystonia and Parkinsons.  He spent almost an hour examining me and talking with both my husband and I.  He said my symptoms were not typical of Dystonia and did not believe it to be a proper diagnosis.  My head bobs forward and back, up and down instead of locking to one side.  He said I definitely did not show signs of Parkinson's either.  We left his office wondering what next.  I called my new Doctor and he said to wait until I saw the other Neurologist, he was still certain of his diagnosis.  I didn't have to wait long, within three months I had managed to get in to see two Neurologists, Dr. Ko, have an MRI and unfortunately another EMG.  Neurologist number two examined me, watched me walk, did an EMG and suggested maybe it might be Parkinsons, however he was going to refer me to the Movement Disorders Clinic at the Toronto Western Hospital for their opinion.  This he told me as I was being zapped with electricity up and down my limbs during the EMG.  I couldn't concentrate on what he was saying.  How can you think, respond, ask questions while bolts of electricity are being surged through your body by a technician at the same time he is administering your life sentence.  Again, he said, my symptoms weren't typical of Cervical Dystonia.  My husband and I got in the car to drive home from the hospital and I finally broke down and cried again.  My Grandmother had been diagnosed with Parkinson's when she was 55 year of age and died when I was eight years old.  I couldn't imagine it could happen to me.  You know, the typical selfish "Why Me?".  I called my Doctor from the car and he said he would see me immediately before we drove any further.  We went into his office and I explained the whole Neurologist appointment, treatment, diagnosis and fear.  He said he was still convinced it was Dystonia, not Parkinsons, not a slipped disc in my neck or anything else.  He said he would push to move up my appointment with the Movement Disorders Clinic immediately.

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.

Too Big to Fail?

Lucky me.  I picked accounting as a career and the world was in the midst of total financial chaos.  I worked for a small family owned business with about 240 employees.  There was a billing department, I had someone to do payroll and HR, another for Accounts Payable and one person for Accounts Receivable.  No one else had any accounting experience, none.  I assisted the owner with everything from financing equipment, mortgages on warehouses, budget administration, banking relationships and reporting to preparing journal entries and doing bank reconciliations.  I had worked there for almost 20 years.  This was the absolute worse time for me to be ill.  The banks were on top of everybody.  They wanted constant reporting, budget revisions, ratio analysis, our financial statements as soon as they were complete and projections for the next month.  I couldn't work a full day as it was.  My husband came in to help me out when possible, but I knew they had to do something yesterday.  Our financial year end was March 31st.  I would stay to finish off year end as much as I could, but they would have to call in some troops to assist.  At this point I finally announced that I could no longer keep up and was going to have to take a leave in order to get better.  I gave my notice that my final day of work would be April 27, 2010 and I would have to be placed on disability full time.  Ugh!  I had been doing accounting since I was 17, actually even before that.  I started as a file clerk at 14, did payroll at the age of 16 for the same company I was life guarding for.  I started full time at the age of 17 while pursuing my Certified General Accountant designation.  33 full years of sitting at my desk, leaning over paperwork, using a calculator and a computer.  Hmmmm.  Focal Dystonia???  Only, it would involve not only my hands but my back, legs and buttocks from sitting for hours on end.  Oh yeah, my neck as well from being bent over the desk and looking down at the computer screen or paperwork.  It was time for me to leave and use all my efforts and total concentration on getting better.

My New Routine, No More Work?

