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Harley's StrideOn Story
- Vanessa purchased the StrideOn kneewalker for her son, Harley age 27, ahead of his Symes amputation in July 2018. Here is Vanessa telling Harley’s story.
I purchased the StrideOn kneewalker for my son, Harley age 27, ahead of his Symes amputation in July 2018.Harley had an elective amputation of his right foot due to severe deformity, pain and discomfort from talipes (club foot) which is a congenital birth defect. Despite several corrective surgeries over the years (his first was at just 4 months old) and adaptive footwear, his mobility was becoming compromised and he was facing a future in a wheelchair as he got older.
In 2015 he was referred to a specialist talipes consultant in Oswestry who did not hesitate in recommending an amputation as the best solution to Harley’s issues. In his words it would be “doing something cruel, to achieve something great!”
It did indeed seem “cruel” and it was quite a shock to be told this as an amputation was something I had never expected we would have to consider. Harley was adamant he did not want his foot “cut off”. But six months later, out of the blue, he started talking about it and expressed his wish that he wanted to have an amputation.
We started the process with the orthopaedic consultancy team who were initially reluctant to make a referral to the surgeon in the light of Harley’s learning disabilities, Autism, Tourette’s and more. However, I persisted and we met with the surgeon in Salisbury.
Harley was determined it was what he wanted even more so when the surgeon suggested that rather than him having a below knee amputation as was being suggested, he have the less common Symes amputation whereby the foot would be removed through the ankle and the heel reattached to the end of the residual limb to create a limb on which he could weightbear, ultimately facilitating limited mobility indoors without walking aids and without the need for extensive home adaptations.
Harley was excited for the surgery and in July 2018 it went ahead. He made a speedy recovery and was weight bearing after 8 weeks and able to walk short distances indoors on the residual limb by 10 weeks.
In October 2018 he got his first prosthetic foot and he has been under constant prosthetic management since.
Although he had the StrideOn available, his post operative recovery was swift and it was something he wasn’t needing to use. During the first 8 weeks after his surgery it couldn’t be used as he was non weight bearing and the leg had to be elevated at all times. The swift and successful transition to a prosthesis meant the StrideOn at that time became obsolete. But with lifelong mobility issues I considered it was something we should keep just in case.
Despite the prosthesis, it was apparent that distance walking was not sustainable so mobility aids have been a mainstay for Harley since his surgery. However, the nature of his mobility issues and having access to a range of different mobility options have meant that neither a wheelchair nor mobility scooter have been on his list of mobility aids to use. He has consistently used an Alinker walking bike since June 2019 which has kept him fit and active despite his mobility limitations.
The important difference post amputation is that Harley does not have the same persistent pain he had before. His posture and gait have significantly improved and we have been able to eliminate the scoliosis that was becoming an increasing risk. The pain he has had post surgery has been from the prosthesis and this can quickly be eliminated by removing it. But, without a prosthesis Harley cannot walk outdoors so access to suitable mobility aids is essential.
Over the last 4 years Harley has consistently experienced discomfort with the prosthesis and it has been adapted several times to try and remedy this but to no avail.
One day in July this year, Harley couldn’t put the prosthesis on. Upo. closer inspection it was clear the socket had distorted. We had a spare socket from a water leg and tried that but within 5 minutes he was in agonising pain. Something was seriously wrong.
With a prosthetics review a few weeks later we resigned to leave the prosthesis off completely. Aside from the consistent discomfort from wearing a prosthesis, the skin integrity of the residual limb was compromised due to the build up of sweat as it would become very hot while Harley was mobilising.It was only after leaving the prosthetic off that I noticed the residual limb was swelling during the day. It became apparent that the discomfort Harley had been experiencing all this time was not just due to the heat in the socket but due to the swelling which meant the snug fitting socket was becoming quickly and consistently uncomfortable throughout the day. Only when it was removed did Harley get relief.
Since mid July Harley has been mobilising indoors AND outdoors without a prosthetic foot. The prosthetics team are reviewing things but with no viable solution at this time, Harley is without a prosthesis.
This is where his StrideOn kneewalker has come into play. I had forgotten we still had it until I cleared out my shed one day and found it. I was elated. We were struggling somewhat. His Alinker walking bike has been challenging for him to use but he has perfected his ability to scoot with it. The problem is, with nothing to protect his residual limb bar a sock, he has been putting it down on the ground for balance which has not been ideal. Furthermore, he has at times been unstable particularly on uneven pavements.
He has been using a knee crutch for short transfers which has been very useful but has not been suitable for sustained walking. It is, however, part of his essential “mobility kit” along with the Alinker walking bike.
The StrideOn kneewalker has become a third mainstay mobility aid for his daily activities. It has provided him with a different method of keeping actively mobile despite only have one foot. He has perfected his posture while using it meaning that after some initial difficulties, he is able to move more freely and at ease.
Posture on the StrideOn kneewalker I have found to be really important both for safety and comfort. He is now far more relaxed when using it.
Significantly there are two key benefits I have observed since we have increased it’s use.
1. On his walking bike Harley tends to lean to his left as he distributes his weight on the left leg to scoot and consequently has a significant left shoulder drop. On the StrideOn he is shifting his weight to his right side because he is weight bearing on his right leg to scoot forward and this means the left shoulder drop is noticeably reduced. This is a distinct postural advantage and will reduce the risk of scoliosis that he already has a history of.
2. With the StrideOn he does not need to put his residual limb on the ground at all while mobilising to balance himself. He is completely balanced on the StrideOn and can easily adjust his balance accordingly without causing damage to the integrity of the skin on the residual limb. This means that any further trauma is significantly reduced.
Harley is now so comfortable with his StrideOn that we can use it for longer distances than when he first started using it and he can comfortably mobilise around a high street and through shops.
He is using a different set of muscles and using his body in a different way. Using it in moderation and in conjunction with his exisring available mobility aids, means that Harley can remain consistently active and consistently independently mobile. Significantly he can remain consistently at eye level with people which is an important part of his social engagement and essential in his holistic care needs.
He enjoys riding his StrideOn and it makes for a smooth ride as we go about our daily activities.
Additionally it gives him a choice about how he wants to move depending on how he feels day to day. It’s given him more freedom while also maintaining comfort. He has quickly adapted and become very confident in using it. Furthermore the advantage of the five wheels means it has a very tight turning circle which is particularly useful in smaller shops. This improves accessibility.
Although it is not designed to be sat on Harley has taken to sitting on it to stop and rest which is the advantage of having the wide knee rest. This can be useful.
As Harley builds up his strength and his muscles get used to working in new and different ways I can see him wanting to use his SrideOn more and more. It is a quick, convenient and easy way for him to move around while he is without his prosthetic foot. He can mobilise comfortably and safely.
Having access to several mobility aids is important for anyone with mobility issues and Harley’s StrideOn is now firmly on the list of his ones to use. Additionally maintaining physical health requires maintaining a level of physical activity which can be difficult for people with mobility challenges. Having a mobility aid that keeps you active is a contributory factor in maintaining a healthy lifestyle. The StrideOn requires physical effort to use which is advantageous in helping people keep active.
Since Harley has had his amputation in the words of the specialist consultant who recommended it, he has achieved “something great”! In fact he has achieved so many great things that were unimaginable before and there is really no stopping him!
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- •https://www.strideon.co.uk/product/StrideOn-Knee-Walker