Hauke is an 18-year-old young man. Next summer, he will move from school to a daily activity center. To maintain his independence with the walking aid Xplore for as long as possible, he and his therapist practice daily getting in and out with as little assistance as possible.
We spoke with Ulrike Hirsch, chief physiotherapist at Hirtenweg School in Hamburg-Othmarschen. The school's support focuses on the physical and motor development of the children. They take care of children from first to eleventh grade.
Ulrike has been taking care of Hauke there since first grade. Hauke has now been using Xplore as a walking aid for nine months. Currently, the two of them are intensively practicing getting in and out with Xplore. The goal is to use as few aids as possible so that Hauke can maintain his independence and his joy of running even after he leaves school. In an interview, Ulrike tells us about the advantages of Xplore for Hauke.
Ulrike, could you briefly tell us something about Hauke and his situation?
"Hauke turned 18 in October and will leave school next summer. He will then transition to a daily activity center. He is currently doing an internship to get to know the new environment and the new staff. Hauke has multiple disabilities and primarily moves in a wheelchair, but supported running in the Xplore walking aid makes him very happy," says Ulrike about Hauke's situation.
How did you first hear about Xplore?
"We have been collaborating with Made for Movement for a long time, so I am naturally familiar with Xplore as an aid. I have also known Hauke since he started his schooling. Initially, he was very well equipped with the NF-Walker for assistance with walking and standing, and he enjoyed running with its help. When the advisor from Made for Movement told us that Xplore is now available in a new size that could also fit Hauke, we immediately wanted to try it out. Hauke is about 168 cm tall and has had surgery on both hips and also on his spine. He has a rod in his spine and therefore cannot twist his upper body or bend his hips much. Nevertheless, he can assist in getting out of the wheelchair and even take a few steps. I myself am only 160 centimeters tall. Therefore, it is always a challenge for me to transfer this tall, long boy to the walking aid, but seeing the joy he shows when he can assist in the transfer to the walking aid makes me happy. But I am pleased because it is very unusual for us that children of this age and size can still run so well," Ulrike says enthusiastically. "Therefore, I would like to keep him with us for as long as possible, and that is why we practice so intensively so that this will also work well after school in the daily activity center with the new staff," she explains her long-term goal for Hauke to us.
What benefits does Xplore have for Hauke?
The advantages are very clear for Ulrike: "Getting into the Xplore walking aid is easier for Hauke than getting into the NF-Walker. He accepted the aid immediately.
The effects on the children's bodies of being able to stand and walk are also significant; contractures decrease, digestion is stimulated, and participation is completely different, which has a positive cognitive impact - to name just a few.'"
How long has Hauke been using Xplore?
Hauke has had Xplore since the end of January 2021 - so for almost nine months. Especially recently, he has made tremendous progress, and Hauke has also developed a lot. This is also partly due to Corona. Since the beginning of August, the lockdown has ended, and he was able to return to school and accept all offers. It has moved him forward again. The recovery period, which children also need, did him good, and after these months, it was a kind of restart," Ulrike tells us.
What treatment methods are you using for training, and what is your approach moving forward?
"In our school, where our general goal is to achieve the highest possible independence in daily life, we implement treatments based on the Bobath concept."
My current goal is the transfer from the wheelchair, then being able to stand on one leg, and finally placing one leg over the Xplore chassis. I always practice this with Xplore, and for me, the journey is the goal – it's not about quickly putting him into the aid. Instead, it's about what Hauke can do. How he can assist, what kind of self-activity he needs: namely, pushing himself up from the wheelchair seat, then raising one leg, and then lowering it over the chassis of Xplore. For me, all the steps required for Hauke to enter the walking aid with as little assistance as possible are important.
This is currently the primary goal of the exercises and treatment. At the same time, we also practice how he should approach the aid for standing and back as independently as possible. Everything that is important for his daily life. The point is that even people who don't know him well should be able to do all this with him. We repeat these exercises over and over again - Hauke needs about 5,000 repetitions to learn them. Once he has internalized the individual steps, even people who still need to be instructed in advance can work with Hauke.
Hauke also has his own mind, if he likes to do something, he helps very well. Because he enjoys running a lot, he helps here. It's completely different in the morning after he gets up, when he has to help dress, which he doesn't like so much, so he doesn't help then," Ulrike laughs.
How do you approach the training sessions?
So far, with the help of two people, Hauke has risen from the wheelchair forward at a horizontal bar, directly on a block, so that he was already a little higher. Then we secured Hauke and placed Xplore behind him. Now two large boxes were placed to the right and left of the chassis, so that with the help of an accompanying person he could move his legs backward to the left and right, and then sit on the seat of Xplore. Hauke has always held onto the horizontal bar during this process.
