Husband with CIDP
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August 21, 2006 at 10:04 pm
Just wanted to thank everyone for all the information on this forum. My husband was diagnosed with CIDP Friday and if it wasn’t for this site I would have no idea what CIDP was. His doctor just told him he had CIDP and didn’t offer any explaination of what it is. He started IVIG treatments today.
I hope it works for him. It is hard for me to see him this way. He was always a strong guy. Now he’s weak, tired and has trouble walking. The stories on this site give me hope that this treatment will work.
Thank you. -
August 21, 2006 at 10:45 pm
I’m right there with you. My husband also has CIDP- it is the most difficult thing we have ever experienced together. He is having a rough night tonight- I hate to see him hurt so bad. I looked through the old wedding photos today- and noted neither of us had worry lines back then!
Be aware we are all there for you- you are not alone. I have no answers, but lots of questions and uneven emotions, but also have a lot of love to share- if it would help at all to talk to a kindred spirit, or comrad in arms, please email me direct.
Sigrid
[email]2sfm@bellsouth.net[/email] -
August 21, 2006 at 10:47 pm
[COLOR=”Blue”]Hi DeeDee and welcome to the site. I’m sorry your husband has CIDP, but I’m glad you found us and it has been helpful. We care and we share here. Most of what I know about CIPD came from my own research and this site. You will find lots of support here. If you need anything just ask. Take care, Vicki[/COLOR]
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August 21, 2006 at 10:50 pm
Hi DeeDee and welcome.
Sorry to hear about your hubby, glad to hear that he is getting IVIG. Ask lots of questions if you need to, we are here to help however we can. Take care and tell your hubby hello for me.
Jerimy
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August 22, 2006 at 2:57 am
Hi, DeeDee.
In our family, I’m the one with CIDP. Like you, I’ve found these forums invaluable.
[warning: shameless plug for the UK site coming!]
Don’t forget that there’s a lot of very good info on our side of the Pond–the article on CIDP at [url]www.gbs.org.uk/chronic.html[/url] is excellent. I tend to print it out for anyone who wants an introduction to the disorder.
Best wishes to you and your husband,
Deb
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August 22, 2006 at 12:00 pm
Hi DeeDee,
Have you registered with the foundation yet? (gbs-cidp.org) They will send you a package of info, as well as the GBS/CIDP Newsletter “The Communicator”. There are some very interesting articles in there sometimes.
Also If you go to the gbs-cidp.org web site, on the left hand side there will be links you can go to, one of the links is to The Communicator, and you will find links to most of the Communicators (exept the latest), with interesting articles in most. Hope that helps a little.
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August 22, 2006 at 8:12 pm
Thank you for all the replies. It’s nice to know I have a place to go when I need some support.
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August 25, 2006 at 11:28 pm
deedee,
There are challenges for the both of you coming in the future. I really applaud your efforts, wanting to find out more about CIDP. I am sorry that your neuro didn’t take the time to explain what CIDP is, or what it does. The worst time I had was the time of “not knowing”. Things were confusing, answers seemed vague, the future seemed so uncertain.
All of these things were scary. I was always forward looking, with a purpose. Then all of a sudden, hopes, dreams, and my future changed. After finding this site, I found out that there were others in the same boat, it became easier to deal with.
Going down the road, there will always be challenges for your husband, but there will always be challenges for you as well. Your life will change. Depending on the severity of his case, things could change a good bit. Being a caregiver can be pretty tough.
There are times my wife does great, and then there are times it is pretty hard on her. I know what happened to me has changed our lives, but we still have a good relationship. Things change, it is only how we deal with it that makes a difference.
I hope things go well with the both of you
Dick S
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