A look at technology to help us patients finds that this is a small field so far.
TECHNOLOGY TO DIAGNOSE THE CONDITION
Big advances in understanding dystonia have come using new technology.
Lab tests to find brain chemical changes, genetic tests to see genetic links, brain scans to see changes in electrical transmission have given clear evidence that dystonia is a real thing. The recent discovery that some forms of dystonia can be seen on MRIs is heartening. (see history page of this website
TECHNOLOGY TO HELP US WITH DAILY ACTIVITIES
Anecdotally it is clear that patients are finding relief with little helps. This website does not endorse any product or services. However these are some general categories of items people seem to be trying.
- eg. for still playing the music they love – splints on fingers, new embouchure, objects on the strings or pedals or buttons
- eg. for sitting with comfort – high back chair, cushions, foot rest
- eg. for walking and getting around with comfort – eg, cane, walking stick, walker, wheelchair
- eg. for eating and its challenges – eg food processor, blender
- eg. for using a computer with ease – wrist rest, computer monitor stand adjustment
- eg. for speaking with ease – cordless phone, speaker phone, portable microphone
- eg, for going greater distances – bicycle, recliner bicycle,
TECHNOLOGY TO MAKE US MORE COMFORTABLE
- eg. clothing adjustments – eg. halter bra, pressure socks, scarves, eating smock or bib
- eg. aids to physiotherapy — foam rolls, exercise balls, rubber bands for stretch exercises
- eg. aids to sleeping – eg. special pillows, heating pads, weighted blankets
TECHNOLOGY TO HELP US KNOW THE DAILY STATUS OF OUR DYSTONIA
A key area that does seem to need research is technology to help us measure our condition in our own homes.
- People with diabetes can test their blood sugar with a blood sugar meter.
- People with a heart condition can take their pulse, or blood pressure.
- People with lung challenges can use a peak flow meter to measure their breathing efficiency
Those of us with dystonia however have very little to measure “how you are today?” in any concrete way. We can look in the mirror to see our tilt or hear our own voices to see our speech. We can sense the difference in muscle tightness or pain but we have no way to calibrate these or even precise words to describe them.
Not having a way to measure can be frustrating. Having a number or scale would help in these areas:
- to validate how we feel the dystonia is today. It would confirm the way the condition varies
- to know if the condition is changing, if it is moving to a new location, getting worse, getting better.
- to know the effect of any measures we are trying to help us. Is this exercise really helping? Is the hot bath helping?
- to know the effect of any sensory tricks we discovered
- to know the effect of treatments we are being given. Did the injection help? How much has the surgery changed things?
- to retain data over a period of time so we could show a doctor the longer term shifts, and enable researchers to notice patterns
Here are some of the aspects of dytonia it might be very useful to measure:
- where it hurts
- where to do an injection most efficiently
- how much it hurts- level of pain
- the rhythm of vibrations we feel
- the intensity of the spasms, jerks, twitches or tremor
- the degree of head tilt, body tilt
- the amount of finger bend, toe curl
- our posture, stance, what we do to stay balanced
Pressure we are under
- the force that seems to be pushing us into a position
- the strength we use to resist that pressure
- how hard the dystonia is making our heads tilt or sink or rise
- pressure we endure of the twist of our arm, wrist, leg, foot
Range of motion
- how well we can move our neck, tongue, arm, finger
- how well we can lift, move, shrug our shoulders
- our balance as we walk, our wobble, wider foot placement
- our tilt, angle of body as we try to move forward
- our rhythm of walking, control of each foot
- our foot and leg positions as we try to move
- any delay in our desire to walk and the movement itself
- our eye control as we turn our heads
- our eye response to light
- our ability to track the movement of an object
- our blink rate
- the way the voice varies in pitch, volume, breathiness, rhythm
- the effect of situations on the voice
- the effect of treatments on the voice like a sip of wine
- our startle reflex
- the volume, location and frequency of click sounds in muscles when we move
- our grip strength
- strength of muscles of hand or foot to push against objects
- ability to hold a cup, a coin, a pen
- ability to push a button, turn a key, open a jar
There seems to be no at home technology that would help us measure the factors above. However – there may be a few items from other fields that might be useful.
CURRENT TECHNOLOGIES THAT MAY SHOW PROMISE
- app on a smartphone – .Dr. Pieter Kubbwen has created a mobile app that samples acceleration, rotation, rotation speed, and gravity. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5296883/
- There is a device for orthostatic tremor measurement 2017 – Dr. Danish Bhatti.
b. to help with injections
Manchester Metropolitan University is using ultrasound software to identify dystonic muscles for botulinum toxin injections. With the software a clinician with a laptop can place an ultrasound probe on the neck and see real time images of muscles up to five layers deep. Each muscle is identified by a different color. Active muscle tremor can be seen in some people with cervical dystonia. So far a few of the muscles involved had previously not been identified or targeted for botulinum toxin injections.
c. to help us measure our sleep depth, restlessness
- an app that tells by our breathing rate how deeply we were sleeping- app technologies for athletes already may do this
d. to help us measure our gait
- there is technology to help athletes assess their gait
- in shoe technology
- a wired mat to walk on that senses the gait
- computer animation for gait, robotics
- gait analysis for athletes-to see arch height, weight distribution
- as in wet footprint test, photo of back of lower leg and foot angle
e. to measure our speed, pauses etc
- apps for marathon runners
f. a tablet to measure hand dystonia
- computerized analysis of tremor and ability to do spiral drawing and arm function
g. to measure our voice quality
- recording devices
h. to speak for you in a crowded room or drive through by prerecording what you want to say- eg. ordering food
i. to put together previous voice recordings of the person so they can still speak
- text to speech application using archived audio
j. to synthesize a voice, voice generator
- type a text and the device says it out loud
k. translator on cell phone app
- type a text in one language and it says it in another language out loud
It seems to me that we patients could really use a few inexpensive in-home tech devices. This may be an opportunity for engineers, software designers or just creative inventive types.