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‘Eye tracking technologies are vital life links for ALS patients’

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Eye tracking technology is proving to be a lifeline for people living with ALS, delivering vital communication assistance which helps to break isolation. Here, leading healthtech influencer and ambassador for health innovation Gil Bashe discusses the power of such intervention

 

The moment the flood of ice-cold water poured over my head, there was shock and silence; seconds afterward, my senses returned. I blurted out: “That’s cold!” Family nearby laughed, the moment passed, and the video of my ALS Ice Bucket Challenge was shared online. Mission accomplished, or so one might think. 

My state of frozen speechlessness was over in a moment, but for people diagnosed with ALS (amyotrophic lateral sclerosis also known as Lou Gehrig’s disease), that state doesn’t just last for a moment. It’s an ongoing, harsh and frightening reality that makes life more difficult and can actually shorten it. 

LOSS OF SPEECH SIGNALS LOSS OF CONNECTION

Verbal and physical communication connects us. It is essential to life. But impaired speech (dysarthria) is among the first symptoms evident with ALS. As the disease advances, degradation of the nerves that control lip, jaw, tongue and vocal cord movement causes reduction in muscle stimulation. Unused muscles grow weaker and weaker, to the point where 80 to 95 per cent of people with ALS cannot fulfill their communication needs using their voices alone. In time, most become silent, unable to speak at all, and it’s this loss that isolates ALS patients perhaps more than any other aspect of the disease.

New clinical research points to promising investigational therapies that may slow the progress of ALS. This is important, but patients struggling now lack the luxury of time. While they wait, there are other innovations that can make their lives better and ease their isolation, especially health tech that assists essential communication. But these technologies only work if patients can get access to them.

EYE-TRACKING TECHNOLOGY OFFERS PEOPLE WITH ALS THE ABILITY TO COMMUNICATE

Advancements in precision eye-tracking can enable many with ALS to tap into lifestyle-assistive technology options. As leg, arm and lip muscles become weaker, eye-tracking tech enables users with ALS and other neurodegenerative conditions to engage in daily tasks, including wheelchair operation, home automation and augmentative and alternative communication (AAC) with family, friends and health providers. 

One thing to keep in mind: for ALS patients, preserving communication is an essential part of care. If  patients can’t communicate with those around them – especially family, caregivers and doctors – they are lost. The ability to communicate and be understood improves and may lengthen life. Austin Nieto recounted how obtaining an AAC device broke through his father Augie’s crippling isolation. 

“With my dad’s mind unaffected, he basically became locked in his body, unable to communicate his thoughts, feelings, and basic needs,” shared Nieto. “My father was given a life expectancy of two to three years at the time of his diagnosis, and we are blessed that this year will be his sixteenth year with us since that day. I honestly believe this is a result of his EyeTech eye-tracking communication device.”

Artificial intelligence is making inroads into the field of augmentative communication.

Today’s AAC technology is easy to navigate, and the clinical “magic” is driven by the marriage of medicine and software. EyeTech technology uses machine learning and artificial intelligence to translate a user’s gaze into action, enhancing conversation and ability. While the technology’s control panel is a familiar, user-friendly tablet, its operating system draws from constant human interaction, cloud-based secure data and camera calibration. The more a user makes it part of their real-world situations, the faster the technology adapts to provide an intuitive and natural connection between users and those around them. EyeTech founder and chief science officer Robert Chappell says:

“Eye-tracking is uniquely capable of enriching lives and delivering a higher quality of life to people needing to access AAC technologies. Focusing on how the technology can be a facilitator of connection and not an arduous barrier for people with neurologic conditions is what is making innovators drive toward new software and software updates geared to advance the AAC and medical fields – it’s all about accessibility for people in need – accessible of use and reimbursement.”

ALS DIAGNOSIS SHOULD TRIGGER RAPID PAYER APPROVALS FOR SUPPORTIVE CARE

Accessibility is the rub. The urgent need to support or restore communication makes getting authorization for AAC devices among the most frustrating challenges people with ALS and their families face. Payers too often treat requests for communication technology as secondary to care. This is wrong: with ALS, communication IS care. 

