Technology
A. Context
People with diabetes can check their blood glucose level with hand held monitors or lately with devices attached to their skin. Heart patients can check their pulse at home and those with asthma can use peak flow meters to assess their breathing. People with dystonia have no parallel device to report their condition as it changes day to day. This lack has been observed by some patients who have spoken of how useful it would be to have technology to measure their tilt, their pain, their range of motion, the pressure that is being exerted on a muscle, the strength of a muscle. Some would like to have such a technology at the doctor’s office to help assess their condition at regular appointments, to see if treatment is working or the condition is progressing. Others would like to have such a device at home to determine daily shifts and effects of more mundane attempts to cope.
Development of such technology for dystonia may be slow since industry may not be aware of this condition or if aware of it, may feel it is so rare that it would not create a profitable industry. This objection however may be inaccurate. It is possible that such technology would be useful to others with any movement disorder. Some studies estimate that 10% of those with Parkinons’s disease have dystonia symptoms and a similar percentage of those with cerebral palsy have dystonia symptoms Parkinson’s disease affects about 1 million people in the US and 10 million worldwide. Essential tremor affects about 7 million in the US. Cerebral palsy affects about 750,000 in the US Dystonia affects about 250,000 in the US but the same technology may benefit all of them.
B. Some current technology
There are already rating scales to measure pain, muscle strength and gait during a clinical exam. These scales depend on the experience of the examiner and their perception of the response. These subjective judgments such as whether the patient can track an object well with the eyes, release grip on a cup at will, turn to the left or right when asked, whether they could open and close the fist or push against the examiner’s hand with their foot on command, whether their pencil grip was firm, their writing was shaky, are very likely accurate but are subjective.
The Toronto Western Spasmodic Torticollis rating scale is used by a clinician to assess disability and pain. The Cervical Dystonia Impact Profile is used to assess symptoms, effect on daily activities and the psycho-social aspects.
The Hypertonia Assessment tool is used to assess hypertonia in children. It helps identify when dystonia or spasticity or mixed tonal patterns are present.
Some patients wonder if it might be possible to develop a graded scale that was even more precise because it was machine based. In a clinical setting if there were a device to calibrate exact tilt of the body, exact pressure the patient can exert pushing down on an object, exact balance adjustments walking, exact pressure on each foot or gait rhythm, the precision of the measurement may help diagnose current status of the condition and therefore help assess changes in it.
to measure tilt
Angles of tilt are already precisely calculated by airline designers. Engineers are very familiar with the many precise angles an object can be placed at. However patients have not reported any precise way to measure their neck or body tilt.
to measure gait and stride
With the explosion of interest in running and marathons, many devices have been developed to track the speed of a runner, the route taken mapped, the gait studied, the pauses. The intent is to enable runners to improve their performance and see areas of possible improvement. Because these apps study movement very precisely, they could be useful to study dystonic gait/
There is a mobile device helpful to assess the gait, stride, balance, rotation and eye movement of those with Parkinson’s disease.
There is a sensor that can be placed in shoes to give precise analysis of stride, stride length, rhythm.
There is platform based technology of a pressured mobile mat that a person walks on that can measure foot fall of each foot, pressure on heel or toe and other very precise aspects of the gait.
to measure tremor
-There is computerized tablet to measure hand dystonia tremor. The standard clinical test of spiral drawing is extended to a digitizing table to quantify tremor. The sensors can detect, characterize and quantify areas of motor dysfunction.
A smart phone app that measures tremor has been devised that samples acceleration, rotation, rotation speed, and gravity in 3 axes
to measure body movement
A smart phone app has been devised to measure how well a person sleeps by seeing how often they move during the night. This app though designed to study sleep level also is therefore measuring body movement and may be useful to study how those with dystonia move in the night
There are portable sleep test devices that measure brain waves, heart beat and breathing during sleep, that track eye movement and muscle activity in a lab setting. The results in polysomnography form help assess sleep problems such as sleep apnea. They may however also be useful to track some aspects of muscle movement.
