Flying is my least favourite mode of transportation. Unfortunately it’s also the most convenient way to travel outside of Europe.
After my brain injury I was very curious about whether or not I’d still be able to fly (by myself). This called for an experiment.
Trying out flying
My first flight was a year and a half after my brain injury. At that time I could handle far less compared to the situation now. I had far less energy and got overstimulated very easily. Or maybe I had yet to discover how I should handle the ‘new me’.
So I avoided places with a lot of people. As fifteen minutes in a busy place would deteriorate my speech, thinking and balance quickly. Flying thus was written of in advance.
Luckily someone told me about the special assistence you can request when you plan to fly. This service makes it easier for people with any kind of disability to travel by plane. Once requested in advance, someone will escort you all the way into the plane. Which means that you get a lot faster through the airport and can save some precious energy. This service made flying suddenly a possibility.
And as a result I had two succesful flights within Europe. Which meant that it was time for the next step. To take a long flight and to try it without any kind of assistance.
A ten hour flight
That long flight was my flight to Sri Lanka last week. This time, not the airport but the flight itself was the most challenging. In the airport I had my earplugs, noise cancelling headphones and sunglasses and could hide out in a quiet corner. I even made a reservation for an airport lounge to rest in, which almost made me forget I was at an airport.
In the plane however, you can’t leave. Blocking out the world is a whole lot harder if there’s nowhere for you to go. This made the flight challenging, thought the last three hours of turbulance might also be to blame. Still I learned some lessons for my next flight in five weeks.
Know your triggers
I always find travel days extremely stressful. Nine out of ten times this culminates in a panic attack. This time was no different. Thankfully I recognised I was having a panic attack early on, so I could do something about it.
Follow your gut
If you notice that you stress yourself out over something, try and do something about it. I kept chaecking my watch every other minute, because I was afraid to be late. After an hour of annoying myself I finally decided to just go to the airport way too early. Looking back I should have done that earlier.
Plan your route
Nowadays, I think you can find the map of almost all airports online. This means that you can plan where to go in advance. Knowing where the lounges, quiet areas or prayer rooms are located beforehand can give you some piece of mind. Once you’ve passed security at the airport you already know the shortest way to where you plan to rest.
Keep a choice of distractions ready
Once you’re seated in the plane, it’s a matter of sitting it through. Of waiting until the plane has landed and you can get off. I discovered that I can’t read or watch tv on a plane. My mp3 player is therefore filled with different kinds of music. Music to sleep, to distract or to cancel out other noises. Make sure you have the option of distractions for the duration of the flight.
Keep yourself hydrated
Any time you get offered a drink on the plane, take it. Not only will it help you to stay hydrated (so don’t pick an alcoholic drink) it’ll force you to go to the toilet. In other words to stand up and walk around.
The second or third day after the flight, I’ll feel the consequences. So listen to your body. If you need to sleep for 12 hours, do that. If you crave sugary or salty snacks, have those. Flying is hard and challenging, so take some recovery days into account and allow yourself some rest.
– I can only speak from my own exprience, so do check with your doctor if you have specific requirements to take into account when flying –
What do you do when you fly? Do you have or need something special that really helps you?
A stroke is a medical condition where due to certain reasons, inadequate blood flow to the brain results in cell death. Strokes are one of the leading cause of death and disability, not only in India but all over the world. They affect about 15 million people worldwide and have left almost 5 million disabled.
According to studies, almost 75% of stroke victims become physically disabled, and out of those, 77% suffer upper limb weakness, with muscle numbness and difficulties in carrying out daily activities. Therefore, stroke rehabilitation plays an integral part in preventing post-stroke disabilities and helping a person return to regular life.
Physiotherapy is often an essential part of rehabilitation after a stroke and helps the patient to recover muscle strength, joint movement and a range of vital capacity.
Researchers at IIT Gandhinagar have incorporated an ingenious solution—computer-based VR games—to address upper-limb movement disorder in post-stroke victims.
