Kylie was diagnosed 2 years ago with a rare neurological condition called Orthostatic Tremor. She was only 41 at the time. There are things she can’t do that well anymore, there are other things she has to do differently, and there will come a time when she won’t be able to do them at all, but she has learnt to stay positive and focus on what she can do.
(Banner photo: ABSS Winter Foal & Youngstock Spectacular, Elmore Victoria, June 2025)
In her own words, this is Kylie's ethos in a nutshell: "When people said to me 'do you think you can do that, or, you might have to give up horses', what did I do? I grabbed my daughter’s new Welsh pony and threw myself back into showing.”
Read Kylie's story below and we challenge you not to be impressed and filled with admiration for her attitude and can do approach!
Welsh National Show at Tatura Victoria, March 2025. Photo credit: Glenys Lilley Foxwood Photography.
What is Orthostatic Tremor and how has it changed my life?
I was 41 when I got OT. It felt like it happened overnight but looking back now there were probably some warning signs that I just brushed off at the time as being clumsy. I wasn’t diagnosed straight away, Thyroiditis hit me at the same time, so while we were busy managing that, we didn’t realise there was another condition hiding in the background.
The next few months were tough. We had just moved house, and I had started a new job, all while juggling multiple tests and scans and bouncing between different specialists and doctors.
It became a process of elimination in a way. Lots of scans were done to rule out other conditions such as MS and Parkinsons. Each time I was thinking ‘ok so it’s not that, so what is it?’. A standing EMG was then done at the Royal Melbourne Hospital which confirmed the tremors were Orthostatic Tremor. When my neurologist told me I had OT I was relieved that we finally had an answer, however I wasn’t prepared for what this diagnosis would mean and how my life would change.
Orthostatic Tremor is a rare movement disorder that causes rapid muscle contractions in the legs when standing (tremors). Little is known about OT. It is rare, with no cure and is considered a progressive condition. It affects balance, coordination, confidence and our ability to do simple tasks. It puts pressure on the whole body. We are fighting to stay balanced, so we automatically adopt a wider stance which in turn affects our hips and back. For me, the biggest toll on my body has been the constant lower back pain.
The tremors can transfer to other parts of the body, such as the hands. Imagine not being able to brush your teeth without shaking. Imagine the frustration of not being able to stand in the kitchen to cook or make school lunches. It makes putting make up on fun and you should see me trying to pluck my eyebrows - lucky I have any left! This is the everyday reality of those with this condition. Think about all the times you are standing. Now think about all those situations where you wouldn’t be able to stand. You feel like you are letting yourself and your family down because you struggle every day. I am relying so much on others.
I would describe the feeling of OT as constantly standing on a wobble board, with legs like jelly that feel as though you have just run a marathon. Your toes curl trying to balance and you become panicked while you try to find a seat or something to lean on.
Horsemanship clinic at Merton Park, North East Victoria. Photo credit: Lynne Murray
Sadly, very little is known about this condition, it can be misdiagnosed or overlooked, and medication is a bit of trial and error. The medication that is currently prescribed can take the edge off the tremors, but it doesn’t make them stop. And for some, medication can have significant side effects, or you can develop a tolerance.
OT has put me on an emotional rollercoaster of denial, anger, upset and frustration. I started out thinking a simple pill would make it go away, and I soon learnt that OT was here to stay. This would become my new ‘normal’. Day to day activities such as waiting in queues or browsing the shops are difficult and sometimes impossible, especially if places are busy and I can’t move around freely and quickly. It’s really hard to negotiate crowds, I get off balance easily and often bump into things. I have to either move quickly or sit regularly, anything that involves standing or walking too slow and the tremors make their appearance. I may come across as impatient as I try to get around quickly, but this is me trying to keep OT at bay. I look back on the simple things that you really take for granted, like having a shower, hanging out the washing or putting on shoes. I can no longer do these things without shaking. It’s painful and it’s frustrating.
OT has been hard to accept and even harder when there is so little known about it. I felt very much alone in my thoughts and with this condition, then I came across a Facebook group for people with Orthostatic Tremor called ‘Orthostatic Tremor Support Network’. The group has members from around the world. This wasn’t just a group, it was the support network I desperately needed. For the first time I was not alone, it gave me both a voice and an ear with people who truly understood.
