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Miles' GBS Story

My experience with Guillain Barre Syndrome while frightening, or more like terrifying, to me and my wife, it probably was not as bad as most. Praise God.

I was diagnosed in February 2025. After a battle with RSV my body decided I hadn’t had enough and thought GBS would be a nice way to finish the month. I “fell off the cliff” pretty fast. Starting with a lisp, almost like a speech impediment, that got progressively worse very fast. Then I found I could not swallow, that was terrifying, and then I became very weak. It got to a point where I could not get out of a chair. That’s when the emergency room happened. At first it was thought I was having a stroke. My wife was translating what I was trying to say to the doctors because my speech had gotten so bad. Long story short and many tests later, (CT scan, MRI and Spinal Tap), and a ton of blood tests later (I stopped counting at 16 vials), it was determined I had Guillain Barre Syndrome. I had never heard of it and what I was reading was terrifying.

When I began IVIg treatments, things slowly started to turn around. My neurologist, doctors and nurses were amazing every step of the way. After seven days in the ICU, I walked out with a cane and headed home. I can honestly say I feel blessed.

That’s not to say it’s been easy. I still get nerve pain here and there, I wrestle with anxiety, and the chronic fatigue can be crushing. That’s the part that wears me down the most. But even with all that, I know how lucky I am, because it could have been so much worse.

MY GBS is a mix of two variants – Miller Fisher and another one the doctors told me about, although the name didn’t stick. At the end of the day the label doesn’t change anything. It’s still GBS, and something I’ll always carry with me. What matters most now is hoping it never decides to come back.

The Challenge

So all that being said about my experience… I decided that I was truly blessed. I did not have to worry about the expense of certain things needed for the recovery process, a cane, comfortable chair to try to sleep in when the nerve pain hits, or in a lot of cases a walker or wheelchair. Often there is need for physical therapy as well. Nope, I was fortunate. I had a cane for a couple of days, and my wife bought me a comfortable chair. So, now I really feel the need to help those who need the help. Those who might not be able to afford some of the vitally needed tools to recover, and get the care they need.

As a very experienced bicycle racer in the past, long past, I have made the only logical decision there is to make. Buy a quality bike and ride up Mount Ventoux in France on or about August 24, 2026. This is an “epic” climb of approximately 26 km, (16.2 miles). Did I mention its ALL up hill? Mt Ventoux summits at 6,263 feet. It is known as the “Giant of Provence”. It is also known for its barren and windswept summit. I have been there in a car and it is unique to see. Mt Ventoux has most recently been made famous for its inclusion in the Tour De France. It has gotten the best of many of the worlds most famous racers.

The Team

I am being assisted by two invaluable partners. The first is my wife, Cindy Washburn. She is keeping me motivated and well nourished. When she offered to be my nutritionist I jumped at that offer. She is doing an amazing job. The other key player is my former cycling coach from back in my racing days, Bill “Bike Guy” Humphreys. His years of knowledge, mentorship and experience are invaluable to me in this endeavor. I fully trust them both to get me to the summit so we can raise funds and needed awareness for Guillain-Barre Syndrome.

Wife, Cindy Washburn

My asks are this...  First, please donate. Donate for those who are stricken by this terrible Syndrome and need the financial help to get through recovery. The GBS|CIDP Foundation is generous, but as this is a widely unknown auto-immune syndrome, the Foundation desperately needs all of OUR support. Second, please forward this to anyone you feel would help.

I am privileged to work with the GBS Foundation, and especially with you to bring more awareness about GBS and to help provide for those in need with Guillain-Barre Syndrome. 

Coach Bill placing second at the UCI
Championships at 80 Years Old

Bill "Bike Guy" Humphreys

Thank you in advance for your support – 

Miles 

How can you help?

About the GBS Emergency Relief Fund

NORD's Guillain-Barre Syndrome (GBS) Emergency Relief Program opened with a donation from GBS-CIDP Foundation International. The National Organization for Rare Disorders(NORD) recognizes the burden that managing a rare diagnosis places on a patient and their family.

This financial burden may impact a patient's ability to afford unexpected or emergency essential (non-medical) expenses. The GBS Emergency Relief Program is designed to provide limited assistance to eligible individuals in such circumstances.

Give

Your gift will support awareness for GBS and the GBS patience assistance fund.

About the Foundation

The GBS│CIDP Foundation International is working for a future when no one with Guillain-Barre syndrome (GBS), chronic inflammatory demyelinating polyneuropathy (CIDP), and related syndromes such as multifocal motor neuropathy (MMN) suffers alone and that everyone has access to the right diagnosis and the right treatment, right away.

Our commitment is our story. It all began with eight people sitting around a dining room table 30 years ago. Through the hard work and determination of our Founder, Estelle Benson, the Foundation grew larger and has become able to support thousands of patients, family members, friends and caregivers. The Foundation is committed to continuing to provide the experience of care and support so indicative of the original grassroots mission.

Your support changes lives.

For more information about sponsorships: Contact Miles Washburn, mcwashburn@earthlink.net  and Kaitlyn Ide, kaitlyn.ide@gbs-cidp.org