The process is far from straightforward. People with ALS must first be evaluated by a speech language pathologist or other health professional to validate need based on cognition, speech quality and access ability. Then, device requests are sent to an AAC device manufacturer who must navigate the Medicare, Medicaid or private payer maze for reimbursement. Finally, the person with ALS must train to use the technology that will break their isolation and allow them to communicate again. Then they wait for approval to gain access. As their minutes and days tick away, they live in disease-imposed silence.

Service organizations like the Paralyzed Veterans of America (PVA) help U.S. veterans, who are twice as likely to develop ALS, navigate the Byzantine approval process. Others have to find their own path forward. Medicare often covers 80 per cent of device costs every five years, but ALS patients without supplemental Medicaid or private insurance need to pay out-of-pocket for copays. The average cost of a speech-generating device is $15,000, so people already devastated by ALS and the potential of being trapped in a silent world face the additional hurdles of income loss and mounting medical debt.

COMMUNICATION IS A LIFE LINK

For most with ALS, this is an unnecessary hardship, imposed by a system that appears to lack the humanity required to meet their most basic needs. Communication for people with ALS isn’t just a “nice- to-have” – it is an essential life link. While caregivers, providers and AAC innovators struggle through the approval and payment process and its roadblocks, people with ALS and other neurological conditions watch precious days, often weeks, slip by. 

Eye-tracking AAC technologies are proven; they support and sustain lives. There is little doubt of their ability to break the isolation of ALS patients and support those who live with other disabilities and neurological diseases like Parkinson’s and Alzheimer’s. The health system is fragmented with people with health urgencies needing to navigate its complexities. The technology works and makes a life-sustaining impact.  What will it take for the payer and approval system to heed the patient’s urgent call to action?

MND

Radio presenter raises thousands for MND as a tribute to her dad

Fern Balch lost her dad to MND a decade ago and now she is remembering him while raising money for the MND Association.

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Fern visited twelve different clubs in three days for the fundraiser

A radio presenter has raised over £5,000 for the MND Association and paid tribute to her late father by cycling over 100 miles to visit all of his former football clubs.

Fern Balch, who works for both the BBC and talkSPORT, took on the mammoth cycle last month to mark ten years since her dad, Tim, lost his battle with motor neurone disease (MND).

The ‘Tour de Tim’ featured twelve different teams across Dorset and Hampshire which he either managed or played for, all of which he had an impact on.

Despite being fit and busy all his life Tim was diagnosed with MND in March 2010, with its fast progression taking its toll on both him and his family.

Speaking to NR Times, Fern spoke about the impact the disease had.

“It was really strange when he actually started to get symptoms of MND,” she said. “He began to get unsteadiness on his feet, dizziness, he kept losing balance and then struggled to hold a pen and write.

“After his diagnosis he was just getting progressively worse every day, he couldn’t drive or walk anymore and he had to be put in a wheelchair.

“Eventually he couldn’t breathe by himself and he couldn’t eat by himself or go to the toilet.

“He was six foot two and very fit, so to see someone so strong degenerate every day was very difficult.”

Tim was then under constant care, with his wife quitting her job to help run his business and share the responsibilities with a 15-year-old Fern.

Their home was effectively changed into a hospital with hoists, chair lifts and toilet commodes all installed which completely changed the family’s lives.

Despite this Fern still has some amazing memories of her father and spoke about what a vibrant person he was.

“What’s been so lovely about the fundraiser is that I’ve heard so many stories about my dad which I wouldn’t have known,” she said. “Every single story just points to this character that he was.

“He was bubbly and he would light up a room. He was always asked if he was a celebrity of some kind because he carried himself in a certain way.

“He could talk for hours and hours and oozed confidence. He was just my best friend and we were really close, so to lose him at such a young age was really hard.”

Tim was immensely popular in the local footballing community and this is partly the reason why the fundraiser has been such a success.

When he first received his diagnosis 11 years ago knowledge and treatments around MND were a world away from where they are now.

The condition was a relatively unknown one then with Tim’s doctor at the time being baffled by his symptoms, initially diagnosing him with repetitive strain injury from his goalkeeping days.

He was the first case of MND his doctor had ever come across, but Fern says a lot of this has now changed thanks to the work of organisations like the MND Association.

This is one of the reasons why Fern undertook the challenge, to allow people to understand more about the condition.

“People have got in contact with me during the cycle saying they didn’t know MND was a problem and they didn’t understand how bad it could get.”

