It is so much harder lately.

    • Anonymous
      November 15, 2010 at 3:48 am

      Hi everyone. It’s been a really long time since I paid you a visit. Norb usually does most of the posting, but even he hasn’t been up to that much lately.

      It has been just over a year now since his last round of rituxan and our move to WA State. Early on, after our relocation, he saw Dr. Weiss at UW and was offered double dose rituxan, but decided against it at the time because of possible complications.

      It seems to me that he has actually shown some improvement in his fingers and hands. He even gets out of his power chair at night and walks to the bathroom (albeit awkwardly).

      Problem is, he seems just so down. He’s put on weight, has atrial fib. Now, isn’t being careful at all about his blood sugar. You guys were such a help back when he had his subdural hematoma in 2007. I just wasn’t sure what to do back then, but knew something was very wrong.

      Well, I have that feeling again and just don’t know what to do. Norb used to be on this forum so often and talk about all of you. I know it helped him and I feel like I got to know you personally through him, but lately he stopped. Seems like he is shutting everyone out, but maybe its just me. Heaven knows, I understand how frustrated he is with his own body.

      I think I haven’t been much help keeping his spirits up. I’ve had my own struggles with really bad arthritis pain. Just had a hip replacement 6 weeks ago, but now need the other one done. I get pretty crabby when I’m in pain. I don’t do pain awfully unpleasant.

      When he used to get down before, I would think of some fun place we could go and off we’d be on a little road trip. We’d have a good time. He would smile again. Now, I just don’t have it in me anymore…have trouble just walking to the car.

      I contacted Dr. Weiss to see if there might be any new treatments out there. I’ve wondered if he should try the rituxan after all, or even go back on IVIG, for that matter. Maybe one of you has heard something.

      I just don’t know what to do…how to help. If you have any thoughts, I wouldn’t mind hearing them.

      I miss you guys. Maybe I will just come back here for myself for a while.


      Carol (Norb’s wife)

    • Anonymous
      November 15, 2010 at 10:51 am

      Carol – I feel so grateful to you for the up-date on our good friend. Yes, you do have your hands full with your own hip replacement issues. I have no advice to give, I am GBS not CIDP. However it sounds like both of you need a giant bear hug. You both are suffering sagging spirits. Who wouldn’t in your cases? I hope the hip gets to feeling better soon so you at least can resume your formar physical level. In the meantime – have you discussed the low spirits with both your Drs? Maybe they can help. I wish you would come here more often – post on the main forum and cidp so it will get more views and responses. You and Norb have been missed (and we worried about you). You helped others so much – now it’s time for payback. ****{huggs}}} to you both.

    • November 15, 2010 at 1:31 pm

      Hi Carol,
      Nice to hear from you. Sorry Norb is not doing well. Does Norb still have contact with Andrew? I was wondering since he had the same regimen as Norb if he has had a backward slide, and if maybe he could offer you some info. I would imagine the ivig could only help, it definately would not hurt to ask!! With diabetes and his not watching, I can’t imagine steroids would be an option. Regarding other treatments, Norb has been away for a while, so I am not sure if he is aware of how many people have seen great strides while on cytoxan. Maybe you could ask the doc about that? How are the worms? Did they make it to the new house? I am also going to send you a private message.

    • Anonymous
      November 15, 2010 at 3:17 pm

      Hi Carol,
      I wish Florida was a little closer so I could drop by and try and cheer you and Norb up. The best I can do is keep you both in my prayers. I know pain can make you cranky. Carolyn, my wife, can vouch for that. Someone once told me that pain lets you know you are alive. I notice that the very wise individual just happened to be pain free at the time.:rolleyes:

      A lot of the old timers have gone off to face book. I’ll see if I can get a link for you and Norb. Tell Norb that ever time I see a notice for a beer fest I think of him. Unfortunately I haven’t been able to go to any of then but thinking about them is sometime more fun than fighting the crowd.

      They are suspose to be putting the audio from the presentations from the November Forum on the Main Page. You may be able to find out the latest treatments from there. The Adults Stem Cell treatment seems to offer hope

    • Anonymous
      November 15, 2010 at 4:01 pm

      Hello Carol,
      I’m like Jim C, I wish we lived closer so you and Norb have your syndrome family to lean on and talk to. I am one of the “oldies” from the old forum who still comes here.

      Don’t hold anything back when you talk to Norb’s doctor, let him know the big things going on as well as the very small things that don’t seem important. Find out what treatments/medications/options can be tried. Find out if cytoxan can be tried. Some of our forum members have had great success with stem cell, but I believe you have to have no other health issues.

