Just want to say "Hi"

Just wanted to welcome you, you sure have been through alot. Sounds like you have a wonderful caregiver in your fiancee. We are glad that you found us, please jump right in and make yourself at home. If I can ever be of any help feel free to contact me. Take care and keep healing.

Jerimy Schilz

Hi Elaine,
Hang in there. I can’t tell you if it will get better or not. Everyone has different experiences. What I do want to tell you is that I am a member of a Royal Scottish Country Dance group. The really neat thing, is we have dancers who are professionals, dancers that are average Joes, dancers that have NO rhythm, dancers that are in theri 80’s, and dancers that are disabled. They do what they can, and enjoy moving to the music and remembering the patterns. I will look up a link for your area and pass it on.

Blessing on you
VMac

PS
I found a website for you. rscdsorlandobranch.org
They have links to scottish country dancing all over Florida. Give them a look. For me it was a great form of both physical and mental therapy.

Elaine, Welcome and warm wishes for a great recovery! I love to dance too! And in the years post GBS, I have had to marvel that sometimes I can with alittle effort and sometimes it is nearly impossible. But I can always chair dance!
And I cetainly understand what you mean by other issues. But remember where there is a will there is a way!
Sounds as if your fiance has been a wonderful helpmate for you. I too had a great fiance during my recovery. He actually proposed to me while I was in hospital. We waited several years to marry, as I wanted to walk down the aisle.
And if read through some of the posts you will see that time and rest are our biggest allies!
My best wishes!

Dear Elaine,

Nearly 10 years ago on Dec. 26th, 1996, my life as I knew it, changed forever when I collapsed in my bedroom with paralysis in my legs. Within 3-4 days the paralysis began to move up my body. My breathing muscles were paralyzed, I couldn’t swallow, I had a feeding tube inserted in my stomach, and I found myself totally paralyzed. The only muscles in my body that worked were my eyelids. I had a tracheotomy and was hooked to a respriator that breathed for me, and my condition would become worse. I had GBS, but was misdiagnosed and did not get either treatment of IVIG or plasmapheresis.

Within days of my hospitalization, word had spread of me being paralyzed and having some kind of illness. But, nobody, other than my family and a few close friends really knew how ill I was. Then, on January 9th, 1997 my temperature climbed to 107.9, my blood pressure dropped to 44 over 0 by Dopper (wouldn’t register by cuff), Guillain Barre syndrome (not diagnosed), I had another neurological disease, Transverse Myelitis (not known at that time), I had a blood staph infection (Staphylococcuss Aureus, but the exact type infection not yet determined), pneumonia, internal bleeding (source unknown), I was on total life support, I was in a coma, and an EEG (brain scan) had just been completed that showed no activity.

The doctors told my wife, Rosemary, and our two sons, that everything medically and humanly had been done, but there was “no hope.” Then later, Rosemary was told to “make arrangements for a post-mortem” so they would know what killed me. She was also told that “had I survived”, I would have been severely brain damaged because of the high temperature and low blood pressure for such a long period of time. This was in the early AM hours – In other words, “Rosemary….We don’t know of anything else to do, and we plan to pull the plug — so make the arrangements.” Now, after doing over 9 years of research on GBS myself, I know GBS can, in severe cases, cause absent brainstem reflexes (and I seriously doubt the doctors knew that, because they didn’t even have me diagnosed with GBS). In fact, the EEG brain scan probably influinced the decision for a post-mortem.

But Rosemary did not make those arrangements. Instead, Rosemary called our pastor. When he arrived, my family circled my bed and prayed for a miracle. I was spared by the grace of God. My vital signs started to slowly improve…and over the next 24 hours my temperature dropped and my blood pressure stabalized.

I was transferred from the hospital to a Rehab Center on Janunuary 30, 1997 – Still totally paralyzed, and on a respirator – I was alive…but barely. I was a very, very sick man. When you’re totally paralyzed, trapped insided your own body, time can become an enemy – Often, all alone late at night, and in so much pain I couldn’t sleep, I would watch the second hand on the clock make it’s tortuously slow cycle, round and round, over and over. It was a dark and dismal time in my life, and God seemed so far away.

I would often ask, myself, “Where is God?” My thoughts were, go to God – Knock and the door will open. I prayed several times during the day. Each morning, then later with my wife Rosemary. Every evening my sister, would visit me, and we would pray together – but I was looking for immediate results. It seemed like I was knocking at the door, and was hearing, “Nobody home.”

I was totally paralyzed, in the worst pain in my life, and I needed God’s help. Why would God seem silent, and not answer my prayers, or deliver me from my pain and burden?

Some people would say it’s because I have a lack of faith. Older and wiser people would say to look in the Old Testiment. Job said in (2:10), “Shall we receive good at the hand of God and shall we not receive evil?” Or should we accept only the good that comes from God and not accept adversity? There are two things I learned from Job – Nobody is exempt from God’s challanges – And adversity will find most of us at some point in our life.

