The Faces of Guillain Barre 2017: Day 20- Melvin Joe

Saturday, May 20, 2017 0 Comments

Hello! I am writing you to tell my Dads story about his experience with Guillain Barre.

He was 47 years old (spent his 48th birthday in the ICU,yay) when he was diagnosed. He had the beginning stages of RSV for about a week and On December 27th 2016 he woke up with tingling legs and hands/arms.  He tried to stand up out of bed and just fell over, he was able to get to his cell phone and call me so I went ahead and called an ambulance to go get him. They had him in the ER from about 9am til the afternoon the next day when they moved him to a room. By the time I went to see him the next day he could barely raise his arms, couldn't raise his legs and had very labored breathing. They had him on the stroke floor, and were running test after test to try to figure out what was wrong.

Before GBS

 They were thinking he had an acute stroke at that time. Another day went by and his health and mobility were quickly deteriorating. He had to be placed on a respirator and couldn't breathe on his own and at this point could just move his fingers. The next day, no movement at all, he was paralyzed from the neck down and he stayed this way over the next months.

During the first 2-3 weeks he was given every test you can think of, I was asked the craziest of questions about his lifestyle, what he ate on a daily basis, if he planted and canned his own food, if he was on drugs, an alcoholic, the list goes on... I got so many "diagnoses" I didn't know what to think. They said Stroke, Sepsis, MS, other odd and rare diseases. It wasn't until 3 weeks later a Doctor called me and told me they think he has Guillain Barre. The magic words that changed it all!

They started him immediately on IVIG but it didn't help, nothing changed. Fast forward a month after being admitted in the ICU. He had a trach put in, and had a stomach tube put in and the tube in his nose taken out. They had started him in another 5 day course of the IVIG treatment at a higher level to see if we could get some improvement. Guess what! 2 days after the course was complete he was able to wiggle his hands. He was so excited and you could see how proud he was. He started going over to the cardiac chair, and doing range of motion exercises with the physical therapy.

In the cardiac chair

He wanted this frosty for so long.

Feb 14th he was able to lift his arm on his own, baby steps but big steps! Feb 20th he has been able to keep a speaking valve on his Trach, started paperwork to move out of the ICU. Day 57: He is out of the ICU! He was moved to a step down unit.

Day 65 he was transferred to a Rehabilitation Hospital for extreme physical therapy for the next 3 weeks. Day 84: He was able to get his trach out and come home. He was wheelchair bound. Now he is on Day 119!

He has worked his way up from the wheelchair, to the walker, to walking solo. He still has issue with his feet burning and not 100%. He can walk around for a few minutes before having to sit down or go back to his chair.

He still has a long way to go but he is doing great now and so happy to be alive and (somewhat) healthy. He lives at my house with me and spends all day playing with his grandson and his new dog which he adores. And is still getting better every day!

He is 48 years old.
2 kids. One daughter 22(me) and One son named Joseph (21)
He has one grandson that is 3 years old
He had 2 rounds of IVIG, no more planned