“Something that stands out to me is that when my dad was poorly, but he could still get out and about, we went shopping once and he stumbled onto his knees.

“After that someone walked by and said ‘oh I bet he’s drunk’ and we all heard it. He wasn’t at all, he was disabled.

“I hope that by people knowing the symptoms and what it can cause there might be a little bit more understanding if they see someone not being able to drink their drink properly at a coffee shop or lift their arm.

“Hopefully they might be a bit more compassionate and open to the fact that these people are poorly.”

The cycle was tough for Fern but she knew it was all worth it, with the event part of a number of efforts she has given to the organisation since her father’s passing.

“I really wanted to do something to honour the help that they gave to him. I know what they can provide and it’s gotten better year on year in the decade that my dad’s not been here.

“They’ve come up with the Voice Banking project in Dorset which has enabled people with motor neurone disease to record their own voice so that when they lose the ability to talk, they can still communicate with their family members.

“I’ve worked quite closely with them on the project over the last couple of years and it’s something I hold really dear to my heart.

“I want to see it improve and be rolled out across the whole country because everyone with MND deserves the right to talk and be able to communicate with their family members

“Anything I could do to contribute to research and contribute to another family like mine who have come through something so devastating.”

To find out more and donate, click here.

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MND

Hearts FC pay tribute to former captain through MND sponsorship

Hearts Football Club has been greatly affected by MND in recent years, with their recent choice of shirt sponsor reflecting that.

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Hearts football

Heart of Midlothian Football Club have committed their support to helping fund a cure for motor neurone disease (MND) by naming one of Scotland’s leading neuro charities as the men’s shirt sponsor for the upcoming season.

MND Scotland will have their logo placed on the front of each jersey for the 2021/21 campaign in a bid to raise both awareness about the condition and money for the charity.

The Edinburgh-based team are also using the deal to pay tribute to club legend and former captain Marius Žaliūkas, who tragically lost his battle with MND last year.

The average life expectancy for MND patients is just 18 months after diagnosis according to the charity, but the Lithunaian defender lived for the condition for nearly seven years.

Žaliūkas passed away aged 36 and was adored by fans, being part of the team that won the 2012 Scottish Cup.

Ann Parks, Director of Partnerships and Community at Hearts, spoke about what impact he had on the club.

“He had an iconic status at the club,” she said. “He was part of what many regard as the greatest ever Scottish Cup victory, which is forever written in the club’s history and folklore.

“He was much loved and it was absolutely shocking when we found out. His family wanted to keep it quiet so it was a tremendous shock when he died at such a young age.

“We are incredibly proud that we could choose MND Scotland, there could be no better tribute to our former captain.

“Equally it’s a really important message for supporters and the families of people affected by MND.”

Žaliūkas isn’t the only person who the partnership is dedicated to.

Robert Wilson was a former director at the club from 2011 and played a huge part in its restructuring after some serious financial difficulties.

He was diagnosed with MND that ended up being fatal and Ann spoke about how his work has helped change the team.

“Robert helped oversee the period that would eventually lead to full fan ownership of Hearts,” she said. “I had the pleasure of working with him for the first year where we were basically putting right all the things that were wrong with the club.

“I wanted to make the point that we are dedicating this to Robert who was fundamentally important in getting the club back on its feet.”

Hearts are also hoping to get its fan’s talking about MND as 200 people a year are diagnosed with the condition in Scotland, a number which seems to be growing.

“MND Scotland has been an absolute dream to work with,” Ann said. “They are really pragmatic about getting a deal which is good for them as well as being smart about the kind of things we can do to raise awareness.

“So many people have their lives touched by MND so the deal has brought on an enormous amount of support, not just from our supporters but from those of other clubs.

“The fan’s reaction has been tremendous, they’re incredibly proud and quite emotional that they can pay tribute to their heroes in this way.”

“Because we are so connected to the community and we have such a big supporter base, we can really amplify these messages to make people more aware and hopefully galvanise them to get involved.”

Iain McWhirter, interim chief executive at MND Scotland, also discussed the overall message of the campaign.

“We are very excited to be partnering with Heart of Midlothian FC this season,” he said. “This fantastic opportunity will honour the memory of former captain Marius Žaliūkas who passed away last year after a brave struggle against motor neurone disease.

“We hope this boost will enable us to speak to even more people about our cause and that the funds donated through sales will help us reach our ultimate goal of finding a cure.

