Speaker A
So this is a fairly serious video about my story about ankylosing spondylitis, not like the other funnier videos that I've put up on YouTube so far, which have been very few and far between.
Michael Feehan shares his personal journey with ankylosing spondylitis, detailing diagnosis, treatments, and life challenges.
Key Takeaways
- Early symptoms of ankylosing spondylitis can be subtle and misdiagnosed.
- Regular movement and exercise are crucial in managing ankylosing spondylitis.
- Hip replacement surgery can significantly improve symptoms and quality of life.
- Chronic illnesses like AS require ongoing support and understanding from caregivers and medical professionals.
- Despite severe physical limitations, maintaining activity and a positive outlook is vital.
Summary
- Michael Feehan recounts growing up in Melbourne with no early symptoms of ankylosing spondylitis.
- He experienced a severe eye injury leading to recurring iritis, an inflammation related to his condition.
- At 18, he suffered chronic lower back pain after an accident, which was initially misdiagnosed.
- A specialist confirmed his ankylosing spondylitis diagnosis and prescribed daily exercises to maintain spinal health.
- He endured years of pain, limited medication options, and challenges including smoking and weight loss.
- Despite difficulties, he stayed active and continued working, emphasizing the importance of movement for AS patients.
- Michael describes his first marriage and the support he received with his exercises despite relationship strains.
- Later, he faced severe hip damage requiring bilateral hip replacement surgery, which improved his mobility.
- Post-surgery, his ankylosing spondylitis symptoms and ulcerative colitis largely subsided, though he retained spinal rigidity.
- He concludes with reflections on living with the disease’s long-term effects and maintaining quality of life.
Full Transcript — Download SRT & Markdown
Speaker A
So I thought I would just explain to you how it came about. So as a child, growing up in Melbourne, Australia, working-class Catholic family, I never really, it didn't really sort of strike me that there was anything wrong with me.
Speaker A
I was a little bit inflexible. I didn't like sport much. I didn't really have any aches or pains or anything like that. There was nothing that triggered it. But I left school at 15 and I became a toolmaker.
Speaker A
And in those particular days in the 1970s, being a toolmaker was a very dangerous job. And I remember when I was working on drilling concrete with a hammer drill, and with that you have to blow the dust out of the concrete with an air gun.
Speaker A
And at that time the concrete dust went into my eye and I got this severe injury. I went to the first aid room and at that particular time they pretty much just got an egg cup full of water and put it over my eye and washed it out.
Speaker A
It didn't really ever get better. It just got worse and worse and worse over the last or after the next two or three weeks. So I had it investigated and fair enough, it seemed to be after diagnosing iritis or uveitis as it may be called, which is an inflammation almost like an arthritis of the eye.
Speaker A
And I was stuck in the Melbourne Ironer Hospital for four weeks while they injected huge amounts of cortisone into my eye. It did eventually heal up, but I would then continue to get iritis at least two or three times every year.
Speaker A
At about 18 years of age, I heard my sacroiliac joints being in the back of a car. It went over a big bump. I was sitting in a four-wheel drive at the back and they had a sort of a metal shelf.
Speaker A
And that metal shelf smacked straight into my lower back and I was in pain ever since. It never recovered. It was like having sciatica down both of your legs at the same time. Had an x-ray, nothing really was found, bit of inflammation, nothing more.
Speaker A
Then about a year later, after the pain was consistently always there, I went to a doctor, my local general practitioner who had been our family doctor for years and years, and I said I am in pain. He said, where are you in pain? And I said I am in pain everywhere.
Speaker A
And he looked at me very seriously and he says, well, we need to get you assessed by a specialist. It could be one or two things. It could be rheumatoid arthritis or it could be ankylosing spondylitis. I'm thinking the latter.
Speaker A
So a week later I was off to a Collins Street specialist in Melbourne. Collins Street is like Harley Street in London, where they had the best specialists. And I went up to the 11th floor and I saw this very upper-class doctor.
Speaker A
He was sitting in his room smoking a cigarette, drinking coffee. "Come in here, my dear boy, take a seat over there." And he came and assessed me, bend over. "Right, thank you." He laid me down on the couch, checked on my chest, listened very carefully, looking at me very seriously.
Speaker A
And he goes, "Right, we'll send you down to the vampires on the ninth floor where they'll take some blood. We'll get a blood test from you and we'll see you in a week's time."
Speaker A
A week goes past, come back. "Well, my dear boy, you have ankylosing spondylitis. This is what you need to do. Each day, underneath the shower if you like, breathe in deeply and keep your chest expanded and then release.
Speaker A
And then for 30 minutes every day, lie completely flat on the floor just to keep your spine straight so when it does set, it will set straight because by the time we're all 40, we want you walking down the street being able to see the horizon."
