Guillain Barre Syndrome

GBS-CIDP Awareness Month – Chat with Jeremy Oster

If there’s one thing about life, it’s that it’s unpredictable, right? Just when you think things are going well, something happens that throws a wrench in the works. Or, just when things seem to be at their most bleak, a ray of sunshine peaks through the cracks and you get a sense that somehow, things are going to work out. You may not how, or when, but ultimately hope is what can carry you through some of the darkest times of life’s struggles.

That’s one of the main things that living with Guillain Barre Syndrome has taught me; that life is unpredictable. Well that, and if I’m going to get better, I need to take a proactive approach, rather than a passive one. Sure there are aspects of recovery from any disease or condition that are out of your hands, but by in large, there is usually something you can do to help yourself keep moving in a positive direction.

May is GBS-CIDP awareness month, and what better way for us to help do our part here on the podcast than to talk with a fellow survivor of this rare disease, and get his take on his experiences during diagnosis, treatment, and how life has changed for him since.

Jeremy Oster reached out to me a couple of months back, when he was looking for connections to other survivors of GBS, and came across the podcasts I recorded about my experience. We chatted through email and on the phone, swapping stories, struggles, things we’ve learned along the way of our healing; and I thought it would be cool to bring him on the podcast to continue our chat during GBS-CIDP awareness month.

Jeremy was like so many before the onset of GBS; married, children, successful career in both technology and sales, and while he had his share of struggles personally and professionally, he was primarily living life the way so many of us do each day. Then out of the blue, everything changed, and ever since his life has taken on a new normal in a way he could have never imagined.

During our chat:

  • Jeremy breaks down what exactly GBS is, and what it feels like to live with it each day both physically and emotionally.
  • He shares what his life was like on a daily basis, an what happened just before Guillain Barre set in.
  • The importance of moving past “how did I get GBS” and focusing on “what am I going to do about it”.
  • The toll this disease can take on a spouse and family, during treatment, recovery, and life afterward.
  • Finding your new normal, and approaching life with the right mindset so you can be proactive in your healing, rather than just resigning yourself to what you think will never change.

If you’d like more information on this rare disease, related conditions and variants, treatment options, and how you can help support research, please head over to GBS-CIDP.org, the official foundation website to see how you can get involved.

To check out my other podcasts on this topic, check out “The Diagnosis that Changed My World“, and my “One Year Later Update Episode” .

 

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All conversation and information exchanged during participation on the Beyond Your Past Podcast, on BeyondYourPast.com, and BeyondYourPastRadio.com is intended for educational and informational purposes only. Nothing on these podcasts or posted on the above-mentioned websites are supplements for or supersedes the relationship and direction of your medical or mental health providers.

Guillain Barre Syndrome Recovery, One Year Later – Ep. 121

Every podcast episode and every incredible guest I have the pleasure of speaking with is special and amazing. I’m truly honored to be able to hang out with you for awhile each week and share the stories of people from all walks of life, who’ve overcome incredible hardships, traumatic pasts, and difficulties that many could never even imagine; in hopes of inspiring and encouraging us all to continue our own journey’s.

This episode is especially personal to me, and one I’ve been looking forward too. This time, exactly one year ago, I was in the early stages of my recovery from Guillain Barre Syndrome. A disease that came out of nowhere, and one I had never heard of before and ended up changing my life forever.

I originally shared my experience with GBS, in February 2018, in episode #58. That podcast took me quite a long time to record and the blog post even longer to write since it was right in the early stages of healing and I was still coming to terms with what happened. Still, I was compelled to write and speak my story as best I could, mainly because that’s one of the ways I cope with things of this severe nature. You can check out that episode and detailed blog post, here.

During the last year, I’ve spoken to a handful of survivors of Guillain Barre Syndrome, and participate regularly in some Facebook groups full of survivors of GBS or CIDP (Chronic Inflammatory Demyelinating Polyneuropathy) who all have varying experiences with this disease and its variants. I’ve kept in contact with some of them regularly, and inparticular with a person I invited to become a guest with me here on this episode, Mary Catherine (MC).

MC is the Founder and CEO of Coffee and Cocktails with MC, a nonprofit organization whose mission is to help promote, represent, and support local, family-owned, and small businesses through a variety of media and social opportunities, to help further their exposure. She is also a blogger at MyBlindLife.com, where she documents her new-normal life as a wife, mother, small business advocate and survivor of  GBS and a medical incident that left her visually impaired. 

MC and I talk about our experiences with Guillain Barre, from how things were before the disease hit, how we both contracted it, our treatment experiences, and the ways we’ve worked through recovery since.

We talk about how much we’ve learned and the attitude and mindset we’ve had to embrace in order to heal from this dreaded disease.  The struggles, the wins, and everything in between have helped shaped our individual lives since and also helped to give us a message to share with others. As you’ll hear, and if you’re a listener of this podcast you know already, the power of sharing your story can be an amazing means of inspiring and validating. It’s something I try to embrace, and MC also is a big believer in finding ways to use her experiences to help others.

I hope you’ll enjoy this episode, and take heart in knowing that throughout the recovery from this ordeal, one of the similarities you’ll hear is that during healing, it’s important to surround yourself with a good support system, both in person and online. The power of support is crucial to healing and whomever you can get to help you, virtually or otherwise, will make things so much better…especially during the dark, difficult times that will inevitably come but will also give way, in time, to new possibilities and hope.

Be sure and check out Coffee&CocktailswithMC to learn more about the work MC Derin is doing and the ways she is using her experiences to help others.

-Matthew Pappas, CLC, MPNLP

Guillain Barre Syndrome Survivor.

 

 

 

 

 

 

 

All conversation and information exchanged during participation on the Beyond Your Past Podcast, on BeyondYourPast.com, and BeyondYourPastRadio.com is intended for educational and informational purposes only. Nothing on these podcasts or posted on the above-mentioned websites are supplements for or supersedes the relationship and direction of your medical or mental health providers.