“Until that day we will continue supporting families affected by MND in Scotland, so they do not have to go through the devastation alone.

This funding is another vital part of the campaign, with a lot of charities suffering in this regard because of the events of the last year.

The Jambos, as they are often known, will be donating a portion of the profits from every shirt sold to MND Scotland to help tackle this.

With no current cure for MND, Hearts are hoping some of the money raised will help fund research to end this problem.

They are particularly looking to see its impact locally, with some funds going towards projects at the Euan MacDonald Centre for MND Research at University of Edinburgh.

“I think this is a sponsorship model that other clubs can pick up,” Ann said. “I think that would make a major difference.

“It feels like a privilege in a way that we’ve got such an amazing charity in MND Scotland as the work they do is so important.

“We’re looking forward to what I’m sure is going to be a great relationship with them for the season ahead.” 

Dell Technologies are also involved with the deal as they have volunteered to cover the costs of the sponsorship for MND Scotland.

The computing giants have previously been involved with supporting other neuro charities in recent years, such as the MND Association of England, Wales and Northern Ireland.

Hearts have been working with Dell for a number of years now, having run a previous campaign to help young girls get into the technology and sports industries.

The football club also helped produce over 800 meals a day for those who needed them when the first lockdown hit the UK last March.

It is also a strong believer in responsible sponsorship, shown by this recent deal, further emphasising the sense of community the club has.

“The club is quite different from others,” Ann said. “We only want sponsorships and things that are supportive of the community.

“There would be no club without the community, so we do a huge amount of work on an educational and social support level.

“The deal with MND Scotland helps get the message across to supporters about the values that underpin the club.

“I think we’ve developed a great model of socially responsible football sponsorships.”

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MND

RAF veteran goes to great heights to fund MND research

Jumping out of a plane thousands of feet in the sky isn’t for everyone, but MND patient Lez Wainwright is putting this fear aside to give back to a cause that helped him.

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Lez and his wife Anita

A former RAF serviceman with motor neurone disease (MND) is ticking one thing off his bucket list to raise money for charity as he completes a skydive.

51-year-old Lez Wainwright was diagnosed with the condition in February and began thinking about all the things he wanted to do in life.

One of these is a skydive and even though he had served in the Royal Air Force (RAF) for nine years, it is something he has never done before.

“After my diagnosis I decided to do a bucket list,” he said. “A skydive was one of the things I’ve always wanted to do.

“Originally I was too scared but I thought now is my chance to get it out the way with and get it done.”

Not only will Lez get the satisfaction of being able to tick this off his list, but it will also be used to help others by raising funds for the MND Association.

His two step daughters, Alice and Charlotte Parker, will also be taking part as they look to support the charity that was there for Lez.

He said the charity has been ‘very helpful’ since his diagnosis, being a contact to help him any time of day and even setting up a speech monitor for when he needs it.

Although Lez was diagnosed earlier this year he admitted he had been noticing symptoms from as early as 2019.

The first signs came when he began to rapidly lose weight. Then his legs began to give way which resulted in a number of long hospital visits for him last year.

Once he received his diagnosis he found himself stunned.

“I didn’t really know much about MND in the beginning,” Lez said. “My wife did, but it was a shock.

“When I was told it was a life changing illness it really shocked me and I became quite scared of it.”

Now Lez is looking to help others in a similar position to him by raising as much money as possible.

Initially the target was to collect £680, helping cover the cost of the skydive with the rest of the money going to the MND Association.

However the coverage his efforts have received mixed with the generosity of others means they have raised nearly £1800 so far, with Lez thrilled with how much it has taken off.

Although this extra funding is key he said that raising awareness about the condition is just as important.

“With awareness can come funding as it is all rolled into one. Currently there is not a lot of awareness about MND.

“It is getting better but funding is desperately needed and if I can raise even a single penny to help find a cure then I’m happy with that.”

The rest of Lez’s family are also chipping in with their own fundraising efforts, with his stepson-in-law competing in the Great North Run later this year for the same charity.

He spoke about how happy he was to see the efforts go ‘viral’ after a number of his friends also committed to helping raise money through their own charity runs.

As for the rest of Lez’s bucket list he is looking much closer to home, saying what is top of that for him now is spending quality time with his family.

To find out more and donate to Lez, click here.

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