At home now on Long Term Disability.  Wow, me at the age of 51, used to a specific daily routine of getting up, going to work, coming home, cooking dinner and looking forward to a night in or evening out.  Even though my routine had been dimishing over the last year it was still difficult to comprehend.  No work tomorrow.  My job now was to get myself better and that I was determined to do, somehow.  At first, my days were filled with juggling appointments.  I had to get a blackberry to keep track of everything.  I would wake between 9:30 and 10:00 in the morning, drag myself to the shower so I could thaw out my body.  Brush my teeth, put makeup on, and then head for breakfast.  By that time it was close to noon and I would drive down to my Physiotherapy appointment.  After that, I would head home, lay on the couch and nap until dinner.  I had no way of getting groceries and most of the time did not have the energy to cook dinner anyway.  My husband would come home from work and I would be asleep on the couch.  He would cook dinner and place it on a box so I could eat.  By this time, the girls were returning from University so we had a house full.  The oldest of John's daughters was just finishing up at Teacher's college and was planning on spending her summer in Swizterland teaching day camp there.  She was also in the process of trying to get at job for the fall supply teaching in England.  The youngest was returning from her first year at Queen's to work at Canada's Wonderland for the summer.  Our house was a revolving door with everyone coming and going.  I was set on my routine and just watched everyone bustle around me.  Tuesday's I went to Yoga.  I left just before noon and returned about 2:00.  It was wonderful, but quite difficult at first.  I went to the reduced heat class and lay there on my mat for about 15 minutes before class started.  The warm air on my muscles was extremely helpful and after my onslaught my flexibility was next to nil.  I would go home after and as usual have my afternoon nap.  Wednesday's I would go to Osteopathy.  I found much relief during my hour here, having her work on whatever was main issue that week.  It could be headaches, my neck, back, feet, anything and she could always make me feel better.  Most of the time she would work on my head and neck, sending me home exhausted and ready for a nap.  Thursday's was Yoga again, and Friday was Massage Therapy.  That was painful, not relaxing at all.  They use their elbows to stretch out the muscles.  At first I started with an hour, but found it insufficient and ended up increasing my appointments to 1.5 hours long.  I would come home and end up in the bath with Epson Salts trying to heal my wounds.  It usually took a couple of days to recover.  In between I would see my family doctor, the Naturopath and Dr. Chen.  Dr. Chen administered Botox injections quarterly and the Naturopath tried various natural remedies.  I had suffered from Irritable Bowel Syndrom since my early twenties.  The Naturopath, Dr. Arseneau, mixed up a tincture and after several months it actually worked.  I had been to numerous Gastroenterologists over the last 25 years with the same complaint of bloating and severe abdominal pain.  The tincture actually cured it.  He was and still is determined to cure all of my ailments and seems to be accomplishing just that, one at a time.

The Dystonia Starts to Spread

By June 2010, the Dystonia started to spread.  It was no longer contained in just my neck but was also affecting my digestive system.  In fact it completely came to a halt.  Totally disgusting.  I went to two different gastroenterologists for their advise and assistance.  I had to undergo another colonoscopy.  This was my fifth.  I had the hiccups severely as well and still do on occasion.  By severe, I mean we lost count at 125 in one day.  They become exhausting at that point.  I tried many forms of medications, laxatives and underwent colonic treatments weekly.  That became my Wednesday afternoon ritual.  As a treat, I would sit in an infra red sauna for 45 minutes after just to relax and detox.  It took about 9 months to get my guts in order again but I still have to take gunk on a daily basis to ensure they keep working.  Still when the Dystonia symptoms start to flare, I start hiccuping, loudly and violently.  I eat yeast free bread, lots of grains in my cereal for breakfast with hemp milk, no cheeses, peppers, onions, or garlic.  I have introduced tomatoes back into my diet, limited amounts of red meat, rice or corn pasta only, lactose free milk in my coffee, gluten free crackers and absolutely no processed or fast foods.  I try to eat only brown of anything (rice, eggs, etc.)  No flour, pastries or junk foods.  Nothing that comes from a box other than organic cereals.  Lots of fruit whether it be fresh or frozen, no preservatives.  I drink pure Cranberry Juice, water, Gatorade, coffee and indulge in red wine.  If I stick to this diet, I have no problems.

Art and Healing from Within

Off work now and in between the various appointments, I decided to start drawing and painting again.  In the early fall of 2010 my husband and I drove around Richmond Hill following an art tour.  We visited the homes of a few artists and also the Mill Pond Art Gallery.  I spoke to one local artist, Valerie Kent, and decided to take some private classes from her at my home.  I was self conscious about wearing a neck brace to paint and was just more comfortable in my own home so every Monday evening she would bring all her art supplies and we would paint in the kitchen and share a few laughs.  I found it very therapeutic, and she taught me everything she could in a couple of hours a week.  I loved it and wanted to know more.  I decided to put a portfolio together and apply at York University and OCADU for the fall 2011 on a part time basis, no more than 2 classes per week.  I received an acceptance from both by the end of February.  Wow, was I excited.  It was something I could do either standing, sitting, walking around, and on my own timetable.  I only worked at it when I was feeling up to it.  There were no pressures, no deadlines.  I could put on some music and just feel free to express myself however I wanted.  It was something I could actually do, even with Dystonia.  To test my capabilities of being able to withstand going to a classroom situation, I decided to take a class from Stephen Yau, another artist from Richmond Hill.  This time I went to his home on Thursday mornings and am still participating in watercolour classes at this time.  I can manage 2 or 3 hours without too much discomfort and have only missed a few classes so far.  The trial for me will be the drive back and forth from OCAD downtown to Richmond Hill.  I will see how I manage, knowing my daughter lives just down the street gives me some comfort as well.

