Tag: LGS

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Late last summer I began considering how best to tackle a challenge posed to me by my mother. A challenge to develop an app for my brother ( An aid in a diminishing world ). Due to university coursework restrictions and constraints, after my intial brainstorm back in August I have only just now been able to create a low-key prototype in the form of sketches. After working alongside my mother to create a set of requirements, I have now attempted to put those functions into a visual representation. Following a user-centred approach I will be working alongside my mother and other individuals to help develop this app into a useful aid for other carers of people like my brother ( The deterioration of an infantile ).

Homescreen of app
The main homescreen

As of yet I have not designed a homescreen and keeping with the process of user-centred design I have not begun coding until I am sure that what I am designing meets the needs of my mother, the 'client'. From the start I wanted this app to be a clean, simple to use application. Most of the users will be in situations similar to my mother and will be a carer 24/7. Any moment spared will not be spared updating the details of the app if it is a lengthly or confusing process. As a result, I have decided to try and make this a binary process as much as possible. By separating the 'Seizure' and 'Challenging Behaviour' logs I will be able to speed up the update process. As you can see on the homescreen here I have just a handful of buttons.

Adding a new seizure menu
Adding a new seizure menu

Likewise, the input variables when adding a new seizure or challenging behaviour incident should be clear and concise, representing only the main options that users will need. Wherever possible, drop-down options should be available to minimise time spent adding a new incident. Creating two colour schemes is hoped to help the user identify which section of the app they are currently in making them less likely to incorrectly add an incident. With regular feedback the user will be able to understand any errors or issues that may arise. It must be noted that some of my scrawled notes relating to buttons on screen are merely brainstorming ideas that I have included.

jTrack challenging behaviour graphs
Track challenging behaviour graphs

Finally, the main goal in designing this app is to allow to user to clearly identify the main seizures and their frequency. By providing a concise graph that shows the output of the data entered by the user, they are able to see the trends of various individual seizures against time or against the total number of seizures. It is thought that a line graph may work well but the meeting with my mother will confirm whether this is the ideal form of output.

Although I am fully aware that this app only acts as a method of creating graphs, something that any spreadsheet could do, having this app on a mobile platform will enable the user to have more accurate and up to date information at their fingertips. My mother has expressed a hope that this will help her to monitor my brother's level of seizure activity and challenging behaviour more efficiently. It is my hope that I am help make this a reality for her and others in her position.

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He's deteriorating more rapidly than we expected. Each day I spend with him is another day that I see him slip that little bit further away from me. My brother, the last biological link I have to my father is fading. More and more I see him confused in his surroundings, unable to dress himself or, at times, even control his bladder. It's hard sitting by and watching my seventeen year old brother sitting slumped over in the chair, shaking so hard that he is unable to hold anything. To have to help feed him at times because he cannot managed holding the fork by himself. Granted, these are the worst days that I'm describing but each event has happened in the last week.

With a hospital visit already in the last couple of weeks and one a possibly on the cards last night, I'm wondering how much longer my mother can handle the stress and emotional turmoil that this is creating. How my mother can continue to spend most nights checking hourly on my brother whilst remembering what is going on in my life and still managing to spend time with my other brother I do not know. With talks on the table of long stays in the hospital for Callum to have an EEG to finally get to the bottom of his deterioration, I'm wondering how much longer Callum will continue to manage things on his own. I just hope that he stabilises soon as what he is currently doing is not living. Well, except on the occasional bright day of his.

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In a previous post I discussed the struggles my mentally disabled brother, Callum, faces (The deterioration of an infantile). With a steady increase in his seizure activity and challenging behaviour my mother approached me with an idea for a device that after taking in data about Callum's seizure activity, would be able to draw up some graphs to give her a better method of comparing his current level of seizures to an earlier date.

Now as an Applied Computing student at Dundee University this was a project that interested me, firstly for the fact that I knew it would be of benefit to my mother - along with other carers - and for the challenge. I have only just finished my first year of the BSc course making me less familiar with the development platforms available but I am eager to develop this software as an app. As so many people use a smartphone now it would make the software more accessible to the people who benefit from its use.

After brainstorming some ideas with my mother, I have come up with the following criteria:

Required features:

  • Seizure part of device:
  • It must be able to input the:
  • Type of seizure
  • The length of seizure time
  • The length of recovery time
  • Any triggers (if applicable)
  • The surrounding environment as a possible cause
  • Any other notes
  • Record the date and time automatically of the event
  • Take the data and convert them into accessible graphs showing:
  • The frequency of all seizures over a given time period
  • The frequency of a particular type over a given period
  • The comparison of a particular type of seizure with the overall frequency of seizures over a given period
  • The frequency of all seizures at a particular time over the course of a day
  • The frequency of a particular seizure at a particular time over the course of a day
  • A comparison of the frequency of a particular trigger over a period of time
  • A comparison of the frequency of a particular surrounding environment over a period of time

Challenging behaviour part of device:

