Kickas.org Forums Ankylosing Spondylitis General Discussion Friends and Family Support Group I am new and my dh has just been diagnosed

I know nothing about all this.
Can you direct me to:

the top three things I need to know now to help him
the top three things I need to understand about AS

He is 57 years old, very tall and the dr. says he doesn't think things will get much worse for him. But dh doesn't really want to know much about his condition and didn't really ask very many questions. So I am interested.

Thanks for letting me join you here.

Hi kally welcome,
He's late getting diagnosed I used to be tall but not any more.

1/ Be understanding when he's in pain.
2/ Don't smother him he will resent it let life go on as before.
3/ Encourage him to tell you if he has a problem.

The best thing I can say about what you need to understand is read as much as you can on here learn from the people on here who know what he is going through. We are all a friendly bunch and will always answer any questions you may have so please ask away.
The others will read and answer this and probably give you some more ideas.

Kevin

Kally,

You came to the right place. Welcome!


1. don't push him. The dx was a lot to take in. Let him absorb the rest at his own pace. When he is ready to talk, just listen. He is doing his best to find the right words to describe his emotions and physical problems. Beware: many AS'ers purposefully don't tell us how bad they feel. They don't like to complain and guys always want to feel strong.

2. learn as much as you can. He will need your support and understanding. Sometimes the people on KA can say thngs in a way that just clicks with you. Your husband might not have the words yet to describe how he is feeling.

3. go to each doctor appt with him. You will take in info that he will not and visa versa. It helps to talk about what the dr. said on the way home. Kind of cements the understanding of the info.

4.take time to talk every day. Keep your relationship strong. Be a couple, do things that both of you enjoy. Don't let the AS be the center of your relationship.

5. check out the No Starch Diet. It helps many to feel less pain.



Take care

Kally listen to these two they know what they are talking about in fact read more about AS and learn more right here at KICK AS just as i did.

Tommy P.

Thanks
At this point I honestly believe he is not in pain except from time to time. In fact I would have thought there was very little wrong with him except getting a bit older.

So I will stay here and learn and not push him and let him take his own pace.

Is there such a thing as a person with AS that is only affected a little bit?

either that or he is not letting you know just how much he is hurting. i know my husband keeps much of his pain to himself. he has to be in really bad shape for me to know at all. though just knowing this, now i know. my husband doesn't have AS, other chronic health issues.

i have undifferentiated spondyloarthropathy: inflammation but without the fusing. mine definitely flares and then goes down, never completely gone, but i definitely have good days and bad, good weeks and bad, good months and bad. not sure how i'll progress in the future, some things have gotten worse over time.

you asked initially, what's the best you can do for him and what should you know.

1. just to be there for him in whatever capacity he needs you too, i think that is the greatest gift of all. we all have different needs; i don't think anyone can guess for me what i do and don't need from them, but i will let them know if they just say a simple, "just let me know what i can do to help." and then leave it up to him.

2. just read all you can, here, other sources, there is no one way that these spondyloarthropathies go, many ways, so anything you read that sounds like an absolute, well, that's just one scenario in my opinion.

3. it would be great if your husband were to come here to, if he wants. its a nice place to be with people who can relate, lend a knowing ear, and give useful advice.

nice to meet you

Kally, welcome to KA.

I'm so glad he has you to look out for him. I want to chime in on one thing. It is entirely possible that he doesn't let you know how much pain he is in. My sweetie and are both have Spondys (he has Psoriatic Arthritis and I have AS). Even tho we are both very attuned to one another, and to the effects of these diseases, we try to protect one another from how badly they really are affecting us. We only really bring it up if it's truly horrible.

We soldier on, through the pain, getting chores and such done without complaint. Then, one day, we stoics turn to mush and snap at each other. That's when it's important to be patient. If his temper gets riled over some niggly, unimportant issue sometimes, he's probably being worn down by the pain or overwhelmed by the fears that this diagnosis can raise in us. He is older than most for a diagnosis, but then, my sweetie wasn't firmly diagnosed with PsA until he was 57 (although a doctor about 15 years ago did mention he thought my sweetie had it, there was never any follow-up so my sweetie didn't worry about it - he would have been in his mid to late 40s then).

Also, let him do things himself. He needs to do that for his own sense of self-worth. If you see him struggling, offer to help, but be prepared for him to say no. Sometimes, you might just have to step in and start helping unasked.

I hope the doctor is right about things not getting much worse. Does he have any fusing, by the way?

Hope that helps.

Hugs,

Kally,

What a good woman you are. I don't have anything to add to what the others have said. Just wanted to say hi, welcome and let you know that I wish we all had someone on our side like you. Support & love make all of the difference. Especially with a diagnosis like AS. It is scary. And the info online is (in my opinion) completely off the mark. So coming here, talking to real people who have this disease -- kudos to you.

Big hugs for being who you are.