      Your family is here for you to talk to. Can you feel the hugs I’m sending!

    • Anonymous
      November 15, 2010 at 5:00 pm

      Aw Carol…I’m so sorry to hear things are crummy right now for the both of you. Another member here, an angel if you will, sent out an SOS on facebook. I havent posted in a while b/c my diagnosis changed. I knew for so long that ivig didnt work, things got worse and nothing helped.. asked my dr outright if I could possibly have CMT. Turns out, I do…and so does my little boy. I’m over the shock now and learning how to fight and be an advocate. One of the toughest things so far… But, I do check in from time to time for updates on my forever family. As I told Donna, Norb was one of the first to reach out to me four years ago when I felt so alone and scared with my new diagnosis of the then thought CIDP. He even sent me photo copies of his physical therapy in the mail.

      Since then, I looked up to and admired Norb…his will and determination for life but even more, the love that he has for you.

      I wish there was something I could do…say…anything. Is Norb on facebook ? you can find me there …Stacey Zimmerman …Omaha.

      Please come around..the folks here are the finest and surely this, too, will pass.

      Big hugs to you and Norb…you’re both forever in my prayers.


    • Anonymous
      November 15, 2010 at 10:12 pm

      Hello Carol,
      I just wanted you to know that some of the forum oldies are on facebook and we started a prayer chain for you and Norb.

      If there’s anyone from the old forum that Norb would like to talk to, let me know and I will try to find that person.

    • Anonymous
      November 15, 2010 at 10:50 pm

      Oh, you guys are so sweet. Here I was feeling so down and alone and just look at all of the kind (and funny…Jim) words. Thank you so much. It’s good to hear from every one of you. And yes, I do remember each of you. Even though it was Norb who did all the posting, I was always sitting nearby and he constantly kept me updated about each of you.

      Anyway, I just want to let you know that simply hearing from you has already helped.

      Just a quick update. We are living in Washington now, just north of Seattle. No, the worms didn’t move with us but we left them in a nice warm compost pile back in Ft. Collins. Yes, Norb is missing the PUB and still likes his beer. Yes we will get him a doctor’s appt and me a second hip replacement so I quit being so crabby and mean. And finally, yes, we are both on Facebook but didn’t know about you guys. Norbert is looking for each of you there as I type.

      Hugs to each of you! And thanks for the ones you sent me! I felt them.

      Much love,


    • November 16, 2010 at 5:37 pm


      Give Norb my best regards as well. I haven’t been on the Forum for awhile, I’m so glad I checked in today. I’m sorry to read about your struggles.

      Knowing your story and how happy Norb looked in front of his car; travel, adventure and giving of yourselves to others must hold a very fond place in your hearts. CIDP and your hip are restricting you from your “calling”. Maybe there’s a way you can allow someone to minister to you guys in this.

      You’re in a beautiful part of the country although the weather is harsh this time of the year. I wonder if there’s not some way you can plan or have an adventure? Something to get those juices flowing again??? Or perhaps Norb can chronicle some of the adventures y’all have had together until you are able to have your next adventure. Norb’s story website and his prose here on the Forum have been such a help to so many. I can’t help but think he has such a wealth to share he should start writing (not an easy thing for us numb fingered folks to do heh heh heh).

      Tell Norb that I’ll be checking in at the tavern and looking to hear a yarn or two. I’ll buy the first round …


    • Anonymous
      November 16, 2010 at 6:29 pm

      Thanks Gary! I read your post to Norb and yes, we are rather in the mood for a “next” adventure…as soon as my other hip is fixed. You may have inspired Norb to get back on the forum more often and leave a note or two. Thanks for your encouragment and support.

      – Carol

    • Anonymous
      November 16, 2010 at 7:30 pm

      Got an email from a member to look for this post. Norb was so helpful with me deciding on getting a special van for driving.

      I am so sorry you both are feeling down.Surgery does cause one to feel crummy–the effects of the anesthesia especially. I was reading the posts here and see IVIG came up as a maybe for helping Norb. Just last week was a national GBS/CIDP Symposium and should give us more ideas on what’s out there in way of treatment options. When folks come to this site there is always someone who is so eager and offering heart felt welcome. Norb has done that. I can only say I do hope he can get to feel better.

      What friend suggested to me was a have a sweet niece and her family come see me on my dime so to speak. I thought that was an excellent idea. Would save me from traveling and they’d have a hotel room for themselves too. I have “hired” a neighbor to drive me places–not far–but it has helped my morale. Both are great ways for me to still be “in the loop”.
      Please stay in touch.