  • It must be able to input:
  • The length of challenging behaviour time
  • Any triggers
  • The surrounding environment as a possible cause
  • Any other notes
  • Record the date and time automatically of the event
  • Main signs of challenging behaviour
  • Steps taken to try and reduce chance of challenging behaviour (if applicable)
  • If steps taken to try and reduce outburst, were they successful?
  • The severity of the out burst
  • Take the data and convert them into accessible graphs showing:
  • The frequency of challenging behaviour over a given time period
  • The frequency of a particular severity over a given period
  • The comparison of a particular severity of seizure with the overall frequency of seizures over a given period
  • The frequency of challenging behaviour at a particular time over the course of a day
  • The frequency of a severity at a particular time over the course of a day
  • A comparison of the frequency of a particular trigger over a period of time
  • A comparison of the frequency of a particular surrounding environment over a period of time
  • A comparison of the success rate of a particular step to reduce outburst
  • A comparison of the most frequent signs of challenging behaviour

Additional bonus features:
The ability to enable multiple users on a single device through assigning usernames. As many carers work with a multiple of users it would enable carers and parents to use their own personal devices so that a more complete picture is built up. For the purposes of analysis, a psychologist may be given the usernames and password of a particular patient by their parent or guardian. This would enable the psychologist to compare their patients to better suggest a course of action for another family. Also, with a personal profile on the user’s profile, the parent or guardian could enter the medicine and condition that the individual has to enable a comparison for the psychologist of their patients based on medicine to find similar trends. Although it is hoped to have the software available on a portable mainstream device, it is acknowledged that not all families have access to these devices so it is intended for a user friendly website to be set up in order for the parents to input, compare and update the profile information. In order for this to be successful the ability to override the current time and date with one if a parent or guardian is inputting data at a later point after the incident has occurred.

Perhaps in time, with consent of the parent or guardian, a wider comparison may be made from all the input from all devices in order to provide a wider picture to enable carers to try new methods of reducing incidents for the individual. This information would be anonymous and would be in the form of graphs using only the statistical information provided by the carers.

Suggestions
Like I have already said, I am new to the world of coding and development but I have an idea of what I want and am in the process of drawing out screenshots of the software. I would appreciate any suggestions of an approach to develop this idea. If anyone has any other suggestions for more aspects of the advice, please don’t hesitate to comment below. As this software is intended for improving the lives of the family members and providing a means of comparison, I want to include as many positive aspects as possible. My boyfriend, a fourth year applied student, has agreed to assist me with the coding of the software but we would welcome any other help regardless of where you are based. My goal is to make this affordable and accessible to as many families as possible. Watch this space for more information.

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Many of you, although knowing me rather well, do not know the eldest of my two younger brothers. Callum is a seventeen year old who was diagnosed with Lennox-Gastaut Syndrome when he was four and a half years old. Before the doctors got his epilepsy stabilised, our lives were turned upside down.

Callum started off having what is known as a 'drop attack', where his body would be flung backwards and he would often hit his head off the ground. These seizures were often quite dangerous to him and led to many stitches on a single patch of his head. That patch has now been made hairless due to the significant amount of times that he ended up splitting the skin open. We went through endless nights of bad seizures, stages where Callum had to permanently wear a bicycle helmet on his head to reduce the damage and endless trips to neurologists, doctors and the hospital.

I've grown up with Callum having LGS and watched him rise and fight his syndrome when he was moved out of mainstream schools into private home schooling. At around nine years of age he was relatively stabilised, as much as would be expected, and despite the fact that he has a retarding epilepsy he was doing okay at school and life. Then we moved to America. There was no more home-schooling, he struggled in mainstream classes with 'special help' and started having a new type of seizure that was potentially fatal. Non-convulsive status epilepticus, a seizure where the person slips into an almost coma-like state. Callum would sometimes slip into these states for several hours, something that really concerned my mother. Anyway, Callum and I moved to Dundee, Scotland to live with our father where we lead a considerably more routine based life. This was what Callum needed. He managed to get into a special school for children with special needs. In his class of around six people, Callum did well. He even managed to gain some minor credits towards his standard grades (O Levels/GCSEs). Due to the fact that his epilepsy is a retarding condition his mental age has been an average of around six or so years of age. So, Callum was improving. His seizures were becoming more managed and although he had peak of challenging behaviour he was appearing to stabilise. Then everything changed.

My father passed away suddenly when Callum was nearly fourteen years old throwing him into a world of confusion and distress. Combine this event with puberty, a change of routine due to my mother and younger brother moving in with us and a new school all within the space of one year. A single one of those changes would be hard for an able bodied person to cope with at his age, but his autistic characteristics and traits of the LGS made Callum's (expected) deterioration to increase at a much faster rate than was expected.

In the past two and a half years since my father's passing, I have watched my brother increasingly become more confused, isolated and withdrawn as his challenging behaviour becomes a threat to us and those around him. As LGS is such an uncommon form of epilepsy it makes it hard for my mother to compare Callum to other children and the fact that he also exhibits traits of autism makes things even more complicated.

It's emotionally pulling to watch as Callum forgets how to carry out the day to day tasks, forgets how to play his favourite sport and just generally struggles to cope with society and life itself. As I watch how other people treat people with disabilities in such poor ways I get frustrated and angry. I must confess that part of me is glad that Callum's life expectancy is lower than that of the average British person as it is my hope that he will not have to endure the comments directed at these people form whom each day is a battle. In his own little world Callum is content and oblivious to his deterioration, much like an elderly person he is fading back into the dependent state in which everyone is born. For now though I am simply thankful that although his deterioration and ability to cope is hard to miss to the external world, Callum is relatively content to live his life in a world that fades with each passing day.