Anyone want to help an occupational therapy student?

    • Anonymous
      April 30, 2007 at 3:45 pm

      Hi everyone.

      I’m an occupational therapy student and I’ve been so fortunate to find this site – your ongoing discussions have been such a valuable resource as I learn about helping people to manage life with GBS.

      In short, I’m looking for someone who would like to do a short interview about GBS for a neurorehabilitation presentation to my peers. If you are interested, I can e-mail the questions to you and you can email your answers back.

      Thanks in advance,
      Becky Ankerberg

    • Anonymous
      April 30, 2007 at 7:51 pm

      [B]beckyankerberg>[/B] I will do an interview with you but I have to tell you that everyone’s situation is different. You would be better to post your questions to this forum and have them tell if they have GBS or CIDP plus any variants. That way your presentation would be more accurate. ๐Ÿ™‚

    • Anonymous
      April 30, 2007 at 9:25 pm


      You are more than welcome to call me, my telephone number at home is 703 365-8231, and that would be eastern time.
      Just as Lady Kit said, we are all different, but I think our OT needs are pretty much the same… to deal with each day in the best way possible. In fact, my my doctor suggested last week (21 years post GBS) that we should try and get a OT involved to try and make my daily living more manageable. Having said that, today is an ‘up’ day, and I feel like I can conqor the world …. and I hope that lasts as long as possible!

      I am so glad there are people who are trying to help the peripheral neuropathy ‘people’ out a little more. ๐Ÿ™‚

    • Anonymous
      April 30, 2007 at 10:27 pm

      [B]Hi Becky,

      I am in total agreement with Kit about posting your questions here and you will get so many different answers. GBS and CIDP are so very different in the many patients you will find here. We try to tell the Drs that they need to get their noses out of their text books because of the many different ways GBS and CIDP affect patients. There are no text book answers, just true statements from the patients themselves.[/B]

      I am sure that everyone here will like to participate.

      The Best Of Luck in school.:)

    • Anonymous
      April 30, 2007 at 10:32 pm

      Becky, My pt therapist used me as her subject and I was honored to even be asked. I also wrote letters to her Dean and Professor. They ended using her Paper at a State convention. She really had her heart in her study. Good luck and Ali would be a fantastic subject.

    • Anonymous
      April 30, 2007 at 11:35 pm

      Hi Becky: I owe a great deal to my ot and pt and would be happy to answer any questions you might have. You can send a private message to me on this site if you choose. Jeff

    • Anonymous
      May 1, 2007 at 7:27 am

      No worries, if you want to contact me via private message or yahoo, i’d be happy to help ๐Ÿ™‚

    • Anonymous
      May 1, 2007 at 11:39 am

      while I am new here, I’m not new to CIDP! Wish I did not have it tho.

      PM me please.

    • Anonymous
      May 1, 2007 at 7:47 pm

      [quote=Brandy]I am in total agreement … you will get so many different answers. GBS and CIDP are so very different in the many patients you will find here.:)[/quote]

      I agree 100% with that! I’ve talked to so many others with Guillain-Barre’ and Cidp who’ve had such a wide variety of recovery rates and varying amounts of residual effects that it’s almost impossible to compare and contrast experiences.

      It’s wonderful that you are looking to inform the healthcare community about specific OT-related issues for those with GBS. Perhaps you can also use the information you gather to educate other professionals that [B]this disease can express itself quite differently in each person.[/B] That alone would be a huge help since I’ve heard literally [I]hundreds [/I]of GBS/Cidp stories in the past 5 years and, as amazing as this sounds, I would be hard-pressed to classify anyone on this board as a “text-book case.” ๐Ÿ˜Ž

      I don’t want to scare you off because GBSers NEED caring, interested OT’s & PT’s who want to learn more about living with the after-effects of this hideous disease. If you get overwhelmed, just please – if nothing else – tell people in your field that [U]variation is the norm[/U] in GBS and there is really no “standard” when it comes to OT care in recovery. There is nothing more frustrating than being told you should be at a different level of recovery because of what someone read in a textbook.

      Thank you!!! ๐Ÿ™‚

    • Anonymous
      May 4, 2007 at 5:47 pm

      Thanks so much for all of your very informative replies! I did get an interview from someone, which is extremely helpful in addition to several of you who said that there is no “normal” progression of symptoms for GBS.

      I will pass this information along to my fellow OTs so we can learn to provide individualized, quality care for persons experiencing GBS. So… thanks! God bless you all as you push through and continue living lives of purpose and meaning despite the challenges you’re each facing day by day!


    • Anonymous
      May 4, 2007 at 6:49 pm

      Welcome, Becky,

      If you still need inteviews. I’d be happy to do that. Please PM me, either with your questionaire, or let me know if you’d like to do a telephone interview.

      It’s wonderful to have a PT student interested in how to appropriately treat GBS or CIDP patients. While as others have said, each patient is different and these syndromes often have varied problems, one thing that all have in common is that recovery needs to balance enough activity to keep the muscles strong, with moderating the amount and type of activity so the nerves are not overworked.

      Thanks for your interest and best wishes for a successful career in PT.