to measure voice
Much technology already exists to record voice and even surrounding sounds, and to study it for pitch, volume, hesitations, even accents. Such technology is often used by the police as they listen to evidence from a telephone communication or by psychologists who may study mood and stress level based on voice production. Singers, radio and TV announcers, and instrumental musicians are all very familiar with such technology and the precise ways sounds can be amplified. modified, synthesized. This same technology could be used to study the voice production of those with vocal cord dystonia and the effect of some sensory tricks, the effect of drinking wine, or the anomaly that when yelling a person who can barely speak can often suddenly produce voice that is very strong.
to help with treatment
In some clinics ultrasound software is used to identify dystonia muscles to enable more precise injections of botulinum toxin. With this software a clinician with a laptop can place an ultrasound proble on the neck and see real time images of muscles up to five layers deep. Each muscle can be identified by a different color. The software also can detect active muscle tremor. This technology has been able to identify and target for injections muscles that had not previously been identified as involved in dystonia.
to help with function
There is a special glove with bionic capabilities that has been developed to help people manipulate their fingers more easily
Tape recorders can record voice and those with problems speaking can record their voice and get a good version of it and then use it in interactions with the public or to present speeches, just prerecorded.
Voice synthesizers can create or distort a voice at will and could clarify a hesitant or weaker voice
Smart phone apps permit pre recording of a voice command either by the patient or a friend to order food at a drive through or order flowers over the telephone.
Smart phone apps already can create a voice that will say aloud a message printed in text.
Smart phone translation apps can be used to type a message and have it ‘translated’ and said aloud in any language of the listed options and can enable those with voice problems to still speak clearly
In the US a radio show host with many years of experience got vocal cord dystonia and was unable to speak well. However there were enough tapes of his voice from 250-300 hours of earlier broadcasts that it was possible to use how he spoke before to simulate a voice he could use for messages today. He was able to continue his job by use of this computer assist technology.
C. Comments of researchers
Quantification tool for objective measurement of the extent of musicians’ cramps having a high precision has not been available
Because dystonia is a dynamic disorder that changes in severity based on posture and activity, the development of reliable rating scales to evaluate it is problematic.
Further research is needed to develop a valid and reliable instrument to measure cervical dystonia
D. How to ask
Source of question ideas
-clinical studies, patient reports
E. Question categories
general
research areas
tech suggestions
other
F. Questions asked -survey number, question number
surveys 20A, 20B
G. Results
controversial
20A 23 controvers 25 43 x long
20B 18 controvers 16 47 x long
max no. respondents 23
total questions 90
likely type of dystonia all
percent of all respondents doing survey 23 of 508 or 4.5%
G. Results
(The bracketed item at the end of each question set indicates the survey number and then the question number. eg. 1-3 is survey one, question 3)
1A -tech – pressure, resistance to movement, strength
-a device to be able to rest the side of your head against a pad that measured how hard the dystonia press us that is pushing your head to the side.
68.75% Yes, that sounds potentially useful
25.00% No not likely accurate
6.25% No, not likely affordable (20B-22)
-a device to be able to rest your chin on a pad that measured how strong is the pressure that is forcing your chin down
68.75% Yes that sounds potentially useful
25.00% No not likely useful
6.25% Not likely practical (20B-21)
– a device with a cuff to put your arm in, with sensors to detect how much pressure there is involuntarily turning your arm or wrist.