Speaker A
I went, okay, so I didn't know whether this was a good thing or a bad thing or what it was, but he didn't really tell me how serious it actually was. Life continued. I was in terrible pain.
Speaker A
The only medication at that particular time were just anti-inflammatories, and the anti-inflammatories were making me sick in my stomach as well. So time went past and I got sicker and I was in pain and I was terribly thin and I didn't really look after myself.
Speaker A
I used to smoke a lot of gunner in those days. It didn't really sort of, people say that it's a painkiller. Well, it didn't seem to sort of make any difference. But I was a very thin, pale person.
Speaker A
I tried to go on sickness benefits but was refused by what they called in those days the Commonwealth Medical Officer because he believed with my condition you have to stay active and it's the best thing for you.
Speaker A
And he was right. He was right. And I did. I stayed active. In fact, I was never unemployed. I kept on working through the pain. And if you have ankylosing spondylitis, I would advise you keep on going, just keep moving.
Speaker A
You have to keep moving. If you stay inactive, you will just go to the pack. You have to keep going. So important. Anyhow, so life continued and I got married at 24 to, I would describe, a quite dominating lady.
Speaker A
But she was caring in the fact that she helped me with my exercises, especially when I laid on the floor every day. And you know, I was in so much pain and she would help me up.
Speaker A
In fact, she used to make, she made a board that when I laid on the board instead of having to lift me up because it was so hard for me to get back up, she would lift the board up and I would go with it and scream my head off at the same time.
Speaker A
Anyhow, that relationship petered out because, well, if you can imagine the difficulties of looking after a person with such a condition, and I mean people will only have so much patience. There are people who are a lot more caring.
Speaker A
Anyhow, after that, which was I think 1992, and I then had some other relationships at the same time. They were all good, had some great relationships, and then I got married to my second wife.
Speaker A
Now just before I got married to my second wife, I went to another rheumatologist who in a blasé way just said, "Your hips are totally worn out. They have to be replaced," which absolutely floored me because I couldn't walk.
Speaker A
And I had asked my GP before, "Please, is there anything wrong with my hips?" And no, you don't have displacer or whatever it was called. I said, okay, fine. So we continued on.
Speaker A
But then I did have an x-ray and it showed that the hips were completely destroyed. So I went and saw another really good specialist and orthopedic surgeon who said, "Look, we're going to replace both your hips at the same time just so that we can straighten you up more."
Speaker A
When he did do that, I got paralyzed in the left leg through the nerves being stretched, but miraculously it recovered and I was able to use the quadriceps in my left leg.
Speaker A
It was through hydrotherapy that I noticed that my leg was starting to kick again. So my hips were replaced and it was like a brand new lease of life. I could walk really well. I could, I could do most things except run.
Speaker A
After my hips were replaced, my symptoms of ankylosing spondylitis seemed to recede at the same time. While I had had all of this pain, I had another symptom of ankylosing spondylitis which is called ulcerative colitis, which is nasty.
Speaker A
And up until that point, it was being consistent all the time, but after the hips were replaced, all symptoms vanished. In fact, all the symptoms started to go, including the pain of my ankylosing spondylitis after my hips were replaced.
Speaker A
Now I don't know whether this has got to do with all the blood they had to pump into me since apparently I'd lost so much blood on the operating table. They had to pump me full of fresh blood.
Speaker A
But all symptoms stopped and the disease pretty much burnt out. But it's left me with the complete rigidity from my neck to my ass.
Speaker A
And so I'm a walking statue. I don't move very well, but I'm fairly, I suppose, upright to a degree, but my neck is forward. I've continued to sort of go on.
Speaker A
Okay, so the disease completely burnt out and it didn't leave me with any pain anymore, but I was left with mechanical issues of the condition where everything had...
