being both, carer and afflicted in one, both your, and your husband's, problems are quite familiar to me.

First of all, as far as I can see, there is not good in being shy of aids available. They are helps and they help and make both your lives easier and more agreeable.

There is no good in either of the two of you to withdraw from live. There is plenty a thing a person in a wheelchair can do (very little, I don't manage anyway), but you as well must be loking after yourself. And you need your time alone just as well. Anything else is a question of mutual trust. Your husband will have to learn, not to see what he may have lost, but what he can do still... and what he is gaining. And he will have to learn to be confident with the aids available.

My advice to the two of you: get any aids available as early as possible... and don't be shy using them. A wheelchair is not a curse... but a grand help to get out of isolation. Same can be said about a lot of other helps. They ease and make life liveable. The two of you need interests, both together and for each of you individually. And it would be a good idea for both of you, you AND your husband, to post. This is a grand board and we are ONE BIG FAMILY, where all help together. Both, you and your husband need to vent your fears and anxieties... and share your joys with people, who understand. Jim's book (can be ordered... see homepage) is a great help too to let you see how other people cope. This illness is a damn nuisance... but not the end of the world. Depending on personal progress (the stuff with all it's implications differs from person to person) some of us lead very active lifes. But those, who can not, make their life liveable just as well.

God bless you and a big hug to the two of you

Believe me, the replies you received to your posting
by Jim, Ann & Marylin should be taken very seriously.
They have offered straightforward unformation and advice.

This is a desease where you cannot turn back the page.
You must adjust your lifestyle to cope with it and
derive satsfaction from your participation. One consolation
is that it progresses very slowly, giving you more
time to adjust accordingly.

I was confirmed with ibm in 96 but I believe now that
it probably started back in 89

My wife is a nurse and a very caring person. She
helps me a great deal, and about every month I must
rely on her for another avtivity, dressing, uncorking
my bottle of wine, at church etc. I do everything I can
but I must rely on her for a number of matters, and
she is always there when I need her.

I will pray for your husband, and for you to both
cope with this new life

"BON COURAGE"

i now have a power wheelchair, a converted van and an all electric bed and a super shower chair...we just moved into a remodeled house that makes things easier for us both...
my three sons and their families..6 grandchildren...live nearby and seeing them brightens my day...

i have often said to ken that i'm glad it's me that has this because i think it would have been even harder on him to face these physical limitations...based on his personality, activities and self image...also, in general, men have a harder time expressing their feelings...i know it's been difficult enough for me to come to terms with...perhaps the good thing is it happens over a period of time so small adjustments are easier to do...and i've a pretty mellow attitude...reasonably able to roll with the punches...

that said, there are days when i long to be the me i used to be...times when i am saddened and frustrated at the turn my /our life has taken...times i'd just like to punch a wall..times when ken goes off to do his thing that i so wish i could be doing too...

but that will never happen in the old way again...so we use as many things as we can to make life as easy as possible...one of the things i do regret is that we didn't get some of the adaptive equipment soon enough, and that we struggled doing things that could have been made easier..part of that can be denial and part not knowing what's out there...the internet can be a wonderful resource for finding helpful items and information...and these boards and the MAA board can offer infomation and emotional support for you and your husband...

there is no doubt that your lives will slowly change...what happens down the road between you and your husband will be based in part on each of your personalities and your relationship before the dx of ibm...you must keep your outside interests, but you may have to adjust how or when or how often they are done....your husband will need to understand that it is crucial to his well being that you remain as physically and mentally as healthy as you can..

As website owner, I welcome you to our website. We have people registered from 17 countries, all with one of the Myositis diseases.

I was dx with IBM in August 1991. You didn't give any information about your husband except he was dx w IBM six months ago. You didn't tell of his limitations, age, medications, or anything about him that we who have been down the road can intelligently response in answer.

Sure, he is angry, feels insecure, helpless and afraid of the future. I went through that as well. But six months isn't long enough to even learn what you should know about IBM.

You being a social worker must be aware of the five or six stages he will have to go through before he finally realizes that life will never get any better with an IBM dx.

Adding to my IBM dx in 1991; our only son died w a heart attack instantly in less than 1.5 years. He took care of everything I couldn't do anymore; never worring me about any financial problems or maintenance problems about the properties. We then felt totally alone.

If you have children, you need to get all the information you can find about IBM, have a family meeting, and tell them that you need help.

Sure, you want to continue your life as it was, but it will never be the same again. You will find as your husband progresses that your lifestyle will always be in a changing lifestyle. You both need to be involved in a support group or neither of you will be able to handle this weird illness.

I do know of spouses who have left their husbands when they were dx w IBM. That is being truly selfish and a betrayal of the wedding vows.

Post as often as you wish. Perhaps others who have also gone down the lifestyle changes we all have had and be able to help you and encourage you. Both you and your husband have to get a good attitude about him being ill or you will both suffer.

I wish you well.