Speaker A
You know when you can, you know when you can walk the legs off two red setters that you are doing something right.
Amanda Geard shares her 18-year journey living with ankylosing spondylitis and how treatment and exercise improved her life.
Key Takeaways
- Early diagnosis and personalized treatment can drastically improve quality of life for ankylosing spondylitis patients.
- Physical activity tailored to individual ability, such as swimming and yoga, is beneficial for managing symptoms.
- Emotional resilience and hope are vital in coping with chronic illness.
- Access to appropriate healthcare and specialists makes a significant difference in disease management.
- Ankylosing spondylitis can be managed effectively, allowing patients to lead active, fulfilling lives.
Summary
- Amanda Geard was first symptomatic with ankylosing spondylitis at age 19 but was misdiagnosed and treated with anti-inflammatories for years.
- She experienced severe pain and disability before finally seeing a rheumatologist who diagnosed her condition.
- Initial treatment options in Australia were limited, with medication only available after visible degeneration on X-rays.
- After moving to Ireland, Amanda received a more personalized treatment plan that significantly reduced her pain.
- Exercise, especially yoga, swimming, and walking, played a crucial role in improving her mobility and quality of life.
- Amanda emphasizes the importance of persistence and hope despite the challenges of living with a chronic illness.
- She highlights the emotional impact of the diagnosis and the relief of having a name for her condition.
- Amanda balances her life as a geologist and author while managing ankylosing spondylitis.
- She encourages others with the condition to keep trying new treatments and activities to improve their wellbeing.
- Amanda’s story is a message of empowerment: ankylosing spondylitis does not define her.
Full Transcript — Download SRT & Markdown
Speaker A
Just going a little bit through the trees now, and then we’ll get to the top. We’ll get a good view of Kerry.
Speaker A
Come to the side round here, and then we are through the bog and that’s it.
Speaker A
I'm Amanda Geard. I'm thirty-seven years old, and I live with my husband, Barry, and our two mad red setters. I grew up in Tasmania, and I’ve lived in Ireland for seven years.
Speaker A
I live in Co. Kerry now, and I couldn't imagine a better place to wind up. I love the people and the culture and spend a lot of time in the landscapes as well.
Speaker A
I'm a geologist by training, but I have recently become an author, and now I split my time between the two professions.
Speaker A
The first symptoms I had of ankylosing spondylitis were back when I was nineteen. I'm thirty-seven now. It was a little more than an itch, and I thought at the time it might be a pulled muscle or bursitis. I took a couple of paracetamol and just carried on because
Speaker A
that’s what you do. I thought that the pain would go away, and it didn’t. It got worse and worse and worse until it got to the point where I felt like there was a knife stabbing into my back.
Speaker A
At that point, I went to the GP in Tasmania, where I was born. He gave me some anti-inflammatory and said, "See how these go." I took a couple, and to be fair, they did reduce my pain level. I went back to him, and instead of trying to diagnose,
Speaker A
the response was, "Here’s another script for a month for anti-inflammatories." That began my fifteen-year-long love affair with this prescribed medication for an unknown illness.
Speaker A
It was three years later when I had a really bad flare-up. You know, the pain was unbearable, and I couldn’t walk. I actually went into emergency in a hospital in Tasmania and eventually made it through the system to a rheumatologist
Speaker A
who put me on a steroidal drip and reduced the pain a little. We went through this process of trying to diagnose where this three years of pain had come from.
Speaker A
I'd never heard of ankylosing spondylitis before that point, and I thought it sounded like some subspecies of sea cucumber. When I went away and googled it, I realized that it was just as unappealing. You’ve got this white-hot pain in your pelvis, and as the disease progresses,
Speaker A
that does move up your spine, you know, across your ribs. Any twists or sideways movement really causes just unbearable pain where you do feel like you are in a vice to a certain extent.
Speaker A
At that point in Australia, if you didn’t show extreme degeneration on an x-ray, you weren’t eligible for any disease-modifying medication. Really, at that point, the rheumatologist unfortunately opened the door and said, "Off you go, there’s nothing more I can do for you." It was
Speaker A
a real shock (getting emotional…). I was very sporty, really driven. She said that I would be, it would degenerate to the point I'd be in a wheelchair. It was such a shock, but on the flip side, the beast had been named, and I felt like I had something to fight.
Speaker A
A few years after I moved to Ireland, I went to see my GP in Killarney, Dr. Linda O’Callaghan, on an unrelated matter. I said, "I’ve got; I was diagnosed fifteen years ago with ankylosing spondylitis, but I don’t suppose it matters, you know, it is what it is." She said, "No, Amanda,
Speaker A
it isn’t. You shouldn't be living like this." She immediately referred me to University Hospital Kerry. I saw a brilliant Rheumatology Consultant, Dr. Fahid, and he assessed me. I felt as a person, not as a number. He said, "I think this treatment plan will work for you,"
Speaker A
and he was a hundred percent correct. Within a number of weeks, beyond anything I could have ever expected, my pain levels decreased and decreased.
Speaker A
The me that you see today is quite different from the two-year-ago Amanda who did struggle with exercise. A couple of years ago, running was certainly out of the question. Yoga was very difficult, but it is really beneficial for increasing mobility with
Speaker A
ankylosing spondylitis. I would find that probably half of the moves I would be unable to do, and there were times that I got stuck on the yoga mat, and my husband would have to help me off it because I was completely in pain and unable to move. So it always,
Speaker A
I always reflect on that at the end of a yoga session when I lie flat in Shavasana and think, "God, here I am lying on my back on the ground." You know, this is still a huge novelty.
Speaker A
Once you take away that aspect of pain, you kind of free your mind to be able to get fitter, and the fitter you get, the better you feel. Every morning you wake up, and you can get straight out
Speaker A
of bed. My pain has decreased to the point that I could go for a run in the morning if I wanted to, and that’s completely unheard of for a decade and a half. The other positive point of decreasing
Speaker A
your pain is not just that you can be more mobile, but you can also at times be a little less mobile, so you are able to sit at a computer making sure you hop up every half an hour without the pain in
Speaker A
your pelvis consuming your mind rather than what’s there in front of you that you are trying to achieve.
Speaker A
Swimming is fantastic for ankylosing spondylitis. Water gives you this buoyancy that takes some of that pressure off your pelvis, particularly if you can do backstroke. But just getting in the water, a lot of people find, and I found, that it really decreased the pressure on some of my joints.
Speaker A
So I'd really recommend swimming to people. But honestly, if you can just get out and walk, it doesn’t matter if you’ve got to have a stick or two sticks or whatever you need to do to just keep on moving, it really does help. Have a quick look at this video
Speaker A
and see the things that I'm now able to do that for fifteen years I wasn’t able to do, and just use that as a light at the end of the tunnel.
Speaker A
You really, you really can improve things. I know there are dark days, and sometimes you give in to them, but every day you do trust a little more, and you can not necessarily push yourself more, but you can try things that you haven’t had a go at for such a long time. I'd really recommend it.
Speaker A
I'm Amanda Geard, and I may have ankylosing spondylitis, but ankylosing spondylitis doesn’t have me.
Topics:ankylosing spondylitischronic illnessarthritisrheumatologypain managementexercise therapyyogaswimmingpatient storyArthritis Ireland
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