Speaker A
okay so the disease completely burnt out and it didn't leave me with any pain anymore but I was left with mechanical uh issues of the condition where everything had set my whole spine was the classic bamboo uh spine um so in those
Speaker A
particular types of conditions you have to be careful about what you do um with your body in relation to um The Way You Walk uh you need to take care because if you fall you will break and that did happen to me the
Speaker A
first time somebody went through a stop sign hit me side on in my car and my spine snapped and it snapped at the lower end of my back near the Sacro ilc joints it was a very unusual break and the
Speaker A
orthopedic surgeon didn't actually notice it until 2 weeks later and it was after that when they did discover it uh they had to put me in a cast and my spine just fused up again like anking spondilitis does and I was okay
Speaker A
but the accident had left me slightly bent forward a a little bit um so I wasn't as straight as what I was before then another accident 5 years ago I was riding my bicycle and I don't know whether I just
Speaker A
blacked out or what happened I I can't even remember I was on the tram tracks in the middle of a road and the next thing I noticed is I'm surrounded by a circle of people one person said you've had an accident
Speaker A
you're in the middle of the road in mulvin uh the ambulance is on its way I noticed and looked around and I saw there was a lot of blood which was mine then I passed that again I was in
Speaker A
the Alfred Hospital in Melbourne which is the main hospital in Melbourne a strager and they instantly recognized I had ankos spiz because they did a complete scan I had broken my neck I had a head injury and slight brain trauma and I had
Speaker A
cracked my skull here um and I had smashed my arm to Pieces okay so it's the third day now after trying to film this video and all I can say is um thanks thanks Canon uh yeah reliable stopping every 15 minutes on
Speaker A
4K yeah well uh I think I'll just use this for my car anyhow what I was talking about is I was talking about having an accident and this if you fall that you will break with this condition and
Speaker A
that was the result of falling off an electric bicycle in wry Road in mvin and uh it was uh pretty bad um I ended up in the Alfred Hospital in Melbourne um if you have not already heard this and um
Speaker A
surrounded by doctors monitoring me after had scanned me saw that I had a bamboo spine which is what they would call in medical terms somebody with ankos spondilitis um which is all the vertebraes being joined together and um I was stuck there for 8
Speaker A
Days um and I was in a neck brace because I broke my neck luckily nothing uh in relation to my spinal cord was severed so I dodged that bullet I had some damage to the artery that goes to the brain uh which I had to
Speaker A
take aspirin for for 6 months uh so it wouldn't clot and give me a stroke and I had to wear that hard neck brace for 3 months and that was probably one of the worst things I have ever had to to do uh
Speaker A
in relation to having ankle loing spondilitis uh and the results of any injuries it was awful awful um but we got through it and um I couldn't sleep for 3 weeks uh but uh we got through it in the end and everything healed up
Speaker A
miraculously like I had this just uncanny ability to have these things happen to me and then survive and recover and keep on going after that head injury I was markedly a completely different person my um brain had some brain trauma
Speaker A
and with that came a personality change I had to go on anti-depressants shortly afterwards and so I was on anti-depressants zolof for about four or four years or something like that only until the last month I've gone off them and I feel like a
Speaker A
completely different person but um it was very similar I believe uh when Michael Hutchins the lead singer of nxs had his um motorbike accident he also had head trauma and some things I have been told uh don't quote me on this um may
Speaker A
have affected uh the way he was thinking at that particular time as some band members had come out and talked about uh and but that's just my opinion but it did have a marketly changed effect on the way I thought and
Speaker A
I wasn't quite the same person and in up being on anti- depressants as I said and I felt like being on zof is supposed to stimulate you get you going motivate you it did completely the opposite to me it made me
Speaker A
sedated uh it made me um not particularly motivated at all in fact I would lie on the couch most of the weekend uh at that time and um couldn't get myself off it uh but uh my marriage ended um shortly
Speaker A
afterwards and so I had to get myself together very very quickly I had good friends around me who assisted me and I was able to move on with my life and now that I'm off anti-depressants um and I don't in my opinion anti
Speaker A
depressants may have helped me through a particular period but in the long R run in the long run I uh don't feel that they have assisted me late in the last say year or so or 2 years uh I felt that
Speaker A
I was actually more anxious uh more depressed while I was on them and now that I'm off them I feel totally motivated totally more energetic wanting to get up in the morning and do things get things done by the end of the
Speaker A
day and made sure that I've accomplished something especially now that I'm retired and I have many many projects I want to do but getting back to ank spondilitis and activity so I was riding bikes um I was running into work every
Speaker A
day if anybody out there who has enclosing spawns and is running bicycles be careful just be careful it's you if you're going to come off a bike with a condition like we've got it's not going to be good um so I
Speaker A
haven't given up on the idea of doing things like that um I go to the gym now every day I go on an assault bicycle um I lift weights um and I do want an electric scooter I want to have some fun I want
Speaker A
to go out with my camera you know I'm going to be riding very very very slowly uh but um it's a risk I know but it's a risk that outweighs the fun and you've got to have fun you've just got
Speaker A
to have it so okay let's just summarize so with anian spondilitis if you are a sufferer you're in pain do as much as you physically can to alleviate the pain [Music] yes you're going to probably need medicines you'll need the immune
Speaker A
suppressant which is what has been Ed now but keep active don't give up keep going on and just get on with it just get on with it bloody will get on with it every day get out of bed and do
Speaker A
something get something done you'll get through it make sure you're looking at the Horizon by the time you're 50 keep your head up and keep strong thanks
Topics:Ankylosing SpondylitisMichael FeehanChronic illnessHip replacementIritisUlcerative colitisRheumatologySpinal rigidityLiving with ASPatient story