We have already dismantled this – today Hauke, with my assistance, rises from the wheelchair, which stands next to Xplore. He is held by me and supported by the accompanying person, and he places one leg over the chassis onto a small box. Then he pushes himself up with this leg backward toward Xplore's seat. In this way, we were able to minimize the aids to a minimum. However, a second person for support remains a necessary requirement for the transfer.
I also guide Hauke to a good standing position – we have both been tried and tested for 12 years now, and I also have some experience," laughs Ulrike.
"But of course, not everyone can do this. One must understand Hauke's specific requirements and also have another person to support him in transferring to the walking aid, but now there is no longer a need to lift him, and that is a great relief for all involved.
What assistive devices did Hauke use before Xplore, and does he still use other aids?
"Before Xplore, as mentioned earlier, Hauke always used an NF-Walker. He also has a wheelchair, a standing frame, and orthoses. He commutes between school and home in a wheelchair. He can also maneuver the wheelchair by himself - but not for long distances, as Hauke easily gets distracted," explains Ulrike.
What were the main obstacles Hauke faced before starting to use Xplore?
Ulrike explains that Hauke has always had a severe scoliosis, even as a baby, and he has always worn a brace. After reaching adulthood, his entire spine, including the lumbar region, was surgically fused. Managing this was a significant challenge for Hauke. Initially, he had to understand how to interact differently. That's why everyone at the school is very pleased that he can still walk so well.
With Xplore, Hauke can move independently, swiftly, and with great joy in an upright position.
What is your recommendation for the everyday use of Xplore?
"At present, Hauke uses Xplore 3-4 times a week, for about 40 to 50 minutes each time. It would be good if it continued like this, even in his daily activities."
Here at the institution, there are long, smooth corridors where he can run. But when we go out to the schoolyard, where it's a bit uneven, it becomes more challenging. The parents would also like to use Xplore at home. Unfortunately, they don't have enough space for him to run very far there. For the future, it remains to be seen if at the daily activity center, where he will go, there will still be opportunities for him to use Xplore regularly. However, for such a big boy, Xplore, of course, also has larger dimensions, and the device must also be stored," says Ulrike about possible obstacles in the future.
What does Hauke enjoy the most about using Xplore?
At school, there are different games and tasks for Hauke so that he starts with a targeted mission. He enjoys playing hide-and-seek but wants to search. Or he gets a task, such as collecting something. For this purpose, Velcro strips are attached to the corridor walls, where various items can be attached. 'Hauke loves cables, for example, which is also one of the few words he can pronounce. He is interested in all the cables in the world,' smiles Ulrike. 'So we attach cables to different Velcro points, and Hauke then goes to collect and sort them. So, he doesn't just run, but with a purpose. He either has a path to follow, for example, to the elevator and then goes up with it, or he has the task of collecting the cables, or we play hide-and-seek – these are his favorite subjects. We ask him what he would like to do, and then it starts. When we give him a task, we are always present because we cannot leave him unattended.'
How can Hauke benefit from the long-term use of Xplore?
"With such a large, young man, it would just be nice if we could maintain his ability to walk and stand for his entire life, for as long as possible. And I truly hope that this joy and ability will remain for him. Hauke is a cheerful boy, and when I ask him if he would like to run, he almost jumps out of his wheelchair with joy and squeals with delight, which is very impressive and shows how much he enjoys doing this. Running is truly his greatest hobby, and I would be so happy if he could still do this in 20 years," Ulrike becomes a little nostalgic as she thinks about the future.
"It is so important to maintain the ability to walk and stand for as long as possible because the moment children can no longer do so, contractures increase. Additionally, it's a way to maintain independence. Children are interested in being involved. They want to be there and also do what they can do and what the other youths are doing. These are also the most important things they wish for. It's also particularly important to be on equal footing with the others. So they have a completely different perception of their surroundings, and even the children are perceived differently."
What convinced you about the walking aid Xplore?
"For me, Xplore is simply excellent and well thought out, and severely affected children can thereby become mobile and independent, which I think is absolutely fantastic. I am truly enthusiastic about the walking aids from Made for Movement. I also think the NF-Walker is fantastic.
I also think it's great that even older children can now be transferred to devices with good technology; previously, they all had to be lifted in," says Ulrike about the further development of the devices.
What are your wishes for Hauke in the future?
"When I think about his future, he will continue to have physiotherapy, through physiotherapists who come from practice to the daily activities and work with the people there. With good guidance, I am sure that Hauke can continue to use Xplore because it is his greatest joy, and I hope he will continue to have this joy for a long time to come."
"I feel that Ulrike's farewell from Hauke next summer will not be easy."
Ulrike, thank you very much for the interview.
