Hello fellow members. Just curious, how many of you created a journal on your GBS? Maybe we could use this discussion to share to see how similar or different our GBS comparisons were.
Hi Spencer! I kept a timeline. I think it's a great idea!
Yes Spencer and Tarhealing, I too kept a diary, and I wonder if people who get other illnesses do the same, or is it something about GBS sufferers. What I mean by that is are we not only suffering a rare syndrome, but of a certain mindset that make us susceptible.
I only developed GBS 4 months ago, but have kept meticulous records of all my spending going back over 12 years and have kept every email sent and received since emails started, and so I kept a record of every change in my body since GBS hit me. Is there a relationship there or do sufferers of other illnesses also keep records of their progress.
I did not keep a record, but I was also unable to hold a pencil or pen and write until 3 months after onset. While I think keeping a journal during this kind of catastrophic illness and recovery is a great idea, I am not a meticulous records keeper ordinarily. I have never kept a diary or journal, get rid of old records as soon as it is fiscally or legally prudent and I am constantly looking to clear out "things" so I can simplify my life.
So if there is a particular mindset that predisposes someone to GBS or other rare disorder, I guess I'm an anomaly there as well, lol!
I did have a tough time keeping a timeline because my vision was so blurry, I couldn't hardly sit or make it over to my computer and my fingers had trouble typing (just so weak). One of the first doctors I saw recommended keeping a timeline or I would have never thought of it since they were unsure what I was suffering with initially. It helped me because I couldn't remember exact times when different symptoms hit me. I was just so busy trying to cope with each thing as it progressed. It kind of helped me to have a mission to document this rationally and methodically. Sometimes my emotions weighed in, as times got tougher and I had to keep that in check. I did have a lapse in my timeline when I hit my lowest point in the hospital. I had to summarize a couple of really bad weeks when I was in survival mode and completely out of documenting commission.
The timeline ended up showing a relationship between my symptoms and a vaccine I had just received prior to the GBS symptoms. It's beneficial if you can do it but I can see how that may not be possible in many cases. It would be interesting to compare!
Afraid not because my GBS hit like a freight train and I lost arm/grip strength pretty quickly.
I do remember what it was like- it isn't something a person can ever forget.
I had no vaccine prior to the onset.
GBS Studies show 90% of the people who have had GBS had some sort of infection about 2 wks or so prior to the GBS symptoms starting. In my case, it wasn't lung (respiratory) or GI. My issue was a truly impressively awful UTI that for the 1st time ever I had to seek ER services for. Had a temp > 101 and felt beyond awful. Was scheduled for an outpatient corrective repair the following week so was blasted to kingdom come and back with a high dose oral antibiotic (had to 1 Gm/day which is at least double what a normal dose would have been). While it wiped out the infection it likely took the body's other protective measures as well with it. My surgeon cleared me to proceed so I had the scheduled surgery done.
My GBS symptoms arrived 2 wks later. As I said, it was like a runaway train once things began with obvious function loss by the day, literally.
Good idea to ask. Hope others will respond!
I did reply and now its totally gone- say "W-H-A-T?
Like many others, I lost functional strength by the day once symptoms began and I very quickly could not hold a pen to write anything.
Based on studies I have read, approx. 90% of GBS patients report having had some sort of Infection 2 wks or so before symptom onset began. My case did Not in involve my Lungs or Gut (GI). Instead, I ended up with a severe UTI that required ER level of service. My temp was more than 101 and I felt truly awful. I was also scheduled to have an outpatient corrective surgery to repair something that I had been in pain for for 2 months the following week. I ended up being given an injectable form of an antibiotic and sent home with direction to take an oral antibiotic that was at least 2x or more the normal treatment dose that didn't do any wonders for my stomach as it really was a high dose. I informed my surgeon and he gave me the all clear to proceed even though I was still on a high dose antibiotic regimen. The surgery was done. Two weeks later, the initial symptoms began involving severe severe neck pain + tingling and weakness in my hands and my legs. Thereafter, it was like being on a runaway train as I lost function, literally by the day re: muscle and grip strength just about everywhere. .