BIOPUNCTURE

Well, I have decided to skip a few steps and stories and get right down to the newest treatment that seems to be helping me.  I started something new called Biopuncture in May 2011.  I have been reluctant to say much to anyone on the subject until I was satisfied this was actually working for me.  I went for a follow up to Dr. Arseneau as I had lost my voice for three weeks.  He was and is determined to get to the cause of the Dystonia and suggested I try Biopuncture.   It is now August  2011 and the results are still stable.  It is an uncomfortable and lengthy process and I'm not sure at this point how long it will last, be it seems to be working for me.  I went to my Naturopath, Dr. Arseneau, in Markham for the procedure.  He has gone to Germany to study Biopuncture and has found it successful on other Dystonia patients.  I have had about eight sessions now and have another booked for this week.  I see my Osteopath the day before and she maps out for him approximately 5 muscle groups that are contracted and 10 injection spots in those groups that are most in need.  I see him the following day and he performs the biopuncture with the help of his assistant.  It is an uncomfortable procedure, like botox, but it seems to be lasting longer.  I had injections in my neck and shoulders on several occasions in May and June and I now have full range of motion in my neck.  Prior to this I could not turn my neck to either side making driving not only difficult but dangerous.  For my neck and upper back I went weekly for the injections.  It was painful and exhausting.  By the fourth week, I was so tired I could not even sit in the chair in his office, I was just laying there waiting.  My husband had to take me and bring me home after.  Dr. Arseneau adjusted the recipe of the injections and the following week I had more energy that I could handle.  We took a break for a month to see how effective the results were.  I was astonished.  My neck was still mobile.  The massage therapist noticed a major improvement in the muscle tone and movement.  I decided to go back and start working on the bottom half of my body.  So far, we are concentrating on the right side as that is the leg I drag after I have been sitting for any length of time.  I do notice a difference, an improvement for sure, but there is still a long way to go.  These sessions have been the worst and most painful.  I have been taking an ice pack with me to sit on in the car on the way home.  The first set took me two weeks to get back to normal.  I have been two more times since on a biweekly basis instead of weekly.  It is getting easier, faster and less painful.  This last time I was fine by the next day.  The injections have been all up my right leg, buttocks and lower right side of my back.  When we finish with the right side, we will start on the left.  He says some patients only need 2 or 3 sessions but one patient had 21 sessions.  I think I will be closer to the latter by the time he is finished with me.  But if it works???  Wow.  Anything is worth relief.  I will keep my blog updated as to the results.

Knee Surgery for the 6th time

Well the Biopuncture worked for a while, but after undergoing knee surgery after attending my first class at OCADU the great results slowly started to diminish.  Only being allowed to miss 3 classes at school meant I was off for just over a week as my drawing class was both on Monday's and Wednesday's.  Being admittedly not quite so young anymore and after 6 operations now on the same knee, recuperation time was a little longer than expected.  I had tried to have the operations scheduled for August, but you know how it is.  The receptionist for the orthopedic surgeon was on holidays during my appointment with him and her replacement misplaced my file and I was forgotten.  After a few reminders, they found me again and booked me in as soon as possible, just after my first class.  So I struggled.  I tried to keep up with the class and the endless amounts of homework with a brace on my knee and eventually on my neck too.  I guess between driving downtown on the Don Valley Parkway (Parking Lot as I call it) to class, dragging myself around, being bent over a table doing art and going to Physiotherapy 3 times a week for my knee and Osteopathy for my neck was too much for the Biopuncture.  After 6 weeks of physio, I went back to ballet hoping to get some relief from that.  But being the overachiever that I am, I took on a huge art project due by the first week of December and I signed up for dancing in the Nutcracker.  By the beginning of November, I was begging for Botox.  As usual however, even that got messed up.  My doctor's office forgot to call the hospital to make the appointment.  By the time I found out and called myself, they were into Christmas vacations and I was unable to get in until mid January.  That meant I was going to have to persevere through the Nutcracker and worse, Christmas.  Ugh!!!

