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//Tips for newly diagnosed with GBS.

Tips for newly diagnosed with GBS.

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By |2018-11-29T15:33:14+00:00June 9th, 2017|2017|14 Comments

About the Author:

Author of Happily Ever After - My Journey with Guillain-Barre Syndrome and How I Got My Life Back.

14 Comments

  1. Anonymous June 7, 2018 at 11:50pm06 - Reply

    I was just diagnosed with GBS last month (ironic it was gbs awareness month! ) I have shared this page with friends and family because I cant always think of the right words to describe what I am going through. Thank you for your story and the hope you have brought me

    • hollyaftergbs June 9, 2018 at 11:50am06 - Reply

      Hope you are doing ok! GBS is so scary and life changing. But you are not alone! If you ever have any questions just let me know 🙂

      • Anonymous June 10, 2018 at 11:50am06

        I just bought your book on amazon! I will definitely be reaching out to you. Today was spent in tears from the pain. I have good days and really terrible days. Its crazy how I was fine yesterday, did pt and other stuff and I can barely move today…..ugh

      • hollyaftergbs June 10, 2018 at 11:50pm06

        Yes you are going to have bad days, for a while, but I promise they will get farther and farther between. Things will get better, you are still very early on in your recovery.

  2. Grace January 1, 2018 at 11:50am01 - Reply

    Thank you for sharing. My husband was diagnosed with GBS on the 17th of November. We stayed in the hospital for almost a month and decided to go home since he can breathe on his own and he felt depressed looking at the 4 corners of his room every day.

    • hollyaftergbs March 29, 2018 at 11:50pm03 - Reply

      I don’t blame him!!! I almost left the hospital as well but then I got into a rehab hospital. But I did leave that early because I just couldn’t be away from my baby anymore. Hope your hubby is doing much better !!

  3. Shirley July 11, 2017 at 11:50am07 - Reply

    I wish medical professionals would read this article, especially the paragraphs about the pain and sensitivity! They can’t understand, as it is outside their realm of experience and there is nothing to compare it to. I was on heavy pain meds, they didn’t take away the pain and intense itching. I was told to just distract myself, once I was moved to the rehab hospital for 3 1/2 months. They just don’t know.

    I love that you wrote this! There is so little information available, even from hospital staff, while it’s happening.

    Saw your video on YT, found it very inspirational. I am mobile again but still have some mild paralysis on the right side, including my face. The face is what bothers me the most. It seems to have stopped improving but after seeing the energy you put into your recovery and the great results, my resolve to keep working at it has returned!

    Thank-you!

  4. Dr Virendra solanki June 22, 2017 at 11:50am06 - Reply

    Hey.. Myself Dr Virendra from India. I am a pediatrician. I have seen some GBS kids in my hospital. And I know this disease is very dangerous. Seeing a GBS child is like heart pounding feeling… Plz tell me about your GBS foundation and it’s activities.

    • hollygerlach July 26, 2017 at 11:50pm07 - Reply

      THe GBS foundation information can be found on their website. They provide support to GBS patients, and also do funding towards research. I cant imagine dealing with children having to go through this terrible disease. Thank you for all that you do.

  5. Lisa G June 11, 2017 at 11:50am06 - Reply

    This is fantastic Holly! I am a nurse in the ICU where you were admitted. I actually never took care of you personally as I was only casual at the time and worked only 4 or 8 hr shifts. I spoke with your family a lot and held your baby girl a couple of times. I did assist a few times with turns, lifts and mobilizing and it was a real learning experience for me as well. I read your book and continue to read your posts. I have learned so much from your story and hope that I can be a positive care giver and more empathetic nurse when taking care of our GBS patients. Thank you thank you thank you for sharing everything you have shared over the past years. No nursing text book could ever have prepared me for taking care of patients in situations like yours.

    • hollygerlach July 26, 2017 at 11:50pm07 - Reply

      THank you so much Lisa, that means so much to me. I am so happy that my story is helping nurses to better understand GBS patients 🙂

  6. Janet Lankford June 10, 2017 at 11:50am06 - Reply

    My husband was diagnosed with gbs in March 2015. He was 61 yrs young, we were married for 41 yrs. I did not know anything about this. They did ivig treatments, he would flat line when he was moved. So they gave him a pacemaker. The ivig treatments did not work they were going to the blood cleaning but no one would do it. It was so sad to watch this and not knowing what to do next. I didn’t know that when I hugged or kissed him that it sent electric shock throughout his body. I felted helpless. I tried everything to no avail. Well the time came when I had to make a very important decision bc his organs were shutting down his blood pressure was 60 over forty. The Dr came in and said that I had to make the WORST THING in my entire life and was to take him off life support and call in hospice. I ask him if he was ready to go and he nodded his head yes, I said to him that I don’t think I can make this please don’t make me do this tears came down his face and I knew he wanted me to do this. So with all the strength in my body I said yes. Went home and called them and said I cannot do this, but I was thinking that he was in such pain that I had to do this. So on August 18, 2015 my husband passed away. I love and miss him so much.

    • hollygerlach July 26, 2017 at 11:50pm07 - Reply

      Janet my heart is breaking for you. I am so sorry that you lost your husband to this awful disease. While I know nothing I say can bring your husband back, I do hope that you have found some peace and have been able to live your life to the very fullest in some form now. Life is so short 🙁

  7. Anonymous June 9, 2017 at 11:50pm06 - Reply

    Well done, Holly!

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