    • Anonymous
      November 22, 2010 at 6:31 am

      Dear Carol and Norb- I’m so glad that you let us know that life is a “little'” tough right now 😮 It’s not just those pesky health issues but you have made a major move and all the “new strangeness” would set most people a little off balance until it begins to feel like home. Put on the adventure list a couple of days to check out Bellingham (my daughter lives there). I just love the place. It’s very “artsy” and the district called Fairhaven is simply delightful. Infact, when my husband finishes school after winter quarter 2011 we just might move out that way (I so want to be closer to my new granddaughter, Jaeden, and my husband will have a new granddaughter, Hannah, just before Christmas in Tacoma). I can imagine how you must miss beautiful Colorado! But we have some “wonders” out here also. Like this crazy, unexpected snowstorm 😮 Ever since Richard and I knew that you were moving out our way, we have determined to come and meet you in person – look out!! Now that we have snow on the pass it will be a while – like – into 1011 before we try that trip! Just know that we think of you often and wish for your best. U of W has some great doctors! Is that where your daughter is doing her residency? I have forgotten what her specialty is . . Spring does eventually come and then there will be fields and fields of tulips for you to see and purchase. The first time I held a bouquet that totally filled my arms ( $12) I felt so regal-ha! You will too 😀
      our hugs are filled with prayers – Judi & Richard

    • December 3, 2010 at 9:11 am


      It’s been awhile since we’ve heard from you … How are you and Norb?


    • Anonymous
      December 4, 2010 at 1:19 am

      Carol, My heart surely goes out to Norb- As a CIDP patient, a mom, a grandmother, a wife, daughter, sister, etc., I am here to say- I really do get it Norb. I understand. Up until just recently, my spirits were high. I’m not sure what is happening to me- Perhaps the holidays (we all know that the incidence of depression increases around this time), perhaps my anniversary date of my diagnosis (Dr. feels that is very important.) I’ve been crying often- partly because I just want to feel sorry for myself I guess and partly because I’m thinking about the fact that my life will never be normal as I once knew it. I’m tired of pain, tired of so many medications, tired of blood work and Dr. appointments. I feel guilty for changing the lives of everyone around me- especially my husband. I feel guilty that I can’t be a good and exciting wife, or a great mother, or a playful and nuturing grandmother all of the time. The daily symptoms are driving me batty. I feel like I ruin the “fun” at times- I can’t go here…or are too tired to go there… It’s just one thing after another. And I’m tired. Sick and tired. Tired of my power chair, tired of my AFO’s, tired of my husband having to put my braces on, having to cut my toe nails, etc….so you see Norb….YOU HAVE TO START FEELING BETTER!!! Because I am only 1 1/2 years out. I thought I would be walking and planned to give my family a special gift this year… Me walking! But it’s not gonna happen. I am fifty-two and I have nothing special to give them- after working sooo hard. I need help from all of you who can offer your wisdom….who can offer your love and understanding… your ideas, your time, an open mind, and heart. We can help one another because that’s how it’s supposed to be. So you see Norb- I NEED YOU… AND YOU NEED ME….AND WE ALL NEED EACH OTHER!!! By the way, my name is Donna and I have CIDP.

    • December 4, 2010 at 1:25 pm

      Donna, I’m 54 and I too have CIDP and I’m with both you and Norb. This SUCKS! But I have a loving family and a loving God, great friends (well met Donna), and I’ll keep working hard as long as I’m able.

      My outcome has been good physically. Although I’m tired and fatigued often; the PE and the burning/numbness/pain returns too often; I’m walking running, can cut my fingernails again … I’m blessed.

      You are so right we need each other. Thanks for encouraging Norb.


    • Anonymous
      December 4, 2010 at 2:32 pm


      Thanks for encouraging us all. I’m 68 and have CIDP [2005]. Some days your get the bear and some days the bear gets you. It’s very easy to lose site of you “blessing” on the down days. We always have something special to give; our love, thanks and patience. It may not be exactly in the form that we had in mind, but they more than happy to accept it in the form that it is.

      I have to send this quickly before my wife come into the room. If she see me telling someone to be Patience she will have a laughing fit, then give me a lecture about practicing what I preach. Patience is not my forte.

    • Anonymous
      December 4, 2010 at 8:32 pm

      Norb and Carol,

      Just wanted to let you both know that I haven’t written for awhile, but I
      do follow the threads from time to time and lately it’s been more than less.
      I’ll definately keep you both in my thoughts and prayers, Norm you are blessed
      because you have touched everyone of us. Thanks!

      Miss Judy