Virtual reality or VR gives users a sense of touch when augmented with add-on instruments. Putting advances in the field of VR to use in the recovery of stroke patients, Dr Uttama Lahiri and her group have developed a technique which is a computer-based exercise platform, which is a performance-sensitive platform that can intelligently adapt itself according to the performance of patients.
This virtual gaming world is augmented with a sense of touch in which patients can feel objects in the game environment and can manipulate objects with their movements. Using this as a cornerstone, patients interacting with the simulated environment can help in practising reaching and coordination tasks.
“Computer game-assisted upper limb recovery seems to be a novel method for assisting recovery of brain functions after stroke. Such game-based recovery may help in precise motor unit activation which makes the recovery, rational and task-oriented,” commented Dr Vijaya Nath Mishra, a stroke specialist at Sir Sunderlal Hospital, Banaras Hindu University, who is not connected with the study to India Science Wire.
A unique aspect of this virtual-reality exercise is that it can intelligently adapt itself based upon the task performance capability of the patient, allowing the user to be more motivated to complete the challenges and simultaneously ensure that he or she gets treated in the process of playing the game itself.
The software of the platform consists of 48 templates of VR-based ‘reaching’ and ‘coordination’ tasks, like navigating a car through obstacles and popping balloons, which ease the movement of the shoulder joint and upper limbs as prescribed in physiotherapy guidelines.
The technique has been tested in a set of six patients with chronic stroke, who interacted with the system for 30 mins per day for a week. The results showed drastic performance improvements in the following:
(i) Increase in performance score
(ii) Reduced task completion time
(iii) Reduced performance errors
All imply an increase in terms of agility in the upper limbs.
The user-friendly and easy to operate software is not only capable of providing real-time feedback but is also individualised and adaptive to one’s capabilities. With the scores being monitored by a physiotherapist while the patient can take up the test in his home.
“We designed and validated this exercise platform among post-stroke patients, and the results are promising,” said Prof Lahiri in India Science Wire.
Vilayanur Ramachandran tells us what brain damage can reveal about the connection between celebral tissue and the mind, using three startling delusions as examples.
Neurologist V.S. Ramachandran looks deep into the brain’s most basic mechanisms. By working with those who have very specific mental disabilities caused by brain injury or stroke, he can map functions of the mind to physical structures of the brain.
Hello, my name is Faith and I’ve been managing depression and anxiety for as long as I can remember. I started this blog to share my tips and tricks and help other bad ass babes kick ass on their mental health journey. I have an online support group you can join for free here. If you need help finding a mental health care provider call 1-800-662-HELP (4357) or visit BetterHelp to talk to a certified therapist online at an affordable price.
This post contains affiliate links, you can read my full disclosure policy here.
I went down the rabbit hole of TED talks again and I thought I would share these awesome TED talks about depression. These aren’t all uplifting but sometimes you need to hear some realness. Positivety kind of feels like a big pile of garbage when you’re depressed anyways (if you’ve ever tried to watch a motivational talk when you’re depressed you probably know what I’m talking about). If you’re depressed and looking for resources checkout my articles on depression and download my free mental health planner.
David Burns talks about using cognitive therapy to treat his depressed patients. He helps his clients to change how they think in order to change how they feel.
Kevin Breel talks about breaking the stigma of depression. If you are feeling depressed and feel like you are along trust me you’re not. There are lots of us out here struggling with depression. I have a mental health support group on Facebookthat you can join if you are looking to connect with other people who are struggling with mental health.
Zindel Segal has been treating his depressed clients by teaching them to appreciate the present moment. Try out the techniques in his talk and see if you think they can help you.
I love her story about communicating with her 2 year old in a positive way. She started trying to practice unconditional positive regard with her kids and then started trying to practice giving unconditional positive regard on herself.
Here’s a kids TED talk from a girl that was hospitalized from depression and anxiety.
