Our customers’ thoughts

Senja Norha is a retired police officer and a service dog user. Senja has suffered from back and mobility problems all her life. With an undefined EDS diagnosis and a degenerative spine disorder, Senja has become acquainted with Lymed pressure garments since 2013. Senja uses Lymed Sense long-sleeved shirt, long-legged pants and a sleeve glove.

438316961_43974“My life with pain has begun when I was around ten years old. I remember experiencing constant problems in my back area. I exercised a lot and did all kinds of sports, but at age 14 I had to cut off my first sport because of pain, gymnastics. All my teenage years and adult life I have tried to keep myself moving as much as possible; I did freestyle, downhill skiing, water skiing and trampoline gymnastics.

Pain was present all the time. Despite of it, I graduated into a profession. I got through the fitness tests and I became a police officer. I noticed that I was on sick leave a lot because of my back: I got a bag of basic painkillers and they said to me “back problems are what they are.” I often had to go to the emergency room to get injections to ease my pain. Soon I found myself working reduced-time. I took this as a possibility to finally rehabilitate myself fully for working life.

In 2006, everything stopped for me. I was in great physical shape because of my part-time working schedule, but suddenly I could not get out of the bed anymore. I went to see the doctor and received very little – even if any – help. I was extremely frustrated: I even asked for a mental health assessment from my doctor. I was convinced that since no one found a physical reason for my pain, it must be psychological.

They did not send me to evaluation, but they finally sent me to a physiatrist who found serious degeneration in my back and ossification of vertebrae. I was diagnosed with degenerative spine disorder and hypermobility. I always thought that the hypermobility was normal, and everyone has it. Professionals questioned whether I could even rehabilitate myself back to work. I wanted to work, so I committed to it fully.

My health, however, deteriorated: I could not hold my grip, I had difficulties lifting and carrying. I got frustrated easily. I realized that in the future I will probably need a service dog to support my daily living. I had just acquired Aino, a golden retriever, as a non-working dog. With the encouragement of my doctors, I started to train Aino to be a service dog for myself. Years later, I was with Aino at a service dog event and I was randomly asked when I received my diagnosis of EDS. I was blown away and asked them to explain it to me in detail. What on earth was this?

I started to read more about it, and even though I did not have a confirmed EDS diagnosis, my symptoms matched – apart from the genetic inheritance. This was the start of my occupational therapy and physiotherapy, and we tried to figure out what kind of aids I could use to help my daily living. Later that year, my father called me complaining about the same types of hypermobility symptoms as I already had been diagnosed with. Maybe this is genetically inherited after all..? Nonetheless, I had been using pain clinic services for many years now and I did not have any suitable painkillers to use. The next step in pain management would have been opioids, but I did not want to use them because of my profession. In addition to this, my body could not take the pain medication any longer.

I was attending Assistive Technology Fair in 2013 when I became acquainted with pressure garments. I started asking around how I could get my hands on them. I immediately realized that external pressure could help me survive every day, especially with my problematic hypermobility. I already used aids and assistive technologies where ever I could.

That same year I got my first pressure garments. I was amazed – I felt one with myself, and I did not need to waste energy to “control my body”, so to say. It felt like Christmas! My garments were custom-made to fit my body’s dimensions and my muscles – standard sized products did not fit me. It took some time to get used to the products, but soon I noticed that I was able to do things I had already discarded as impossible for me to do. I was able to go for a walk! During the night the garments recovered me from my daily activities, prevented dislocations and luxations and during the day I felt almost painless. I was active! Finally, because I wore the garments all the time, I was granted another set of them. This made washing and wearing easier. My garments helped me more than e.g. resting splints, with which I could not sleep well.

At this stage I was already put on time-limited retirement, wanting to return to my profession I loved. I was hopeful, because my rehabilitation seemed to be successful. Unfortunately, the degeneration progressed and got worse, so this was no longer possible for me. I was deemed disabled, unable to return to work, in 2015.

It has been a long and difficult journey of many years, I’ve fought many fights over my rights to feel better and get well. With the use of pressure garments, my ability to function has improved considerably and my balance is so much stronger nowadays. I use pressure garments to manage my everyday life.

I struggle each year to get reimbursement for my pressure garments. Care paths are complicated and situations change constantly. However, one thing is certain: I need my pressure garments for my daily living and to be a functional, active person.”

Our client Mr Olli Salpakoski has cerebral palsy (CP). Below he describes his experiences using Lymed garments and the effects they have in his life.

 

IMG_0389I am a 40 year old adventurer and sports enthusiast with CP. My hobbies include power lifting, climbing and paddling, not forgetting bike hiking. I am also the national champion in arm wrestling.

My life’s goal is to function as independently as possible and do all the things I want. Regardless of my CP, I’ve been a spearhead (and a crash test dummy) in most of my endeavors in the world of adventure sports.

Within months the garment has changed my life completely. The pain in my legs is gone and my spinal disc herniation does not bother me. I have less spasticity and because of that my performance levels and recovery speed is better. Lymed garment protects me from bruises when climbing and hiking, especially when I fall down a lot. I am faster in my movements because the garment brings an ease into my walk.

