Any survivors in the Kansas City area?

My brother was diagnosed in early October with GBS and just today got his trach out for the first time. We are looking for someone who has made it through this to maybe come visit him to show him that there is hope on the other side and that he will get there eventually. I think it would be a great encouragement to him to meet another survivor who knows what it is like and has recovered from GBS. Are there any organizations that connect people like this or do you know someone who might be able to make such a visit in the KC area? Thanks!

My son James who turns 19 this month is now doing outpatient therapy at Children’s Mercy Hospital KC 3 days a week as well as OT and Psychotherapy appointments to help him cope.His GBS started last February 2015 with an upper respiratory infection-2 doctors completely missed it and one even said he was making it up.We were on our own until his Endocrinologist suggested a doctor at Children’s who within 25 minutes figured it out.My son was receiving pt but from Centerpointe and it wasn’t the right kind so he was getting worse.Im happy to say that he is doing much better but still needs a wheelchair to get to therapy to conserve his strength but uses a walker at home.I know he has anxiety because he struggles with decisions everyday but they say he should be up and going by August but it’s really one day at a time.My son misses his friends and going to college but we hope to change that this year.I have tried to get my son to reach out to others with the GBS but I feel in some ways he’s still coming to terms himself.I will keep you both in my prayers and will hope to hear more from you even if it’s just to talk,I have shed many tears this last year and it’s a hard situation for others to understand since they have never watched someone they love go through it.

Hi Jessica,

Sorry to hear about your brothers situation and hope that he is progressing and has a little hope. I assure you that the struggle is real, and there are no real support groups in the Kansas City area to speak of. For someone who has never dealt with this "syndrome" they really have no way of understanding the pain, the psychological aspects, depression and anxiety involved. I can make these statements because i had recently experienced them and consider myself a survivor. let me give you a little background on myself and the syndrome. On November 29th of 2015 i was a healthy 52 year old male Air Force combat veteran in really good shape that exercised regularly, provided for my family and had a deep belief in Jesus. On the morning of November 30th, 2015 that would all be challenged and I knew my life would probably never be the same. After having minor cold symptoms for about 5 days prior i awoke that morning with a severe pain in the middle of my back. Ordinarily i would shrug any kind of pain off and go to work as i did everyday for for 30 years. This pain was different than any i had ever experienced and luckily my wife made me go to the emergency room at St Lukes north on Barry road. They diagnosed me with an upper resperitory infection and sent me home. After arriving home i decided to take a nap thinking it would all pass. I woke up an hour later and went to get out of bed when i collapsed and could not move anything but my arms. My wife then took me back to St Lukes north emergency room where the struggle soon began. For the sake of not making this discussion reply a two day reading event i will give you the short version. I was transferred to St lukes on the plaza where i was diagnosed with GBS. My condition had rapidly advanced and i was suddenly faced with paralisys from the neck down. I was then transferred to Kindred north which is an Ltech facility north of the river. It was there that i got a trachiotemy and put on a ventilator. Shortly after that i was put on a feeding tube. I then went into a coma for 2 days and experienced things that only people that have passed away and then returned have experienced. Luckily the "globin" treatment started working and alot of peoples prayers brought me back. For anyone who has ever awaken to find themselves on a ventilator, paralyzed , a feeding tube and all there loved ones crying is an experience not soon forgotten. I then found myself being so medicated that i was seeing really strange things. The level of the health care at Kindred north was terrible and an experience that i would not wish on anyone. The level of healthcare at kindred was as bad as the gbs itself. My wife then pulled me out of there and admitted me into North Kansas city hospital. It was this move that saved my life and put me on a road to recovery. I spent several weeks on the sixth floor recovering. Then on January 4th, 2016 i went to the 4th floor acute rehab facility where i spent the next 4 weeks working with physical therapy and occupational therapy. I was determined that i would walk again and not let gbs beat me. On January 24th 2016 i was lucky enough to be able to walk out of North Kansas city hospital. (even though you have to be taken out in a wheel chair). I had to use a walker for several weeks and now i am walking with just a cane. I have taken the workout regiment that i used at NKC hospital and am following it religiously at home. I work out twice a day for an hour. It includes the hand weights, yoga, stretch bands, bicycle and treadmill. I am far from healed as i still have leg pain, numbness, tingling and shortness of breath, anxiety and sometimes depression. I still have a great relationship with the rehab unit at North Kansas City hospital and have been back several times to talk to patients with GBS. I do not know your brothers circumstances but please let him know that there is hope. If he needs someone to talk to I would be glad to talk to him whether it is via the telephone, email or in person. There is not enough resources in this country for the support of GBS. I am planning to start a support group in Kansas City where people with the syndrome can help other people with the syndrome cope. Because we know, we have and are experiencing what others are experiencing. I am located north of the river by Zona Rosa and yes God bless your brother and his family because it is hard one everyone involved.

I hope you find someone. The first thing I looked for when I got out of the hospital was a support group. Depending on others to dress you, bathe you, get you on and off the toilet, etc can be very depressing. As for myself I was in the hospital for three months, in a coma for 5 weeks, on a ventilator for six weeks and left the hospital in a wheelchair. I’ve been out of the hospital now for almost 5 months and I’m now walking with a cane. It takes patience and keeping a good schedule of therapy but there is light at the end of the tunnel.