In this paper, a novel walker robot is proposed for post-stroke gait rehabilitation. It consists of an omni-directional mobile platform which provides high mobility in horizontal motion, a linear motor that moves in vertical direction to support the body weight of a patient and a 6-axis force/torque sensor to measure interaction force/torque between the robot and patient. The proposed novel walker robot improves the mobility of pelvis so it can provide more natural gait patterns in rehabilitation. This paper analytically derives the kinematic and dynamic models of the novel walker robot. Simulation results are given to validate the proposed kinematic and dynamic models.
Stroke is one of the leading causes of death overall the world . According to a report from the American Heart Association, around 8 million population experience stroke onset every year worldwide . It remains many sequalae including a pathological walking pattern. Impaired walking function refrains stroke survivors from not only activities of daily living but also social participation, which causes poststroke depression in stroke survivors . Unfortunately, the depressed mood also negatively influences on the recovery of daily functions –. Moreover, decreased mobility is associated with other diseases such as obesity which leads to comorbidity then raise the possibility to get recurrent strokes , . This might become a vicious circle and form a huge economic burden for governments .
Griswold Home Care, a provider of services to help adults age in place, launches CaregiverResource.com, a website designed to offer resources, tips, and inspiration to professional, volunteer, and family caregivers.
The website also links to pages of the Institute for Professional Care Education (IPCed) and the Family Caregiver Alliance, a nonprofit support group for caregivers.
Additional features include quotes and testimonials from professional and nonprofessional caregivers, career and salary information, job openings within Griswold Home Care, and a feature called “Ask Allegra,” in which 35-year GHC caregiver Allegra Chaney shares advice in response to visitors’ questions, according to a media release from Griswold Home Care.
“Griswold Home Care has long been committed to ensuring quality care for our clients, going back to our company’s founding by Jean Griswold, and we’ve taken that wealth of collective experience to assist caregivers both within and outside of the Griswold family,” said Matt Murphy, president and CEO of Griswold Home Care, in the release.
“We developed CaregiverResource.com to be a lighthouse and source of information for caregivers and those looking to enter the field.”
With just 28 days in February, this month’s Epilepsy News is with us a little earlier than usual.
If a significant event pops up in the final seven days of February this year, then I’ll try and talk about it in next month’s edition as well. But with topics of technology, treatment, campaigning and design involved today, I’ve got plenty of interesting stories to tell you about what’s been happening around the world with epilepsy.
Seizure Prediction is Looking More Likely
Researchers in Melbourne recently became more excited about the advancement of new, seizure predicting technology. By recognising patterns in the brains electrical activity, algorithms have been trained to pre-empt epileptic seizures.
At St. Vincent’s Hospital at the University of Melbourne, senior researcher Dean Freestone, PhD, and chair of medicine Mark J. Cook, MD, have now launched a company called Seer Medical. Here the new technology can hopefully be pursued with patients implanted with it later this year.
Likely to be contained in a chip inside a wearable device like a wristband or bracelet, the new forecasting technology would probably work best for people who typically have seizures about once a week.
For me, this new technology sounds interesting. I have a seizure approximately once every two weeks and reckon it could become so useful for myself. However, if people have seizures once every hour, or if the seizures are too infrequent, researchers have stated that it is difficult to train the algorithms.
But by knowing when seizures are coming along, I can understand why people who have tested this technology have felt more comfortable doing everyday activities. After being tested, people also claimed to benefit from improved sleep and decision making too.
Knowing when my seizures were due would be a handy tool for me and the people who have to keep an eye on me when they occur. It’d give me the chance to put myself in safer places beforehand, and even find ways to prevent them.
Being designed in Australia, I only hope we don’t have to wait too long before we have some form of the technology made available in the UK.
Genomics Set to Speed Up Epilepsy Diagnosis
Right now, epilepsy diagnosis can be completed with the use of various scans, including EEGs, CTs and MRIs. Although they work, these scans don’t give doctors much information regarding the type of issues their patients will be facing with their epilepsy.
However, genomics interpretation software company Congenica has now teamed up with FutureNeuro, an SFI Research Centre for Chronic and Rare Neurological Diseases. This new partnership is working on a programme that will give doctors a much easier way to make a diagnosis of genetic epilepsy.
