Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Will I end up like my grandad?

Hey guys,

I saw my Grandad quite recently and he is very old (in his 90's), but also he is very stooped. I can't believe I have only just connected the dots. I don't think he has ever complained to anyone and never taken medication I don't think, but for me it's obvious that he's had AS for a very long time. To cut a long story short, this is really freaking me out. I love my Grandad very much, but I really don't want to end up in the position that he is in. Is there any way to prevent this stooping, or am I doomed to follow in that path due to my genes?

Thanks for any advice,
Seb

Will you end up stooped like your granddad? Almost certainly no.

Medicine has moved a long way since he first got this disease, and even though I don't think you have found the perfect treatment for yourself yet, you are only young and things are changing in the way AS is treated really rapidly. That means you will have access to a whole heap more possible treatment in your lifetime than he ever had, plus you can get MRIs to keep an eye on the speed of progression (which he wouldn't have had). If you keep under the care of a good rheumatologist, then there is no reason that you should end up with the same kind of deformity and problems that your granddad might have, though if he has got to more than 90 without being treated, then is it really the awful disability that you fear?

If you want to prevent the stooping, then exercise and good posture is the way to go - download the guide from the UK NASS site (theres an app too), keep up the low-impact exercising (including pilates, yoga, or maybe even tai chi), and pay really good attention to your posture. Your grandad likely got that way because in those days there wasn't such a good understanding of AS - I know my Dad (who would be in his 80's if he was still alive) got given corsets and stuff to stop his spine moving which was quite the wrong thing to do. If he'd been advised to keep on moving he may not have had his upper spine fuse in a slightly forward position, though he did exercise a lot in his later years, so didn't end up noticeably stooped.

Probably the biggest danger for you is how you work at a computer - you MUST set up your workstation ergonomically, and that means in most cases changing the height of your chair (most people get it wrong), possibly adding in a footstool as desks aren't usually the right height, and raising the height of your screen (again, most folk have it far too low, when it should be at eye level). If you google computer ergonomics you can see how to measure and check yourself. Also doing "desk stretches" and getting up and moving every hour.

My opinion is that you are definitely not "doomed to follow in that path".

Grandpa at age 90 with AS-- Must have great genes for a long life.

Before I had my surgery in June I was getting very bent over. It just hurt too much to stand up straight and also was too weak.

I would have been in your Grandpa's situation without a good Neurosurgeon. I imagine he was in pain. I am sorry.

Hi, seb:

AS is unique to each individual; chances are good that You will not become as severe as Your grandfather, but as You already know some of this is up to You!

HEALTH,
John

Hey Seb,

Just do what you are supposed to do and chances are that you won't end up like your grandad did. You might have to have some surgeries over the course of a lifetime but you keep doing the right stuff you have been doing and you might just end up fusing a might better then he did. Don't stress about it. Just love him while you got him and enjoy him your close connection with him.

I'll chime in and agree with the others here, some good advice and words of wisdom

I am impressed that he is 90; that's the part I'd focus on if I were you. Most of my relatives passed away in their 60s and 70s.

You are armed with information he never had, there is a lot more you can do these days (listed above) to help yourself.

These things are highly variable. Spondy runs on my mother's side of the family. My great grandfather's stomach inflammation was so great he ended up with stomach cancer; today I have prilosec, and now Humira. My aunt has had arthritis problems since her teen years and just got dx'ed with psoriatic arthritis in her 60s, 50 years of suffering first. And you know my story. And my mom has it much more milder.

So, I wouldn't worry by looking at your grandfather if I were you. Take one day at a time and just focus on you

My father had AS, his rheumy told him posture, posture, posture and stretching twice a day. My dad kept up with both words of advice and fused upright.

My dad passed that advice on to me. I have fusion in hips and some fusion in low back.

Tim

It is natural to worry! But...one day at a time. From Ad Kerkoff a clinical psychologist: quote is from Brain Pickings newsletter: Quote:

If you find yourself awake in the middle of night worrying, with thoughts whirling round repeatedly in your head, he has several strategies you can try. This is where imagery comes in useful again. Imagine there’s a box under your bed. This is your worry box. As soon as you spot thoughts that are worries, imagine taking those individual worries, putting them into the box and closing the lid. They are then to remain in the box under the bed until you decide to get them out again. If the worries recur, remind yourself that they are in the box and won’t be attended to until later on. An alternative is to choose a colour and then picture a cloud of that color. Put your worries into the cloud and let it swirl backwards and forwards above your head. Then watch it slowly float up and away, taking the worrying thoughts with it.

For those apt to dismiss this as Pollyanna psycho-blabber, Hammond points out that there is strong empirical evidence supporting Kerkhof's theories and offers another of his techniques for those who find themselves too skeptical to try the abstract imagery exercise:

Set aside a time for worrying. Your worries relate to real and practical problems in your life, so you cannot rid yourself of them altogether, but you can learn to control when you think about them. Fyodor Dostoyevsky famously commanded his brother not to think of a white bear, and we know from the experiment on thought suppression which followed that, given that instruction, you can think of nothing but a white bear. … Likewise, telling people not to think of their worries isn’t going to work. Instead Kerkhof recommends the opposite. Set aside 15 minutes in the morning and 15 minutes in the evening to do nothing but worry about the future. Sit at a table, make a list of all your problems and then think about them. But as soon as the time is up you must stop worrying, and whenever those worries come back into your head remind yourself that you can’t contemplate them again until your next worry time. You have given yourself permission to postpone your worrying until the time of your choice. Remarkably, it can work. It puts you in control.
End Quote.

Cemc, at the computer most of the day or reading books with my head bent over. Got to work on this. Thanks for the reminder.