Good thought to ask for feedback- I hope you get a lot of responses back to your query!
LJ
Within a few days of onset I was in a coma that lasted 5-6 weeks. Immobility caused sufficient muscle atrophy that I couldn’t write or type until more than three months after onset so no chance for a journal.
I began writing my journal once my hands and fingers were strong enough to type on my computer's keyboard. My OT recommended me to write my journal as a means of therapy. My wife who stood by my bedside through out my ordeal also wrote a journal so that kinda helped me remember things. So far my journal helped a friend who also went through the struggles of GBS earlier this year.
That's awesome!
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I was lucky to regain movement after about 10 days.
My wife too kept a diary for the first week, then my son loaned me an iPad and I used the voice commands to "write" my journal after the first week, when the nurses would prop me up in a comfy chair with a table in front of me next to the window and the iPad set up in front of me.
At first I probably annoyed the other three blokes in my "cell" whilst I dictated my thoughts regarding my changing condition, but having the iPad worked out well because my fellow patients (all stroke victims) would ask me to google things and read out the answers, and for the bloke next to me who was totally paralysed, I was able to look up a blog written by a friend of his, and read him excerpts from it.
So the other patients then became very appreciative of these exchanges and it certainly helped us all cope a little better.
This week, 4 months from onset, I had to see the hospital rehab head doctor and she asked me if I knew when I had reached various milestones, and my notes enabled me to give her exact dates and from that she could determine where I should be in my recovery over the next few months.
I have kept a journal....sometimes I ignore it because I get sooooo frustrated and depressed. therapy and anti-depressants help....analysis is good if you can be positive...you will find trends...and then it seems as soon as I find a comfortable pattern...shoom....I am in an exacerbation episode and feel all symptoms come back for 12 hours...sleep for 24-32 hours and baby step back to "normal" over next week. I am 3.5 years in and have had 3 exacerbation events....seemingly from over doing it....but truthfully they seem to happen if I over do it or not. SO.... Last exacerbation 07/205...since them I have had bad days weekly....and over last 6 weeks 2-3 a week...feel like I am deteriorating!
journals are a good therapeutic tool and good for analysis but honestly I am sort of sick of this whole situation!
As soon as good things started happening I started scribbling them down and I do mean scribble…just looking at my wobbly printing to my hand writing today tells the story.
To keep in touch with my family I used Siri on my iPad which was wonderful. Once one of the careers came into my room and there I was in full flow “as if I were on stage” she said.
What a lovely memory Ozgronk. I really enjoyed reading it. What a great way to bring your ward together and make the time pass in a positive way.
I did a three month study of my GBS/CIDP for my nuero
My overall general condition has deteriorated over the last 12 months so I’m thinking of repeating it to compare the two sets of results, should be interesting
Have to add I don’t keep a journal, not really all that good with expressing how I feel so its numbers and figures all the way for me
Hi Spencer, Hi everyone
I’ve not kept a diary for years and years, But the GBS experience has moved me to put pen to paper. It’s quite a basic diary though just tracking medical appointments, what exercise I’ve done, how I feel, what I ate (mainly scrambled eggs as I have bilateral facial problems!), whether (and where) I have any twitches and so on. It’s so hard tracking improvement as I find on a day to day basis the differences can be very very subtle. But I’m hoping that looking back I’ll be able to see bigger trends in improvement. It also helps to identify what might constitute “overdoing it” and the subsequent effects. Then I can report more accurately to the neurologist.
I was lucky in comparison to many of you it seems - I only had numbness in one arm - but looking back at my handwriting in the hospital it’s apparent that I have made progress. I’m trying not to use the computer too much as it hurts my eyes so much now.
If the detail I have collected might help someone else then that’s great. My particular problem with the face is rare and not much information available on it.
All the best to all of you for robust recoveries.
I’m not a GBS patient but do have to keep track pf “things” for med management. I started using this app with great success. great for us non-journalers.
TJ