Can you imagine a world where doing something as simple as brushing your teeth
is difficult? A world where washing your dishes is challenging.
A world where that morning cup of coffee is almost elusive. A place where you keep dropping things.
What about typing on a keyboard? What if this was completely insufferable. What if your body
limits you from doing everyday tasks? Your laundry. Cleaning the house. Driving
Eating
Drinking. Celebrating with your friends and family. The list is endless. Unfortunately for some people
this is more than a contemplative exercise more than a thought experiment more than imagination
for some people this is reality. Decoding dystonia for my eyes so why don't all of us live in these
shoes for a few minutes here let's put this on to see dystonia from a different
perspective man there goes my hand cramping again these contractions are really infuriating
not to mention the pain with them i can't even brush my teeth without peace
don't get me wrong i love technology but sometimes
working on my computer all day well this can be really challenging i don't have full control
over the keyboard and just after a while my my hand just starts to hurt and cramp up
even washing my dishes this can be a problem one sudden tremor and i lose complete control
yeah just like that
well this is probably probably the thing that's uh most embarrassing especially around people
i can't always hold on to stuff and i know it's out of my control but i i wish it wasn't
just one tremor and boom it's on the ground
oh my god what's wrong with him why is he shaking
so much i've never seen something like this before what's going on
well that was just a few minutes imagine every day i just wish more people knew about this disorder
if more people knew i'm sure it would make things easier
what is dystonia dystonia is a specific movement disorder that is characterized by either
intermittent or even sustained muscle contractions that induce atypical movements postures or tremors
that are usually repetitive dystonia is a disorder that affects two to 50 cases per
million for early onset dystonia and 30 to 7 320 cases per million for late onset estonia
types of dystonia dystonia can be classified into five main categories the first type
is generalized dystonia this is when the disorder affects most or all of the body the second is hemi
dystonia where the effects are localized to one half of the body such as the right side
next we have multifocal dystonia this affects two or more distant or unrelated body parts
such as a leg and an arm the fourth type is segmental dystonia this involves two
or more adjacent body parts such as an arm and a hand and finally we have focal dystonia here
the effects are localized to one body part as seen in the video before
so what exactly causes dystonia unfortunately many dystonia cases are considered idiopathic
which means the direct cause is unknown because of the complexity of this disorder
dystonia can be inherited genetically and different genetic malformations
can lead to different types of dystonia the most common and widely known is dty-1 dystonia the
vast majority of these cases are caused by a specific mutation within a specific gene
however dystonia can also be acquired through damage to specific areas in the brain by strokes
infection tumors oxygen deprivation poisoning and just general trauma
so what exactly are the signs and symptoms of dystonia although the onset of dystonia
varies from 5 to 38 the most common form usually manifests around 19 years of age
typically dystonia affects the basal ganglia and the cranial area of the brain as well as muscles
throughout the body in the face throat lungs and limbs there are numerous hallmark symptoms of
dystonia including speech difficulties dragging leg hand and foot cramps and uncontrollable
blinking now let's take a look at the two main physical signs that are clinically present in most
dystonia patients first we have dystonic movements this is when the movements result in tremors the
movement is repetitive or patterned and usually sustained the second are dystonic postures
in this various body parts are contracted uncontrollably and there's a general deterioration
in fine motor skills in terms of treatments unfortunately there is no cure for dystonia
however there are many viable treatments that can significantly improve quality of life
the first treatment are botulinum injections in this method the botulinum neurotoxin
is injected into individuals muscles this toxin reduces the excessive muscle contractions and
overall activity seen in dystonia normally these injections are more suited for dystonias that
affect one or two areas of the body transcranial magnetic stimulation is another option
this involves the emission of low frequency magnetic stimulation onto someone's head this
treatment option helps reduce uncontrollable movements this is a relatively new treatment
option and preliminary evidence shows that it can be effective with repeated stimulation next
we have deep brain stimulation this is the most commonly used surgical treatment for
dystonia that results in extreme disabilities this treatment involves the implantation of electrodes
within the patient's brain these electrodes are connected to a stimulator that is also
surgically implanted into the chest the electrodes within the brain transmit impulses that reduce the
intensity of muscle contractions and finally we have physical treatments these are often
used in conjunction with other treatments to improve outcomes these treatment options
include speech and physical therapy motor learning exercises and various muscle relaxing medications
and now you know a little bit about dystonia but learning isn't enough
we all need to play a part in health advocacy even in today's advanced world there are
numerous incurable disorders and diseases these unfortunate conditions only have treatments
in some cases these treatments can be very effective vastly improving the quality of life
however in many other instances these treatments only have limited effects in these situations
it is the duty of society to help improve their lives to help create an enabling environment
a world that accommodates specific needs not just for the average person but for all people