By trade I am a registered nurse in substance abuse and mental health housing unit and I wear my garments while working, too. I am on my feet at work and I have to lift things in difficult positions. The garments help me do better and keep me feeling safe. Garments are elastic and barely visible.

The garments help my psychological well-being, because I am much more upright when wearing it. My colleagues and friends have said that I stand much straighter and I am more convincing in my job, where body language is very important.

For me it is crucial that I wear it every day. It requires commitment, because it does not help by being in the closet. Sometimes, when the garment corrects my bad posture and position, it causes some pain in my weaker side and spastic shoulder and leg.

My physiotherapist has noticed the benefits of the garment, too. For example, nowadays my muscle tone is much improved.

 

Read more: Lymed supports CP adventurer Olli’s mountain climbing

 


Our client, Mr Marko Kuronen was born with mild cerebral palsy and retinal degeneration (the narrowness of the field of view is under 5% and he is nyctalopic). Below he depicts his experiences using the LYMED Sense™ supporting garment and its effects on his body and entire life.

The garment in question affects the way I control my body. In addition to that the suit helps me perceive the parts of my body completely different. The suit allows me to add functionality in my life. Because of the possibility for added exercise and new sensory feelings my movement has become more controlled and improved as well as perkier.

The effects on my everyday life:

The garment helps me positively perceive muscle groups in all parts of my body. The suit gives me information that I have different muscle groups that I can use e.g. in moving my body. This new found muscle awareness comes from the pressure the suit provides.

New sensations include e.g. the possibility to extend my toes whilst wearing shoes. The extension of the toes sends a message to my brains that I have the possibility to use my entire instep of foot. Without the suit I cannot feel the extension in my toes and the curl up when I walk. This is very difficult. Extending the toes help me move and has a positive effect on the development of balance.

I was born with a mild case of CP which manifests as a division of strength – the left side of my body is considerably healthier and stronger than my right side. The suit helps to balance this difference. The right side of my body is weaker from my axilla to the toes and the right leg is three millimeters shorter that the left one. When I move with the suit on it cognitively aids the weaker side’s muscle groups and I can make more use of them. The benefit of the suit is best seen in my legs: when I’m suited I can easily lower my right heel to the floor (and against my therapeutic sole in my shoe). Without the suit I am not able to do this at all. The ability to lower my heel affects my balance immensely. My balance is better and my movement is more controlled. Without the suit I have to concentrate on getting the heel to lower itself and this slows down and severs my walking. The slow, imbalanced movement adds to my muscle spasticity. When I’m wearing my suit the spastic movements are fewer and far between, even visually seem to stay hidden a bit.

Because I can now lower my right heel I have now trained to use my right leg differently than before. The leg used to drag under me when I walked but now the suit has given me a chance to correct its position, directly to the front. The corrected stance adds to my balance and I now have a more upright walk. This affects my walk making it more alert and happy, faster and the overall enjoyment of moving.

By raising the waist on my trousers we have achieved the support needed in my lower back and pelvis when sitting and moving. The higher waistline, in addition to this, helps me extend my back and be more in an upright position. When the upper part of my body is in a better position I am able to move easier and I’m taller now! The position of my upper body affects the trajectories of my movements over time. Without the suit the support is gone and my posture goes back to the position the CP has given me – by body collapses and the extensions are no longer.

The suit affects the palm of my hand as well as the fingers. I can immediately feel it when I put it on. The pressure lets me know that I have straightened fingers that I can use easily. It becomes easier to write and type. The diminished stiffness relieves the tension in my shoulder and neck area. With time I hope that the suit will bring me better dexterity with my fingers. The suit has an effect on my arm muscles and muscle groups; I can feel some of them better. The use of hands and the control of the right shoulder are easier. The shoulder raises and feels sturdier with the suit, like it magically grew new muscles and posture overnight. Without the suit my right shoulder is collapsed and I do not feel the muscles needed to move it. When I move with the suit on my palms are extended (even my fingers) and my arms have slowly started to sway to support my walk. The suit thus creates new movement trajectories.

The suit’s effects on my brain functionality:

When used regularly I can feel the effects even in my brain. The direct effect is the calmness I have. I can concentrate and I do not get so anxious with my clumsiness caused by the CP. My ability to concentrate is controlled and I can ponder things with time. The suit also controls the parts of my brain needed for movement. The suit gives me the message of my limbs and how and when can I use them.

Because the suit helps me relax and be calm my epilepsy seizures have become smaller and fewer. The suit reduces stress, without it I have less tolerance for it and the risk for seizures becomes greater.

Generally the supporting garment helps me perceive and find new qualities from my body which I have not been able to do before. The suit has given my more body awareness and control. With time I expect to learn the new trajectories in my movement and control the disabilities caused by CP. The pressure garment is a physiotherapy tool in my everyday life. The benefit if the suit is remarkable for me, it’s my silent friend that guides and helps me move and use my body like it should be used. I’ve learned more things about myself and my body than ever before! This as a whole makes me and my body more integrated and I’m a happier person because of it. And the joy affects my everyday only positively!

To sum it up:

The pressure garment can be a miniscule thing to a regular person but to me, as a disabled person, it is of an irreplaceable magnitude! It’s a supported step in my new life’s path.

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