12 months ago, as the reality of this condition hit me, I knew I had to change my thinking. I may have OT but I didn’t want OT to have me. It was at this time that I came across the most perfect little pony called Dallu Piccolo. He was only two, but the moment I saw him I knew he was something special and would be a perfect pony for my daughter. What I didn’t know at the time was that this little Welsh pony (who my daughter Marlee would nickname Ollie) would be the start of a new journey for me and give me the motivation I needed not to give up.
Kylie & her daughter Marlee. Euroa Pony Club Gymkhana March 2025.
I was focused so much on all the what ifs and all the negativity of OT that I was missing out on the now. I needed to do what I could now, while I still could. My own type of bucket list. With those thoughts in my mind, I signed Ollie & I up to a Horsemanship clinic at Merton Park, in North East Victoria, for a weekend of in-hand ground work and obstacle training. I remember being asked ‘Are you even going to be able to do that?’ I didn’t know but I was going to try.
Horsemanship clinic at Merton Park, North East Victoria. Photo credit: Lynne Murray
When I did my registration, I mentioned my medical condition on the form. The organiser, Lynne Murray, contacted me to say she had looked up what OT was and would have a chair in the arenas for me to use. To have someone acknowledge and understand my condition blew me away. Fast forward to the clinic and we had the most incredible two days away. Yes, I got shaky, and yes, I needed that chair many times or a post to lean on, but WE DID IT!!! That was the motivation I needed.
While my daughter was doing the Pony Club rings on another horse, I was ‘stealing’ Ollie, as Marlee would say, and doing the led classes with him for exposure. It was then that I caught the competition bug again. This was the beginning of my new journey.
Victorian Winter Fair (Foal & Youngstock Show) at Tatura Park Victoria, May 2025. Photo credit: C-Photos Photography
In the last 12 months we have been to 11 shows together. Dallu Piccolo, with his chilled personality and sweet nature, has made competitions enjoyable. He now has a growing collection of ribbons, including Reserve Champion and Champions. However, my most memorable moment was at the Welsh National Show in March this year. I was so proud of his workout, and I honestly had to hold back tears when he came first in his led class for the 2 & 3 year old Welsh (Section A) gelding. It was an incredibly proud moment.
Welsh National Show at Tatura Victoria, March 2025.
Ribbons are no longer just ribbons to me, they mean so much more, they represent me getting back out there despite OT. They reflect my shift in thinking from 'I can’t' to 'I’ll try'. Life gets hard for us; we have challenges that no one else understands. But when you find something that is motivating, that gives you something to work towards or look forward to, it can really help. Every ribbon, regardless of the colour, represents the journey it has taken me to get there, and they are all proudly on display.
So how does OT affect life with my horses? It has changed the way I do everything, made me more cautious and less independent. I now have to ask for help. The hoof pick has been passed over to someone else and I need to sometimes take on more of an observer role. And let me tell you, as someone who likes to do things my way, taking a back seat can be hard. I have to be careful not to get knocked over, I’ve lost my balance a couple of times and ended up on the ground. When I’m sitting on a horse or walking in the open, I feel ‘normal’ but put me in more confined spaces and I become a bull in a china shop. My balance is all over the place, my head and legs don’t seem to talk to each other and stepping over a little feed bucket can be an effort. And if it’s dark, well I have no balance at all. Have you ever had that dream where your legs are frozen and you can’t move or that feeling of being stuck in mud? That’s the feeling I sometimes get when trying to navigate stepping over things. To think that I went from being able to get on my Percheron without needing a ladder to now needing someone hold me on a mounting block to get on a pony.
Once I’m in the saddle though, OT disappears, but it’s the lead up that is difficult. I’m shaking and unsteady on my feet while grooming, saddling and getting on. I’m sure the horses can sense the shakes and may misinterpret this as fear, which is not ideal if you are with a green or a reactive horse. I guess this is why Ollie is ideal, he has a calm and beautiful nature but I’m sure he looks at me at times thinking why in the world is she sitting on the ground.
