After eight months, we seem to have moved from “Getting Better Slowly” to “Getting Better Slowed-Right-Down”. Whilst Jennie’s mobility has greatly improved; she is walking unaided now, her upper body and especially her arms and head remain frustratingly abnormal with much muscle wastage despite lots of physio and some exercise.
We seem now to be in the phase where she is waiting for nature to regenerate the damaged axons (electrical cables) of her peripheral nerves, a much slower and less efficient process than the repair of the insulating sheath (myelin), which we are told could take up to 2- 3 years. The axon is responsible for transmitting signals between the brain and the rest of the body and explains why the motor axon is having no effect on certain muscles.
The reality of what has happened has been made more acute by the acquisition of a new home while she was in hospital. As she says, she left the home she loved last June with tingling fingers and an arm that didn’t work. Six months later (via a stint on life support), she returned to a strange environment she had no say in choosing or fitting out etc. The inadequate kitchen compared to her pride and joy at the old house depresses her and whilst there are plans to extend it, that is another story for this blog as is the stress, strain and sleepless nights we have been through.
The emotional impact of acute GBS is now a real problem. Apart from the obvious questions of ‘will I make a full recovery’ and ‘will it recur?’ is a sense of depression and frustration as she is unable to return to her former interests and activities including card making, eating normal food and caring for herself.
Her sleep is regularly interrupted by a recurrence of the nightmares she had in hospital and difficulty in turning over in bed.
The good news is that she is pretty positive and enjoying her new slimmed down look; trying on new clothes and seeing her friends again but not from a hospital bed!
8 comments
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March 27, 2010 at 2:40 am
Curt Matern
Hi, my name is Curt and I have had GBS now for 13 months. I’m writing to extend my support to Jennie and to let her know that things really do get better. I know. When I contracted it, I could not use my hands, arms, legs or feet. My mouth was numb as well as the top of my head. My groin also. I was basically a physical vegetable.
I know all about the slowed to a crawl thing. For me, it seemed to show up after about 7 months. There were many signs of improvement. I could walk, sort of. I could use my hands, sort of. The numbness in the head and mouth were mostly gone, as well as the groin area. But I was frustrated. I couldn’t type, which I love to do. My non-dominant side just wouldn’t cooperate. In fact, today is the first day that I have found myself able to type normally again.
It gets better, but for me it has happened in plateaus rather than a curve. I’ve had days when I”ll be sitting there, and WHAM!, more feeling comes to my legs. Or I’ll wake up and discover that my right hand is almost completely restored. I have never experienced any relapse, so I am heartened.
At 13 months, here is where I stand (no pun intended). I can walk pretty well. People tell me that it looks completely natural to them, though it’s not for me. I still have numbness and tingling. But today I walked a half mile around a beautiful lake, and that meant a lot to me. As I said before, it gets better, but the nature of GBS is that it is very trying mentally. Usually, if I find myself getting depressed I make myself remember what it was like in the hospital and the first months after, and then I lighten up.
Did you know Andy Griffith had GBS? It was after Andy of Mayberry, and it knocked him on his butt for over a year. Then he went on to do amazing things!
I also know about the emotions that go on with life situations. Suffice it to say that my GBS cost me all of my possessions, which I had to abandon in order to move in with family, and now a debt of over $100,000.00 (no medical insurance). I cannot ever pay that off, so credit is about as ruined as one man’s can be. Still, I feel good. No matter how slowly, I’m getting back to normal, just like Jennie will. Of that I am certain. Then, like me, she will figure out what to do next, just like any healthy person out there.
Tell her to be strong and smile. While we have been dealt a lousy hand, it’s not nearly as bad as it could have been. We will recover.
Best wishes and prayers
March 27, 2010 at 11:17 pm
Lori
Dear Jemsec1:
I feel so ill-at-ease stepping on such sacred ground as your dear Jennie’s illness. I wrote her a post (and I don’t know if any of this is appropriate, but I do so with the deepest respect.) I am hoping that because you are sharing, with such love and caring, such a painful and personal journey, that you will bear with the intrusion of my request. I only want to understand more, and to be able to share that understanding with students that may someday be in a position to help to care for the other “Jennie’s” out there that may become afflicted with this scurge; this GBS. Jennie notes in one of her posts that she does not remember much of the early days. I am sending you what I wrote to Jennie to see if you might be willing / able to help me (along with her, of course.) Our case study questions can be completed by a patient; their care giver; or, as is often the case to get a complete story, a combination of both. Thank you for taking the time to read this:
Dear Jennie (and now jemsec1):
My name is Lori and I am an Occupational Therapy Assistant student from Nashville, TN. I am currently enrolled in a class called, Challenges to Physical Health. We have to do presentations (referred to as “modules”) on various diseases, disorders and conditions. They are divided into Part A (Symptoms); Part B (Treatment plans) and Part C – Case Studies. I am assigned to do a module on GBS (Part C). I read yours and your husbands post with interest. They are heart-warming. I wonder if you would consider allowing me to email you some questions (approximately 20 – 24) about your experience and share with me your background. Naturally, the background and your answers will all be handled confidentially. You will simply be “Jennie” from “__________________” (city, if you don’t mind, or simply state.)