The Nutcracker, Xmas Grinch and the Other Knee

http://click.icptrack.com/icp/relay.php?r=50033156&msgid=1088458&act=BOIU&c=295069&destination=http%3A%2F%2Fwww.youtube.com%2Fwatch%3Fv%3DKFNnVd_S9u0%26context%3DC383ad2bADOEgsToPDskJZydYCSnlr5TEOgy6tIGF9

Here I am, in the Nutcracker.  I'm one of the villagers in a hot pink dress with white curls, just part of the background scenery, but I made it.  It was a beautiful performance by all the dancers involved, the costumes amazing, the colours, music and dance breathtaking.  By the end of the 4th performance I could barely walk never mind dance, BUT I DID IT!!!  I had braces on both knees by then as the stress put on my right leg tore my meniscus there too.  What a mess.  Upon follow-up with the surgeon on my left knee, he wanted to repair my right one as well.  I suggested that I try working on it myself with weights and physio before undergoing all that recovery time again.  The majority of my Christmas shopping was done by Internet and my husband took me out on a couple of Saturday evening trips in a wheelchair.  The malls are pretty quiet Saturday nights and I was less likely to get run over in the chaos.  Even with 4 daughters to buy for and being unable to walk the malls, it was not too bad.  Instead of wrapping, everything goes in bags.  I cannot sit with my head bent over to wrap so we have a tree full of Xmas bags and tissue paper.  The difficult part for me is the entertaining.  All the dinners, Xmas Eve, Xmas morning, Xmas dinner, Boxing day dinner, just family stuff.  Driving here, driving there.  I haven't figured out what causes all the difficulty.  Is it the sitting, or moving your head to look at everyone?  My husband does the majority of the cooking, but there is still the preparation and the clean up following.  Christmas is just painful.  I feel like the Grinch by the time New Years Eve rolls around and don't want to go anywhere or celebrate at all.  I just want to crawl into a corner by then and hide.  Do the rest of you Dystonia sufferers out there feel like me or am I the new Grinch wanna be????

The Spasmodic Torticollis Recovery Clinic

In January 2012, one of other members of the Toronto Dystonia Chapter mentioned a clinic in Santa Fe that dealt exclusively with Cervical Dystonia suffers.  Willing to try anything, my husband and I booked our flights and off we went.  The clinic is run by Abigail Brown who herself developed Dystonia at the age of 19.  Abbi spent 4 days with me and only me going through her intense and very knowledgeable program. She thoroughly explained what Cervical Dystonia was and how we can combat the symptoms through attitude, physical exercise, massage therapy, and use of a variety of tools.  Abbi supplied me with a manual to take home with me for future reference.  She went over Trigger Point work and supplied me with a Bodo to press on my specific knots; she taught me how to use weights to lengthen my neck muscles; gave me a list of suppliers for helpful gadgets such as magnets and massagers.  She had me meet with a Nutritionist and a Massage Therapist and provided me with a membership to ST/Dystonia, Inc.  I went to her clinic for 4 days, while my husband skied in Santa Fe and Taos.  It was a great vacation for both of us and I came back knowing far more about Dystonia and how to lessen its symptoms.  You can contact her through STRC http://www.STclinic.com or stclinic@comcast.net. 

Its a New Year 2012

I was determined to get myself on a new path for recovery after returning from Santa Fe and Abigail's clinic.  The first week back I went to the gym, ballet and then got sick, really sick.  I was hot, cold, nauseous and very itchy.  Finally I discovered a few spots under my right arm.  Too late.  I should have gone to the doctor immediately.  I had come down with the shingles.  A few days later came the pain.  Ugh!  On top of Dystonia, getting caught up at school from my week off, and now the Shingles.  What else.  As usual I persevered but my Dystonia symptoms were worse because of it.  The Naturopath gave me some injections to help with the pain.  The botoxt shots I had in January wore off much earlier and everything became even more difficult to accomplish than normal. School finished for the summer on April 10 and on Friday, April 13, I had my next set of Botox injections.  I didn't even give Biopuncture a second thought.  The Botox involves one session and the results start to take effect after one week.  The Shingles are finally gone and I am off to a new start again.