Horsemanship clinic at Merton Park, North East Victoria. Photo credit: Lynne Murray
I remember having a riding lesson on a school horse not long after I was diagnosed. I was standing beside the horse listening to the instructor and I was noticeably shaking. This horse was very in tune with riders and very sensitive to body language so my instructor didn’t know how the horse would react to these shakes. But once in the saddle I was fine and the horse showed no signs that anything was wrong.
Something I do find difficult to do now is lunge a horse. I cannot stand still and watch a horse go round. It doesn’t just affect my balance from standing, but I get dizzy too. I can walk or run with a horse, I can even jump over little poles leading my daughter, I just can’t stay still.
I must add that stress makes the tremors worse. It is a vicious cycle where the tremor causes stress and then stress increases the tremor. So why, you must be thinking, would I do something as stressful as showing? Good question, but honestly horses have always been part of my life. They were my childhood and my passion. In a way they are what makes me, me. This pony, as small as he is in stature, has made a big impact on my life already. He has plucked me out of my negativity and given me determination. He has made me so proud. I wasn’t sure I would be able to handle the shows, but I adapted, and look at us now. We are out there giving it a go and having fun along the way.
Previously I would have gone to the shows by myself, but I now take someone with me as my strapper and my support. As stress will trigger more severe tremors, I need to be well organised and allow plenty of time. I can no longer run around getting ready. I arrive with lots of time up my sleeve, the earlier the better I say. While I’m still able to do a lot of the show prep myself, I need help in the background. When there is waiting between classes, I need to sit. Maybe I should feel like a VIP, taking a seat while someone else holds my horse? ;-)
To date I haven’t hit any barriers in the horse world. I’m the DC at my daughter’s Pony Club and the club is super supportive and very understanding of my condition, but I also only mention my condition when I really need to. It’s sad that many of the people around me right now, never knew me before OT. I have become self-conscious of how I stand and run. When I look at videos from shows I can see a change. I used to be a good runner, but now I’m starting to see my legs flicking out when I run and the fear of falling is written on my face.
For those of us living with OT, we want to raise awareness and understanding. We want people to know that we have an invisible, incurable and progressive condition that doesn’t just affect our body but our mental health as well. It is a cruel and exhausting disorder that is often overlooked. We would like to see more research into Orthostatic Tremor. We have this condition that we virtually know nothing about. We don’t know the cause or the cure.
Whilst OT itself is not life threatening, it is certainly life changing and the progressive nature of the condition places us in varying stages of decline. In the early stages walking may not be significantly affected. You may walk quickly but are unable to walk slowly. However, as OT progresses the walking distance tends to decrease and at worst some people may be unable to walk at all.
At a horsemanship clinic in Nth Qld, prior to OT
Horses are my life, my own type of therapy. And while I do not know what my timeline will look like, whether I will stay walking or not, my happy place will always be in the saddle.
I hope this can inspire others to not give up, to still do the things you love, even if you need to make adjustments. I’ve had to find my new ‘normal’ and as time goes on what this looks like will change too. I am determined to keep living life as I always have and to stay active for as long as I can, not just for me but for my family as well.
September is Orthostatic Tremor Awareness month. This year I’m planning to do a walk for OT to help build awareness, compassion and research. I want to do whatever I can to make a difference and be a voice for those with OT all around the world. Together we can stand up to OT, one step at a time!
Ollie in his Earlwood Solstice Combo
We got to know Kylie through her Earlwood obsession for her pony Ollie, before we knew anything about her condition. Hence when Kylie opened up to us, we wanted to help her raise not just awareness for Orthostatic Tremor, but also a general understanding of how seemingly 'normal' looking people, are living with conditions that effect their every move.
Ollie in his Earlwood Dual Season Rug
What can you do to help Kylie and others out? Next time you see someone sitting, don't automatically assume they're lazy. If they're using a walking stick, don't think they're old. If someone else is doing something for them, don't conclude they're loafing. They may just be doing the very best they can to live their life, and the people helping them to do this are stars!
If you would like to reach out to Kylie and the OT community, or assist with her awareness campaign in any way, please contact her directly via email kylie.humphreys81@gmail.com or message her new OT Journey Facebook page HERE.