You would be helping me immensely as well as the others in my class. God bless you in your recovery. I hope that you get everything back, as well as an insight, understanding and compassion for others that the rest of us can only dream of. Thank you for your consideration,
Lori
April 9, 2010 at 12:11 am
belotts
Hi Lori
I added a comment jemsec situation but I really am new to this blogging thing and even though I see that the comment was listed below others I don’t know if you or others above it see it that’s how useless I am at computers.
I am a GBS veteran (1995). Neck down.
Mentally a GBS sufferer has to stay ‘up’.
Go to this website:
http://andrewbelotti.com/guillainbarresyndrome
and you won’t be disappointed. It’s written by a GBS sufferer so the empathy is right there. I see that meico’s, sufferers, families and people from all walks of life praised the ebook to the hilt. It had been released as a book. Anyway, just for your info. Can’t harm.
Hope this gets through.
See ya
Belotts
March 28, 2010 at 8:20 pm
curtune440
Hi Jennie and Family! I have a Guillan-Barre blog that I have just started. It’s at http://curtune440.wordpress.com/. It talks about my experiences with it (13 months and counting). I was hoping that you might review it and perhaps add it to your links. Hang in there, Jennie, it does get better and better!
April 2, 2010 at 9:30 pm
curtune440
Hello! This is Curt. I’ve tried to reach you guys a few times, but, alas, I get no response. What is up with that? Have you given up on the power of blogging to say what you know? At last count, you have had over six THOUSAND people who have looked in on you, and what you are going through.
I have tried to get you guys to link to me. So far, nada. We are a closed community that needs to tell our messages about GBS. Your stories are powerful, but your voice has been missing lately. I keep trying to reach out to you, but you don’t respond. I’ve been Googling, and do you know what? Apart from you and me and Donovan, who has also become somewhat lax, nobody is on board here to advocate about our illness. Please contact me. You will like me, I’m a nice guy! In any event, happy Easter!
April 4, 2010 at 11:36 am
gbsyndrome
Hi Curt,
Apologies for taking so long to approve your comments. I manage the blog on behalf of my parents; I’ve been away from things so got a bit behind.
marc
http://www.dancingmango.com
April 8, 2010 at 11:52 pm
belotts
G’day Jennie / Jemsec / All others above
re: GBS
I am a GBS veteran (1995). GBS from neck down total.
At the moment still have residual affects (feet). Can walk but can’t run. No complaints.
A really fantastic website that sells an ebook (that was a book) written by a person who had GBS, DOES help enormously. The empathy has you sitting up and taking notice and applying.
http://andrewbelotti.com/guillainbarresyndrome
Great for sufferers, their families and friends. I see that people from all walks of life have praised it too.
Definitely NO harm in giving it a go because MENTALLY we need this so much.
Cheers
Belotts
May 24, 2010 at 6:50 pm
Victoria
I didn’t know it was GBS Awareness Month!
I rec’d a flu shot on 10/12/07 ~ on 10/15/07 I was hospitalized, diagnosed with GBS after a spinal tap, medically induced coma for 10 days, additional 26 days in ICU, 11 days in rehab. I was 56 years 9 months when I started the GBS Journey.
After 5 1/2 months I returned to work. Dispatcher for 65 buses transporting special needs students in 2 counties, 25 different school districts. I use up my sick leave days and vacation days pretty fast…some mornings I can’t get out of bed.
In a nutshell, after 2 1/2 years from onset: I go to bed 6:30 most evenings, my toes feel like someone is pinching them in a vise, my left thigh is still tingly, my brain works faster than my mouth…I have short term memory loss; things I plan in the morning for later in the day fly out the window on most days…
But by the Grace of God I’m alive…I have trach scar, IV port scars, stomach feed tube scar…but that pales next to the scars on Jesus’ hands and feet.
We are a different breed…my family dr. never experienced a person with GBS…he’s fascinated by me…he doesn’t know what to ask me…he just lets me talk.
I’ve bookmarked your site…Hang in there
~Victoria~