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HI. New here, hubby with WD

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Hi everyone. I'm WYN and my husband BRAD is the one with WD. He's almost 42 yrs old, diagnosed probably when he was about 14 yrs old I think. He almost died because the doctors around here (north of Detroit) had no idea what they were dealing with back them. They finally got him down to Ann Arbor, got diagnosed, and eventually got better. He's on Zinc and doing ok. I just switched him to a new family doctor, with a physical scheduled in about 2 wks from now. He's about 6 months overdue for a check up and bloodwork. I've done hours upon hours of research on WD because I feel as his wife I need to know ALL there is to know and what to watch out for, what to feed him, what to avoid, and so on.

For our entire married life it's been pretty much a roller coaster. He's never really been "even" in mood. He's ok for a while, but typically it's peaks & valleys. I deal with him ok... but lately it's been pretty bad. It's actually been quite exhausting to be honest with you... being his personal cheerleader, trying to keep him "UP". I won't give up however!

I've finally been able to get him to see & agree that he may need something to help him with his mood swings and deep depression. Like I said, he's going to the doctor in 2 wks. I'll let ya know how that all goes. Is this typical for WD patients..? Emotional ups & downs constantly, aggression, depression, etc?

Also, yesterday we were at church... I glanced over at him and noticed he nodded off. I looked down at his hand and it was twitching. Nothing like I've seen before. Like a tremor. I nudged him... later told him I seen his hand shake. He denies ever noticing that before. I told him to let me know if it happens again. Maybe it's a one time only occurance, I don't know. Do tremors just start happening after being diagnosed for so long?

Also, he doesn't sleep! I tried him on Valerian......... nothing. Although he didn't try it very long. Said he hated the SMELL of it! Is insomnia common with WD?

I read comments on different support list, talking about manufacturers of Zinc. He was using the Zinc from the Walmart... and now after reading others comments, I think that may have been why his stomach has been upset, nearly every day. I am now thinking it's been since we switched to the Walmart brand of Zinc. I ordered the NOW brand of Zinc P. Should be here any day now.

Thanks for listing and offering any comments on my situation and life with dear hubby with WD.

Sincerely,
WYN

Explore topics in this discussion:

Zinc acetate Wilson disease Insomnia Depression Tremor

1 reply

Hi WYN,

I can really relate to you, because I feel like my husband and I are in the same boat, only I'm the one with WD and he is the one who is always supporting me and encouraging me. It does get very tough on the marriage, but try to keep your chin up! Things will get better as long as your husband can get his WD well under control. The symptoms that you mentioned could possibly be caused from the WD and possibly he's having copper re-accumulate?

I'm not sure if you have heard of or seen this book before but I would highly recommend reading it. Its "Wilson's Disease for the Patient and Family" by Dr. George Brewer.

Also, your husband needs to be on 50mg of elemental zinc 2-3 times a day. Just buying over the counter zinc isnt good and can cause for a person to get worse or even die. Has he been on Galzin (zinc acetate) before? I would really recommend getting him on that ASAP. If you have an issue with getting that covered, I would highly recommend contacting Mary Graper (she's the WDA president) and she might be able to help you. Otherwise if he wasnt able to tolerate the zinc acetate he could try taking it with a piece of lunch meat.

I think that tremors can come and go. I think it has to do with copper shifting around in the body or maybe he's re-accumulating? Does he still get seen in Ann Arbor? It is important to follow up on the labs at least yearly (24 hour urine copper and zinc, serum copper, ceruloplasmin, liver function tests, etc...) If you're able, maybe see if he could get in to see Dr. Fred Askari at the University of Michigan Hospital. He runs a Wilsons Disease clinic there and is VERY good. I'm under his care currently and I live in Minnesota!

If you go on the wilsons disease association website there is another link to a list-serv forum that I think would be very helpful for you. Its more "active" and way more members to answer your concerns. I do know that quite a few people have had troubles with depression in the past, so I think it could be related (somewhat) to WD.
Here is a link to that website. All you do is sign up and you will then be able to post in the email forum. http://www.wilsonsdisease.org/content_sub.asp?SUB_ID=28&CAT_ID=16 CLICK on the "WILSONS-LIST" link and it'll let you know how to sign up!

Also, if you'd like to contact me directly, feel free. I am a wilson's patient myself. mjaffeldt@hotmail.com

Best wishes,

~Melissa

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