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Husband has MS...am I overdoing it?

Posted: Wed Jan 14, 2009 1:20 pm
by ladybates
My husband was recently diagnosed with MS last week. He was hospitalized right before Christmas because he lost complete balance and coordination on his left side (arm and leg).

Since we received his diagnosis and he returned to work I won't let him do much at home because I'm afraid that he will have a relapse. He had a problem on Monday at work where his left arm went a little numb again. Am I being too overprotective or am I doing the right thing?

Posted: Wed Jan 14, 2009 1:46 pm
by DIM
Don't worry I am also overprotective with my wife and stopped her from her job months ago for this reason but she has had many relapses in the beggining, at least try to not overdoing it!
Better safe than sorry im mh humble opinion.

Posted: Wed Jan 14, 2009 2:15 pm
by notasperfectasyou
First, Welcome to TIMS!!!

This is a great place to be for info about MS.

IMHO, I think (and my wife Kim who has MS would agree) that it's important to not be over protective. If you think about all the things you can do as say ...... a pie-chart. Many MS'ers find, over time that they can't do the whole pie and it's disturbing. Clearly, if you were recurringly reminded of something that you could not do as well as you once did, it could get annoying. I'm guilty. "Can I help you?", ""Let me do that", or the classicly well intentioned, "I don't want you to get stressed out over it". When your life is down to half a pie chart of things you can do, You want to do them with pride in yourself that you have these things you can do well. It's not healthy to allow others to take over the tasks that you once had command over. Like I said, I'm guilty and it's been hard for me to learn to --- not help. But, honestly, you need to give your spouse as big a pie chart as they want to try. It's important.

If he is still working, let him be.

What meds is he on? How affected is he? What kind of MS does he have? There is a lot you can do that the doctor won't tell you. Poke around here and you'll see that knowledge is your best weapon in this. Choosing to be informed and to learn will carry you and your relationship far. It's important.

Ken

Posted: Wed Jan 14, 2009 2:21 pm
by ladybates
Thanks for the responses.

Ken, I don't know what type of MS he has yet. We didn't know that there were different types of MS until after his visit with the doctor. That's on the list of questions to ask her at our next visit next month.
She has him scheduled to begin taking Avonex, he hasn't started it yet. He is waiting to hear from the nurse that's supposed to help him get started with it.

I will try to let him decide when he's had enough from now on.

Posted: Wed Jan 14, 2009 2:37 pm
by notasperfectasyou
Start with the Avonex board here at TIMS. There is a lot of good advice there. Just as an opener, most of these MS therapies are .... not pleasant. Kim was on Avonex for more than 10 years and then ...... well it's a list. Plan to be overwhelmed, but please for your own sanity .... don't just do what the doctor says. It's not his/her MS - it's your's and you don't really get much of an owners manual, but we have a good one here at TIMS and the knowledge is FREE! We all share in this experience together and as one we are far greater than if we had taken MS on alone. Ken

Posted: Wed Jan 14, 2009 2:40 pm
by cheerleader
Hi Lady...
So sorry you find yourself here. I was standing where you are now 2 years ago. I just want to say- hang in there. Remember to breath (and sleep and eat) and take care of yourself.

I was also deathly worried that my husband would send himself into a relapse. He was scheduled to fly to Prague and conduct an orchestral recording session just two weeks after his diagnosis. I wanted him home, safe with me, but he wanted to go and do what he loves to do. He was up and walking after steroids, and assured me he would ask for help if he needed it. His neuro gave him the go ahead. I spent the whole week he was away praying and trying not to worry. It turned out to be the best thing for both of us. I learned that he was stronger than I thought, and that he knew his body well. He learned that he could still be himself.

You are both taking on new roles...as MS patient and spouse/caretaker. This will take more talking, listening and really hearing each other's needs. Your husband needs to feel in control. Let him ask you for help when he needs it. Let him go to work and feel like himself. When and if he can no longer do that, you'll both know.

Keep posting, reading, learning about MS. It seems overwhelming right now, but you will get a handle on all the medical mumbo jumbo and maybe even come to understand it! PM me if you want.
all the best,
the aging cheerleader
PS We're 2 years with no relapse or progression and my husband is still working and making me worry, so nothing is written in stone with MS. Just wanted to give you some hope....

Posted: Thu Jan 15, 2009 7:33 am
by ladybates
Thanks so much for all of the wonderful advice. My husband and I have been communicating with each other over the past week (probably better than we did before he was diagnosed with MS). I am trying to make sure that he understands that he's not in this alone. This affects both of us as well as our two children. We all will have to make some adjustments and try to find a new "normal" for our household.

I am soooo nervous about the Avonex because of what I have read on TIMS and other places.

I feel like I have to take on most of the housework and household duties with the children because he is pretty exhausted when he comes home from work.

I have been all over TIMS for about a week now and there have been so many helpful suggestions. It has been a major help for me. Thanks to all.

Posted: Fri Jan 16, 2009 2:20 am
by MrsGeorge
Hi Ladyb

Welcome. It's a tough balance to get right and your husbands ability will vary over time. Sometimes I am super-energetic and can come flying home from work cook a meal, do the housework and feel great (rare). Sometimes I get in and go straight to bed - and there is a whole range in between. My husband and I work together in our home to get stuff done - I do as much as I can when able and he picks up the slack when I am not (took us a while to get there). Try not to over protect him though.

I still try to keep doing all the things that I love - I like being able to look after my husband and do the 'good wife' things, I still go to the gym and salsa dance and do tango lessons. Although MS can make life difficult at times I would definitely recommend not shutting down from life and hiding away in case doing too much brings on a relapse. I just try not to overdo it.

I hope your doc can help with some answers when you see him.