64.29% Yes that sounds potentially useful
21.43% No, not likely useful
14.29% No, not likely practical (20B-24)
-a device with a cuff to put your leg in with sensors to detect how much pressure there is involuntarily turning your leg or foot
53.33% Yes that sounds potentially useful
46.67$ No, not likely useful (20B-25)
-a pad that you could push against with your hand or leg and that could measure your strength, whether it is equal on both sides and if it is changing over time
80.00% Yes that sounds potentially useful
13.33% No, not likely useful
6.67% Not likely practical (20B-26)
1B – tech – range of motion
– a device like an eye exam head rest that could measure how well you can turn your head left, right, up, down and how far you can tilt it
66.67% Yes that sounds potentially useful
5.56% No not likely useful
27.78% No not likely practical (eg for size or cost) (20B-10)
-a flat screen with handprints on it that you could stretch your fingers out to match, that could measure how straight you can make each finger and how far apart
60.00% Yes that sounds potentially useful
40.00% No not likely useful (20B- 14)
-a reclining chair with legs elevated that could measure how well you can lift, turn, bend your legs with sensors to measure the angles
46.67% Yes that sounds potentially useful
26.67% No not likely useful
26.67% No not likely practical (20B-15)
-a soft sensor around your foot to measure angles you can turn and move your foot to see if those are the same on both sides or change over time
60.00% Yes that sounds potentially useful
26.67% No not likely useful
13.33% No not likely practical (20B – 16)
-a device where you can put your hands into two stationary cuffs that measured how much you can turn and twirl and move each wrist
46.67% Yes that sounds potentially useful
53.33% No not necessary (20B-17)
– a device that you could put around your foot to measure how much you can turn your ankle
53.33% Yes that sounds potentially useful
46.67% No not necessary (20B-18)
-a wall display computerized image of a body like yours and you go through motions to match it, to bend forward and to the side, to tilt left, right, lean back and compare by calculated angles how well you match the range of motion of the image
86.67% Yes that sounds potentially useful
6.67% No not likely useful
6.67% Useful but not practical (20B- 13)
-a device with a sensor to measure the range of your shoulder shrugs up, down, forward and back
61.11% Yes that sounds potentially useful
38.89% No not necessary (20B-11)
1C – tech – pain
-a way to mark your body to show where it hurts
72.22% Yes that sounds potentially useful
27.78% No (20B-8)
-a screen in front of you with a 3D drawing outline of a body that you could touch to indicate precisely where you feel pain and the screen would save those dots that lit up and could compare them over time
62.50% Yes that sounds potentially useful
31.25% No not likely useful
6.25% No not likely practical (20B-36)
-a way to mark your body to show where to inject medication
61.11% Yes that sounds potentially useful
38.89% No not necessary (20B-9)
-a demonstration of types of pain- pin prick, tiny electric jolt, constant vibrating, pressure like a tightening blood pressure cuff – to illustrate the definition of words for pain and try to reach a common ground for terms, then to rate your pain in muscles with dystonia
57.14% Yes that sounds potentially useful
14.29% No not likely useful
28.57% Not likely accurate or practical (20B-35)
-a dial you could turn to indicate the pain you are experiencing in various body positions
53.33% Yes that sounds potentially useful
20.00% No not likely useful
26.67% Not likely practical (20B – 34)
1D – tech- tightness, grip, clench
-a material that would squish to see how much your fingers clench up and whether this is equal on both sides or changing over time
46.67% Yes that sounds potentially useful
53.33% No not likely practical (20B-23)
-a device that puts gentle sensors on your face to determine which muscles are moving in odd ways, which ones are tensing up and to see if this is changing over time
62.50% Yes that sounds potentially useful
31.25% No not likely useful
6.25% Not likely practical (20B-41)
1E- -tech – heat of muscle
-a device that senses by heat of a muscle which ones are struggling
70.59% Yes that sounds possibly useful
11.76% No not likely useful
17.65% Useful but not affordable (20B-7)
1F – tech- eye
-a device that measured eye response to a bright light, flashing light or darkness
73.33% Yes that sounds potentially useful
26.67% No not likely useful (20B-20)
-a device like eye doctors have that would measure how well each eye can track an object on a screen to see if there are problems with eye muscles
73.33% Yes that sounds potentially useful
20.00% No not likely useful
6.67% No not likely practical (20B-19)
1G- tech- response time
-a computerized wall display of dots you touch that would measure your arm motion as the dots moved, kind of like an eye exam but for arms
66.67% Yes that sounds potentially useful
33.33% No not necessary (20B-12)
-a device that could measured your reaction time to a sudden noise, a burst of air or a bright light to see if you are overreacting or delayed reacting
62.50% Yes that sounds potentially useful
25.00% No not likely useful
12.50% Not likely practical (20B- 31)
1H – tech- stance, gait
