Mark Bray: Living with GBS
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Mark taking some steps today with a cane, and the help of his physical therapists: Marsha and Starlett.
Mark standing with help of his physical therapist and canes!What is Guillain Barre Syndrome? Click to watch video.
Mark Bray (My Brother)
Beginning in April (or before), my brother, Mark began to experience pain and numbness in his legs and hands. He started to wake up with them completely numb. He waited for some time to get in checked out. He got worse as time went on, eventually developing numbness in his toes that did not go away. He went to the emergency room on June 6th, only for them to rule out a stroke and brain tumor. We were very worried, because the feeling never returned, and they were sending him home. Luckily he had an appointment that he had made with a local neurologist the very next day. During that visit it was determined that he either had: 1) Peripheral Neuropathy 2) Multiple Sclerosis or 3) Guillain Barre Syndrome. We were really hoping it was only Peripheral Neuropathy. During the next week, he deteriorated very rapidly. Mark, myself and a friend called the office and left multiple messages in regards to his rapid decline. Four days later, on that Thursday (June 12), Mark was told by his neurologist to come in (finally). They did a nerve conduction test and it was during that test when he was told they wanted to admit him to the hospital. I had just got off work and was able to take him, he was very nervous and terrified. His first night was spent in the ICU. Guillain Barre spreads very rapidly and can paralyze the
After 5 days of infusions in the hospital.
diaphragm, making breathing impossible. From there, he would spend a week in the hospital, and have several MRIs of his spine and brain. He was told they found 2 spots on his brain at that time. On Saturday, June 14, we were told that he had Guillain Barre Syndrome.
His microbiology teacher was nice enough to come see him several times. She actually explained the syndrome to him and us a lot better than any of the neurologists had. The only thing Mark knew about it was that it was an auto-immune disease. Many people have never heard of it. It affects about 1-2 people per 100,000. So what is it? Guillain-Barre syndrome is a serious disorder that occurs when the body's defense (immune) system mistakenly attacks part of the nervous system. This leads to nerve inflammation that causes muscle weakness and other symptoms. It can causes muscle spasms throughout the body, including the face.
diaphragm, making breathing impossible. From there, he would spend a week in the hospital, and have several MRIs of his spine and brain. He was told they found 2 spots on his brain at that time. On Saturday, June 14, we were told that he had Guillain Barre Syndrome.
His microbiology teacher was nice enough to come see him several times. She actually explained the syndrome to him and us a lot better than any of the neurologists had. The only thing Mark knew about it was that it was an auto-immune disease. Many people have never heard of it. It affects about 1-2 people per 100,000. So what is it? Guillain-Barre syndrome is a serious disorder that occurs when the body's defense (immune) system mistakenly attacks part of the nervous system. This leads to nerve inflammation that causes muscle weakness and other symptoms. It can causes muscle spasms throughout the body, including the face.
Mark had issues with the nerves of the face, and had trouble keeping his right eye open. The neurologist said this is very common.
Mark was discharged from the hospital on June 19, 7 days after being admitted, 5 days of which he received IVIG (immunoglobulin) infusion treatments to stop his immune system from attacking itself. He felt okay, but was very worried about what was to come. He stayed with me for a week and a half. Though I didn’t want him to, I knew he really wanted to be at home. The nurse determined that he was safe to do the basics of caring for himself. He went home shortly after. He had issues with us and his friends seeing him use a walker at the age of 30. Even one of his first visits to his neurologist’s office after the diagnosis, he ran into two people that he had graduated with. It's very hard for him to go out in public, newly disabled. He is doing a lot better with that now. During the illness he has racked up medicals bills and living expense bills that were not covered by short term disability of around $4,000 or more. Everyone has been so great. Friends and family have been helpful and have assisted a lot with taking him to his physical therapy appointments and doctor visits. We are thankful for their kindness. In an attempt to keep his medical bills from going to collections, Mark applied for two financial assistance programs, which denied him because he did not "qualify." He is still using a walker, and has physical therapy three times a week now. They work his legs, feet, hands, and arms. He is also going to aqua therapy and is able to walk with very little assistance in water. He has some IVIG infusion treatments coming up, and hopefully that will assist him more with the continuing numbness and help with him gain more strength. He is one of the best and most caring people I know. He is not one to ask for help, but I know he needs it. He is also in need of encouragement, so if you would like to send well wishes, please send them to:
Mark Bray
PO Box 160303
Boiling Springs, SC 29316
Everyone please SHARE, and THANK YOU very much for helping someone that is always willing to help others.
-Danielle
Organizer
Danielle Bray Forbis
Organizer
Boiling Springs, SC