With the use of genomics, doctors may now be able to get a better and quicker view of the many challenging possibilities of epilepsy. This would lead a way to start individualising treatment and prognosis in the clinic. All in all, the earlier diagnosis would see positive impacts on the patient and their family.
Speaking recently, Congenica’s CEO, Dr David Atkins said: “We are excited by what this collaboration could mean for patients and their families around the world. The types of genetic mutations that this project will focus on are thought to be at the root of as much as 40 per cent of childhood epilepsy.”
I don’t suffer from genetic epilepsy, but wish this new partnership well in finding what they need to bring better diagnosis to children who may gather the condition through their mother, father and other family members.
An Update on Alfie
Back in September, I told the story of Alfie Dingley, a 5-year-old with epilepsy whose parents were due to take him to the Netherlands so he could receive cannabis oil treatment to stop his daily seizures.
After about five months, Alfie has now returned because he has no health insurance in another country. Now his parents are back in the UK, they hold a great passion for gathering their son a medical cannabis licence. However, their recent request was denied by the Home Office, who said the drug “cannot be practically prescribed, administered or supplied to the public”.
Alfie’s mother, Hannah Deacon, is clearly very much upset by the response. Right now, Alfie suffers from up to 30 violent seizures a day, but when receiving treatment in the Netherlands, he went for 24 days without a single attack.
Speaking on BBC News, Hannah told presenters that she wanted to speak to MP’s Amber Rudd and Jeremy Hunt, saying: ‘I want them to know my reality with my son in A&E every week, watching him have a seizure, watching him go purple; wishing that he will live.”
I know this isn’t positive news to tell my readers about. But it is another clear reason that I wish to raise awareness of epilepsy, and speak out for people with difficult health conditions.
Medical cannabis won’t just be useful for Alfie – it was recently made more legal to use in various states across the USA. It doesn’t just help people with epilepsy and will be helpful for many other people with various health problems in this country as well.
Avocado Diet Helps Manage Epilepsy
After struggling to stop up to sixty seizures occurring every day with conventional medication, five-year-old Leafy Liu now only suffers around four seizures a year. Her patterns have improved greatly with her new ketogenic diet, which has had her parents spending £1,200 and Leafy eating approximately 3000 avocados – at least two a day for the last four years.
The ketogenic diet was discovered by her parents Justin and Claire after their daughter first started having seizures when she was six months old. They were scared by her first seizure, which lasted for 25 minutes and led to her being taken to the hospital.
As time continued, Leafy’s seizures became more frequent, with 60 minor seizures sometimes occurring in a day, and her longest seizure lasting for around 45 minutes. Because of the side-effects involved with anti-epileptic drugs, her parents searched online for an alternative solution to their daughter’s issues.
Here they came across the ketogenic diet and were quickly stunned by how effective it was. High in fat and low in carbohydrates, burning fat for fuel is said to be better for the brain. Within two days, they started to see big changes occur, and Leafy moved quickly from having up to two major seizures a week to having just one seizure a month.
Although a lot of fruits are avoided with the ketogenic diet, it seems to have started their daughter Leafy’s passion for avocados.
Speaking from their home town of Loughborough, father Justin said “The avocado has been a real staple; she absolutely adored it from the word go.
“We’ve spent a fortune buying them, but it’s been worth it. They are wonderful.
“It’s amazing. When I see what other children are eating for lunch, and compare it with what Leafy has, I think it’s so much healthier this way.
“When she was at her worst, I could never have envisioned that avocado would be the thing to help her through, but that’s how it’s turned out.
“We’re just so thankful that we discovered the diet when we did because it’s changed all of our lives for the better.”
Teenager’s Poster Keeps an Eye on Invisible Conditions
Out of all the individuals this month, I’ve been most impressed by the poster design skills of 18-year-old Thomas Bell, who suffers from epilepsy, dyspraxia and hemiplegic migraine. Tom was born with epilepsy, but after having to live with all of his invisible health conditions, he’s designed his poster campaign through Fixers, the national charity that looks to give young people a voice.