-a 3D scanner that when you stand in it has sensors to calibrate your stance, your compensations of leg or arms to stay balanced, and that can compare the record to see if it changes over time
75.00% Yes that sounds potentially useful
6.25% No not likely useful
18.75% Not like practical (20B-32)
– a device that could study your gait as you walk down a hall, calibrating stride, speed of motion, width between feet, body tilt to each side, body leaning forward or back arm swinging angles to compare to a normal range4 and to see if your gait is changing
68.75% Yes that sounds potentially useful
25.00% No not likely useful
6.25% Not likely practical (20B-33)
1I – tech- spasm, jerk, tremor
-a featherweight device you could place on top of your outstretched hands at rest that would change color or calibrate how much your natural tremor made it jiggle
66.67% Yes that sounds potentially useful
26.67% No not likely useful
6.67% Not likely practical (20B-28)
-a sensor that when you rested your hand or forehead lightly on it could sense vibration and measure it
80.00% Yes that sounds potentially useful
20.00% No not likely useful (20B-27)
-a video program that recorded your body seated or standing still and tallied the number of twitches or jerks per minute and that compared that to the number as you start to stand, start to walk or walk
66.67% Yes that sounds potentially useful
26.67% No not likely useful
6.67% Not likely practical (20B-29)
-an instrument to count your spasms to see if they are worse in certain positions
78.57% Yes that sounds potentially useful
14.29% No not likely useful
7.14% Not likely practical ( 20B-30)
1J- tech speech
– a device that measures the volume of your speech with an onscreen display that showed areas that departed from consistent volume or speech range
73.33% Yes that sounds potentially useful
20.00% No not likely useful
6.67% Not likely practical (20B-39)
-a device that measured the rhythm and clarity of your speech when you are singing, yelling or whispering to see if those differ from your normal conversation
66.67% Yes that sounds potentially useful
20.00% No not likely useful
13.33% Not likely practical (20B-40)
1K – tech- sensory tricks
-a 3D screen image of a body so you could show precisely where you touch to do the sensory tricks and to compare that with tricks others use for similar dystonia
66.67% Yes that sounds potentially useful
20.00% No not likely useful
13.33% Not likely accurate (20B-37)
2 other research – lab animals, genetic modification
-Researchers have been able to alter animals in a lab to have gene mutations modelling dystonia. It has been an areas of research in worms, fruit flies, mice and rates. The controversy arises since these are experiments about genetic manipulation. Information used helps understand what genes and proteins are involved and what drugs work. Do you approve of use of lab animals for such research on dystonia?
75.00% Yes
25.00% No (20B-42)
H. Analysis
The issues about nontech questions such as brain and muscle function theories were asked in survey 20B but have been filed by category in their appropriate other sections for analysis. The analysis of them is found in the surveys about motion, daily activity, coping, moods as they relate, to the topic.
The questions on technology alone were retained in this analysis from survey 20B. These questions are a set then, about tech itself.
Anecdotally patients often report that compared to the office of an eye specialist or a dentist, the neurology office seems to have little technology. The surveys indicated strong endorsement of more technology.
The surveys did not make clear and likely should have, whether this technology would be only at the doctor’s office or also a version of it would be useable at home. Better question design and greater awareness of current app technology would help create a wider range of questions.
Respondents did not seem concerned about invasion of privacy of this technology though the question was not precisely asked. There was no option to object to tests of pain by displaying pain for instance and this objection could have been an option.
There was opportunity given to consider reasons the technology might be a problem, including that it would not provide the desired measurement, would not be accurate, would not be affordable or would not be practical. Respondents seem to have been pleased to participate, and willing to look at considerations about wise expenditure of medical resources in the community and personally. The responses suggest that people with dystonia want help to diagnose, compare progress, assess treatment and see patterns of their own condition but they also understand priorities about cost and effectiveness.
Technology may produce benefit, leading to faster diagnosis, more accurate treatment, shorter appointments, fewer delays to get appropriate care. Technology reveal patterns over time for one patient and across patients comparatively and may suggest avenues of research about the way dystonia works.
Medical insurance companies which are asked to fund consultations and treatments, and government health providers asked to do the same, would likely be anxious to reduce these long term cost and may see merit in use of such technology.Biomedical engineers may be a resource, even during their university training on projects, to help create such new technologies.
Lived Experience With Dystonia 