It seems an appropriate time to introduce another side of my life, besides the out there side.
One day while in the grocery store, I met up with an acquaintance and neighbour of mine. After a bit of conversation he asked me what was wrong with my neck. What he was seeing were some unusual positions of my neck, which, perhaps unknown to my neighbor, were being caused by abnormal contraction of some of the neck muscles. I said I had some misbehaving muscles. This condition, in my case is called “dystonia”. In other words, it means dysfunctional muscles or lack of normal muscle tone.
Dystonia is a relatively rare condition characterized by unusual movements, posturing, and muscle strain and tension, prolonged contraction. It can be quite painful and also very distracting. Many physicians have never seen a case or observed it in medical school. It is difficult to find a doctor who has sufficient knowledge and experience to make an accurate identification.
What causes dystonia is not really known or understood, hence the term “idiopathic”. Research indicates the muscle dystonia is rooted in a genetic chromosome malfunction. There is no cure for it. Presently there are treatments and drugs that may lessen the spasmodic muscle contractions for a short time. Some of the drugs tried were baclofen, Ativan, Artane and tetrabenazine. In the case of one, the side effects were worse than the dystonia. Most provided hardly detectable relief. One produced suicidal conditions and the relief that Ativan provided wore off in a few weeks. It can be extremely addictive! I didn’t find any of them worth my time or interest.
Dystonia affects the voluntary muscle system, so when a person relaxes or goes to sleep the spasms, may largely subside or totally stop. The areas affected give rise to the names given to the various types of dystonia. For example, there is torso, cervical and mandibular dystonia. There are others. A blend of cervical, mandibular and laryngeal dystonia describes my case. Add to that blepharospasm, which is eyelid closure where the muscles controlling the eyelids spasm causing the eyes to partially or totally close for an instant or more, depending on the degree of severity. Now, how did it begin?
One day in the fall of 1993, I noticed that my eyes were sort of itchy and squinting. Some thought I was just tired but I didn’t feel tired at all. From time to time over the next few months, my eyes often felt dry and sometimes felt like a puff of dust or sand had gotten into them. I found, at this stage, that eating fruit juice popsicles gave some relief. That was perhaps good for a mild case of blepharospasm; however, the remedy became ineffective as the condition worsened. After being checked for eye allergies, and being checked by an ophthalmologist and for 13 types of arthritis, in three or so months the condition was diagnosed as blepharospasm.
So I began having Botox treatments. Very small amounts of botulinum toxin were injected into the eyelids. Sometimes the injections felt like bad mosquito stings and other times they weren’t felt at all. This really helped reduce the eyelid spasms and reduced the threat of the eyelids closing completely for even an instant. Involuntary blinking stayed normal and I sensed no side effects from the treatment except, if at all, a bit of temporary soreness. In the first few years of this procedure, once in a while, but rarely, some of the material would seep into the inside corner of the eye and the tear duct would water for a few weeks. With many people, the dystonia stops with blepharospasm, however that does not describe my experience.
In 1996, the dystonia also began to affect the neck muscles. One morning while relaxing, I felt a very slight pulling in the back of the neck. Over the next few months, the pulling increased and spread to other neck muscles. Following a few years later were some voice distortions and articulation difficulties as muscles in the voice box and throat were affected. So now I have an interesting “dialect”. Some people, especially those with some hearing deficit, have a hard time understanding me while others seem to have no problem at all figuring out what I have said. Then there are some, seemingly too embarrassed or polite to say, “Pass that by me again,” who go on acting like they fully understand. I have learned to detect, at times, when someone doesn’t understand me. Actually, I don’t mind at all being asked to repeat things. I understand.
When the condition spread to the other areas of my neck and later a bit to my jaw muscles, I learned the names: cervical, orofacial, buccal (Meige’s syndrome) laryngeal and mandibular dystonia. I was told by one of the few dystonia experts in B.C. that I had a very complex condition. However, while for me the dystonia is somewhat spastic, for others it can be more generally present and constant. I once had an acquaintance whose back was pulled to one side and also, very unfortunately, the arms were moving constantly unless the hands were sat on. For this person it began in the unusually stressful teenage years. This acquaintance of mine from the Okanagan, however, eventually found some relief through some treatment and also got their driver’s licence.
I have found by talking to various people with some form of dystonia that, with many of them, the condition started with some kind of prolonged, severe physical or emotional stress when they were young, and for some, when they were older. The stress seems to have triggered secondary effects from what experts in the field say may be a genetic foul-up. I understand dystonia can also arise from nerve damage and/or inflammation. There seems to be an inherited factor in some dystonias, like focal dystonia (concentrated in one area). Unlike Parkinson’s, they think dystonia expresses itself through the basal ganglion, ending up in sending mixed up neurochemical messages to the muscles.
That’s giving you a sketchy story and the way I see it but, of course, I am not an expert. One way of not curing but of lessening the severity of the problem, I have found for myself, is working with my hands with small detail, such as in drawing, intricate mechanics, typing and some other more general hand activity. Acute concentration seems to be a key here. Chasing after a football wakes up the symptoms big time. Taking Botox treatments (by minute injections) is the answer to alleviating my dystonia. But it is not a cure.
I relate all this, not to just acquaint you with another side of my life, but to provide awareness of this condition. What I have written is only part of the story. There is the rest of the story. An expert told me that over 15,000 people in B.C. have some form of dystonia. Most cases are undiagnosed. Other cases are not severe enough to be cause for concern. But with others, for lack of knowledge, the condition prevails untreated while the individual suffers emotionally, financially and in practical ways.
At any time, as well as at times when a person is afflicted by dystonia or any other ailment, it is extremely important to look after the rest of the body by regularly focusing outward (not inward), exercising, healthy eating (plant-based diet), and by getting fresh air and sunshine in the outdoors.
By learning a bit about dystonia through my experience and later information, a few individuals have been, eventually, diagnosed. Perhaps this glimpse of the other side of my life will, in someway, or through someone, be of benefit.
Ed McMackin is a biologist by profession but a naturalist and hiker by nature. He can be reached at 250-866-5747.