As a whole, Tom intends to shine a light on invisible conditions. Although better controlled now, Tom used to have to manage migraines as often as twice a month. Living with epilepsy, Tom was bullied by his peers in school, who used to flash lights in his eyes and say “I want to see you have a fit.”
He believes the reason for them doing this was because his conditions are invisible, and they didn’t take them seriously. These frustrating times have led Tom to create his poster, which involves a cartoon of himself explaining epilepsy, dyspraxia, hemiplegic migraines, and gives further information about why he’s designed it.
The poster’s heading states ‘Not all conditions are visible. If you could see my pain maybe you’d understand’.
Since they’ve been created by Fixers, Tom has said that he’s happy with how the posters have turned out, and now wants to campaign with them in local schools to drive home the message.
This month has seen the inclusion of mainly positive news stories. People and companies mentioned have impressed me with the way they’ve exploited their efforts to improve epilepsy in different ways.
Right now, I only hope to keep an eye on the projects that are currently being developed, so I can take advantage when they come along to be beneficial to myself and others in the future. As well as that, the story of Alfie Dingley’s difficult life makes me want to play a part in getting cannabis oil treatment legalised in the UK.
The poster brought forward by Thomas Bell shows that he’s got similar interests to me too. He’s only 18, and I don’t want to push him into any career movement – but if I can give him a helping hand with his campaign, I wouldn’t turn it down.
Treatment option for individuals living with refractory epilepsy now available at UC San Diego Health
UC San Diego Health now offers patients with epilepsy another non-pharmacological way to treat seizures. For the more than one million individuals who live with uncontrolled seizures despite taking medications, UC San Diego Health recently began offering the first and only FDA-approved brain-responsive neurostimulation (RNS) system designed for the treatment of refractory epilepsy.
“This device is approved for use in patients who have seizures coming from up to two different locations in the brain,” said Jerry J. Shih, MD, epileptologist and director of the Comprehensive Epilepsy Center at UC San Diego Health. “When unusual brain activity is detected, the neurostimulation device sends brief painless electrical pulses with the goal of disrupting the emerging seizure and to normalize brain waves.”
Shih added, “This device provides another treatment option for patients who were previously not candidates for traditional surgery because the seizure focus was in or near important brain structures controlling memory, language or movement.”
“In clinical trials, patients treated with this device experienced substantial seizure reductions in the first year that continued to improve over time,” said Sharona Ben-Haim, MD, neurosurgeon at UC San Diego Health. “The device continuously monitors and detects the patient’s unique brain activity, allowing us to personalize treatment for each individual.”
Epilepsy is a neurological condition in which patients experience seizures, sudden surges of electrical activity in the brain. Symptoms range from brief staring spells to uncontrollable limb movements. About one in 26 people in the United States will develop a seizure disorder. Treatment with medications can control seizures for 60 to 65 percent of patients, but 35 to 40 percent of patients continue to have seizures, affecting their quality of life.
Called the RNS System, the device is the first and only closed-loop, brain-responsive neuromodulation system. The neurostimulation system consists of a small, implantable neurostimulator connected to leads (tiny wires) that are placed in up to two seizure onset areas. The system comes with a remote monitor that patients use at home to wirelessly collect information from the neurostimulator and then transfer it to a patient data management system.
The patient’s neurologist can log into this system at any time to review accurate, ongoing information about the patient’s seizure activity and treatment progress. This helps physicians learn more about their patients’ seizures and improves patient care.
The RNS System was developed by NeuroPace, Inc. in Mountain View, CA. The system was approved by the FDA in November 2013. More than 1,300 patients have received the device nationally.
The Comprehensive Epilepsy Center at the UC San Diego Health Neurological Institute is the only nationally designated Level 4 Epilepsy Center in the region. It offers the latest technological advances in diagnostics, medical therapies, surgical procedures and clinical trials.
The epilepsy team includes epileptologists, neuropsychologists, neuroradiologists, epilepsy neurosurgeons, EEG technologists, clinical nurse specialists, and researchers.