Terje has been living with locked-in syndrome (LIS) for 13 years and is unable to control his body on his own. As a result, he depends on assistive devices like Innowalk to stay physically active every day.
Terje has Locked-In-Syndrome
Terje is 42 years old and lives in his own apartment, which is adapted to his needs as a wheelchair user. In 2011, when he was 29 years old, he suffered a brain haemorrhage and was in a coma for 6 months. When Terje woke up, he could hear, see, and think, but he could not move or control his body. Terje had developed locked-in syndrome (LIS), which is a rare condition.
His local authority provided a team of personal care assistants to help Terje 24/7, which allows him to live independently. Terje uses an eye-pointing board to communicate, an also has an eye-operated computer for communication, but he often chooses to use the eye-pointing board because it is easy to carry and quick to use. All his care assistants have also become proficient in using this tool.
What is locked-in syndrome?
Locked-in syndrome (LIS) is a rare and severe neurological condition where a person is completely paralysed in all voluntary muscles, except for a few eye muscles. The person is aware of their surroundings but cannot move or speak. Sight, hearing, and the ability to think are usually intact.
The condition usually occurs due to damage to the brainstem, which can be caused by a brain haemorrhage, blood clot, traumatic brain injury, tumour or seizure. Patients with locked-in syndrome can often communicate by moving their eyes up and down or by blinking. Ref: The Brain Charity
Activity is Key to Good Quality of Life
Before the brain haemorrhage, Terje was an active person who liked to stay in shape. He regularly took part in football, snowboarding, kickboxing, and strength training. He describes himself as having "ants in his pants" and always liked to be on the move. He also appreciated the outdoors and loved camping.
Today, Terje is tells us he has an inner motivation to be active and that he still has "ants in his pants". It gets him up and out of bed every day and contributes to an improved quality of life.
Every morning starts with mobilisation of his arms and legs in bed. Terje's assistants have been trained by the physiotherapist on how to move his joints appropriately.
After morning care and breakfast, Terje is transferred to the Innowalk where he completes his first activity session of at least 30 minutes. Later in the day, he uses an arm and leg trainer while sat in his wheelchair for up to an hour.
Innowalk as an Assistive Device
In 2016, Terje tried Innowalk for the first time, and when he moved into his own apartment in 2018, he was granted Innowalk for daily use.
Initially, during his Innowalk session, he preferred to have the table in front of him, which made him feel more secure. Gradually, he transitioned to using the arm handles to move both his arms and legs simultaneously in a standing position. Terje has reduced hand function so he uses gloves to grip the handles.
Innowalk has been crucial for Terje to stay physically active every day in a standing position. He describes it as a wonderful feeling to stretch his body to its full length every day and move in a standing position. Nothing prevents him from getting into Innowalk every day. Even when he is sick, he has a strong need to get up and move. Reidun, one of Terje's assistants, says: "If Terje cannot get into Innowalk, he is seriously ill. I don't think I can count more than two days when he hasn't used Innowalk."
Physical activity in a standing position positively affects his quality of life, and he also experiences several physiological benefits from regularly moving his body. Among other things, as a wheelchair user he experiences a lot of mucus build up in his chest, and moving his body in an upright position helps mobilise and clear the mucus.
Innowalk 2.0
In 2024, Terje applied for funding for a new Innowalk 2.0. For Terje, having the new version of Innowalk approved was desirable, because it has:
- Foldable leg supports
- More comfortable padding at the support points
These new features were important for Terje. The foldable leg supports make it easier to transfer him in and out of the Innowalk with a hoist, without his legs clashing with the supports. This also reduces the strain on those assisting him, as they no longer have to lift his legs during the hoist transfer.
Since Terje uses the Innowalk a lot and does not have any independent muscle activity in his body, it is important that the support points are comfortable. The new support cushions have been designed to be more comfortable both on the legs and around the chest.
Read more: All you need to know about the latest Innowalk version 2.0!
Mental and Physical Strength
Terje has unique willpower and zest for life. He perseveres with physical activity every day and is focused on improving his motor function as much as possible. He has always had a dream of being able to stand up from his wheelchair, and last August, he finally succeeded.
Terje’s physiotherapist has worked with him specifically towards this goal. They set up a grab handle in his bedroom, which was later replaced with a ladder wall, and here they trained for Terje to be able to stand up. The task consisted of several sub-goals, and in the end, he achieved it, which was an extremely proud moment for all involved. Now, the goal is to maintain this function, and it requires both mental and physical strength to achieve that. 
Photo: private.
Fresh Air and Football
Terje has always had a passion for the outdoors and still loves spending time in nature. He lives close to a beautiful forest area, with numerous trails that he can navigate in his electric wheelchair. Additionally, he has a love for football and enjoys watching the matches of Lillestrøm Sportsklubb, a local Norwegian football team. "At the moment, they're not performing well, but if you flip the standings upside down, they're on top," Terje comments with a sparkle in his eye.
