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Patient reports

Suddenly, everything is different! Things that were easy yesterday suddenly become obstacles in everyday life. Affected individuals report here on what they have experienced, their satisfaction with treatment solutions and how they deal with their affected mobility.

 

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Lida L.

At the age of 33 in January 1998 and a single mother of two young children, I suffered a devastating stroke. Following a five month hospital stay and after extensive physiotherapy I returned home but struggled to remain independent and found it difficult to get used to my new life. I was forced to leave my job as a property lawyer and my parents, who had emigrated to Cyprus, had to return to England to help me look after my children.

 

Following extensive research into new technologies, in December 2011 at the age of 47, I was invited by my consultant at BMI the Blackheath Hospital to trial a new implantable ActiGait FES® implant device. I was so excited – it was the answer I had been waiting for.

After having the implant surgically implanted into my thigh I immediately got used to ActiGait®. It takes a couple of seconds to turn on and since the operation I can walk unaided and effortlessly and have no pain whatsoever. It’s a million times better than anything I’ve had before, and has become a part of my life. Before ActiGait, I had to wear baggy clothes and wasn’t able to wear dresses or skirts due to the embarrassment of visible wires and electrodes on my leg from my old drop foot solution, which made me feel unfeminine. My biggest wish is to help other sufferers to the stage I’m now at, living an independent life. Now I have the confidence to go out, dress the way I want and I feel normal again. For the first time in years I can look forward to the summer and wear dresses and sandals again.

Zara R.

On 4 April 2004 my life changed forever due to an horrific road traffic accident caused by a nail in my tyre. My parents were told to prepare for the worst due to a tear in an aorta by my heart and traumatic Brain surgery and numerous other life threatening injuries. I spent 2 months in a coma on a life support then another 7 months in rehabilitation. Whilst there I had to learn to swallow, eat, walk, talk, dress, wash myself and even learn to use a toilet again.

 

By 2007 I felt ready to try and carry on again with my education and dream of teaching children with special needs or as I call them unfortunately blessed. I obtained a NVQ 2, won 2 top awards completing a Teaching Foundation degree in Glyndour University and work voluntarily at a special school. Unfortunately as my walking is affected by balance problems [ataxia] and recurrent tiredness since 2008 I have previously been using surface stimulation but stopped a few months ago due to its limitations.

Having read extensively about ActiGait, and thanks to my close family I received a surgical implant at the beginning of July which was then successfully activated towards the end of the month with a good outcome. I am now able to regularly walk to the gym [half a mile each way] and use the running machine plus I have also qualified to train with the Welsh disability cycling team for the Paralympic Games.

To be nominated to become a Paralympic Torch Bearer, and being part of a team carrying the Paralympic flame was extremely inspiring and it is this inspiration I wish to share with others.

Marcus – MyGait: "Like a part of me"

Marcus (44), an active sportsman and avid traveller who is also fully committed to his work, lives life with both feet firmly on the ground. He was diagnosed with multiple sclerosis 14 years ago. Since summer 2013, he has been using the MyGait surface stimulator from Ottobock, which was developed specifically for the fitting of patients with dorsiflexor weakness.

Marcus was in his early thirties when he was diagnosed with the illness. He worked for a prestigious international business consulting firm and ran marathons and skied in his spare time. He had already spent a number of years abroad as a student. "The diagnosis was a shock, of course. At first, I was fortunate to be able to continue living my life almost as I had before. The MS did limit my mobility, but medication could compensate the effects of the illness quite well." 

That changed in the spring of 2009, when he experienced a serious episode while at a conference in Florida. Due to an inflammation of the spinal cord in the area of his cervical spine, Marcus was no longer able to lift his right leg properly. The inflammation affected the peroneal nerve, which lifts the foot. "Up until this point my mobility was practically unlimited. After the episode, my radius of activity grew smaller and smaller." When the sciatic nerve in Marcus's right leg was subsequently affected as well and it became increasingly difficult for him to lift his knee when walking, he decided to seek treatment at a rehabilitation centre. There he was introduced to a variety of orthotic fittings which, however, only helped a limited amount. In the spring of 2013, he learned from his neurologist that electrostimulation could achieve good results in patients with weak dorsiflexion.

Marcus contacted the medical supply shop where he had already been a customer for a number of years. It was after that that his orthotist told him about the MyGait surface stimulator from Ottobock. Under certain physical conditions, the MyGait uses functional electrical stimulation (FES) to lift the foot at just the right time in the gait cycle. A heel switch worn on the foot sends a wireless signal to the stimulator, which is secured with a cuff below the knee. The stimulator has two channels. One channel is used to lift the foot, while the other can be used for various purposes such as knee flexion and extension or, as in Marcus's case, to support hip stability. 

Today, Marcus works in informatics/IT at a large international logistics firm. He travels frequently – both for work and for leisure. In his free time he goes to the gym and takes long walks. "MyGait is a part of my everyday life now. It's part of me. I put it on in the morning, go to work, I am out and about for up to 12 hours and only take it off in the evening."