Jesus confirmed this in John 16:33. He said “In the world ye shall have tribulation; but be of good cheer; I have overcome the world.” – In this world you shall have tribulation – meaning to endure pressure, affliction, anguish, persecution, trouble and heavy burdens….but be happy, because – He has overcome the world. As believers, the tribulations we endure while in this world, will become cheerful because of the hope that we have in Him. We know all our tribulations will turn to joy the day we are called away to be with Him again.

10 years ago God’s grace came to me by way of prayer – when doctors gave up hope – when my wife was told to make arrangements for a post-mortem…God’s grace came to me! God’s grace is His gift of the Holy Spirit to believers!

Certainly my wife, Rosemary, has always been the most supportive rock in my life. For over 41 years (10 of which, I’ve been severely disabled), she has been steady, faithful and supportive. In fact, without Rosemary’s firm, decisive – and only as Rosemary can make her decisions known, because there were at least 2 times I would have probably died. I actually owe my life to Rosemary….

After researching GBS, and after telling my doctors what I thought was wrong with me (CIDP), that I needed treatments of IVIG, because of an extreemly slow recovery in my lower extremities, I finally made my own appointment with the University of Louisville Neurology Department, and was diagnosed with a chronic type of GBS called CIDP: Chronic Inflammatory Demyelinating Polyneuropathy. I have been getting regular treatments of IVIG since then, because my immune system is still attacking my myelin sheath today. I found that I have been blessed to be able to do the things that I can, because there are so many with these diseases that are left in wheelchairs, or quadrapleagic.

God is not as silent as I thought He was. When the glare of adversity is blinding, we have to watch for the evidence of God’s presence and grace in less obvious ways. Regardless of our afflictions – we need to recognize our blessings one by one. The grace of God comes to us in different ways. In this life, God promises a grace sufficient for every challenge. We all know that someday God will wipe away every tear and there will be no more pain or afflictions we face in this life.

I have learned something very important these last 10 years that helped me recover to where I am, from this unbelievable experience — Divine spiritual and family love, heals, restores, and uplifts life more than anything else on Earth.

Warmest regards.

Jethro

Elayne,

Not only a lot of faith – But I had a very strong will and positive attitude to overcome whatever I had. The trache was removed first, then I could move a little finger on my left hand…and I spent all day, with all the energy I had just moving that one little finger, then more fingers on the left hand, then the left arm…then the right fingers, etc. But my legs weren’t doing nearly as well.

The day they strapped me on a tilt table, after laying flat on my back for about 3 months, and started tilting me upward – my body felt like it weighed a ton…and I asked myself if I would ever walk again…for the first time I had doubts. But afterwards, laying in my bed, I said that was just an obsticle – and it may take time, but I would get over it, and over it I did get. Then I started to get more movement in my legs. In mid April we went to the parallel bars, but with 2 therapist trying to help me up…never made it. For the 2nd time I had doubts, and I ask myself if I would walk again. But, just like the last time, I viewed it as an obsticle – it may take time, but I would get over it, and within about 2 weeks I was walking the parallel bars – and finally finished the bars onto a walker just 2 or 3 days before I was released to come home in May.

I continued out patient therapy 3 days a week – and soon was walking with quad canes, and by the time my therapy was up in mid August, I could walk about 300 feet with quad canes. Then it was self-therapy. I set-up a work out plan for 1 hour each morning with 2 10 lb dumbells with my arms, and in the afternoon 2 hours walking – I lived in the country and had a paved driveway that was approx 200′ long…so, I walked up and down my driveway. First with the walker, then with the quad canes, then with a cane. I finally got to about 2-3 miles in those two hours, but still, my legs just didn’t have the strength they should have.

I had enough dexterity in my fingers to punch type, and started doing research about GBS, flu shots, etc. I was reading one article that stated if progress was not being made, and if a GBSer had never had an IVIG treatment, it should be tried. Well, I had GBS, had never received IVIG before, was not recovering well, and I wanted a treatment – my doctors wouldn’t listen to me, I wrote a letter to the neurologist (that misdiagnosed me) and my pcp’s – telling them that I thought I had CIDP and I wanted IVIG treatments….I never even got a phone call. So, about a month later I made an appointment on my own at a University Hospital (UofL) Neurology. After doing NCV/EMG test, they confirmed a dx of CIDP and started me on IVIG. My leg strength progressed immediately, but from about 40% to 65%. That is about as good as it will get because of the axonal (nerve cell) damage.

But, I can walk unassisted, mow my grass, and come and go as I please. I do not have 100% balance though, and the Transverse Myelitis caused major bladder and bowel dysfunctions – I have control, but severe dysfunctions.

But I am blessed to be able to do the things I can do…all things considering. And, if Rosemary had taken the advice of doctors – I wouldn’t even be telling you this story.:rolleyes:

Jethro

Hi there and welcome to the forums. There are lots of nice people around here who will help if you need it or if you just want to talk to someone else who understands.