Update 14 - Survey Results Part 1

Thanks go to the 350+ people who have filled in my survey up-until now.  As stated I will publish the results in parts as there are so many and a lot to comment on.  The survey is still available @

 HTTP://GBS-CIDP.QUESTIONPRO.COM

All the data is gathered from the survey and I have put into graphical form using Excel, not all people completed the survey (around 82% did and I put a minimum number of questions answered in for the results to be valid).  I have concentrated on differences between GBS & CIDP plus Male & Female, if there other slices people are interested in please contact me:

drew@markhams.me.uk

The first set of results are on the initial number of people and what illness:

This graph shows slightly more women filled in the survey than men, while the numbers for GBS/CIDP were roughly equal (slightly more with CIDP), the data is Female 186 (89 GBS, 89 CIDP), Male 162 (75 GBS, 83 CIDP).  Plus other illnesses (the man ones: 3 x still to be confirmed/diagnosed, 3 x sensory Neuropathy), others didn't state what.

From reading relevant documents it appears that more men have GBS/CIDP than women, so obviously women are more trusting :-)

The age range does more or less tie in with most opinions (I think people are a bit younger than thought), with 60% being 45 or over, I can't comment on pregnant women supposedly more at risk afterwards as I didn't ask that question!

There is also minimal differentiation between the age people contracted GBS or CIDP.

The final set of graphs for this post are about how long to be diagnosed:

These graphs tend to confirm the general opinion about diagnosis.  However the average times are:

GBS: 42 Days,  CIDP: 1004 Days

These are both skewed by a small number of  very large entries, which are either where diagnosis did take very long time or potentially incorrect entries.  What does appear to be certain is that there is significant variation in diagnosis times.

If the longest 10 are removed the averages go down significantly to:

GBS:  10.5 Days, CIDP: 406.8 Days

If you have any questions or comments, then please contact me.  More in a couple of weeks (on Fitness, how it was contracted....).  Sorry too much to publish in one go!

August 12 - Update 13

Sorry for the delay in posting, but been trying to redo the layout of this blog (as it has become rather large) and have been getting the survey results ready for publishing (hopefully both will be done by the next post - unless the consultants get there first, so watch this space...)


I have just managed to walk half a mile (approx) with the aid of a stick in my local woods.  Really great to be out and manage it, but was absolutely shattered at the end and sweating like a pig!  They say this is supposed to be good for you?  I chose a path that was flat and fairly even, but I had problems picking my feet up properly, especially when I got tired.  I also found put that I now do not walk as quietly as I used to, I saw a rabbit ahead and before I could get quite close without disturbing it, but this time as I saw him, he heard me and was off!

My brother was running a half-marathon yesterday in Sweden (I hope he did OK), my half a mile felt like a half marathon to me.  Still after sitting in the car for a while I was able to drive home.

My daughter graduated in Law from Cardiff:

I am really pleased for her and the hard work she has put in to get to this stage.  Now she has to do the LPC to enable her to become a solicitor, so one more year of effort left.  I managed to get to Cardiff to see the ceremony, which was great.  There was a fair amount of walking/standing which I found very difficult and tiring, but I managed it, in small doses and seats being found/provided at every opportunity.

One curious side issue with being disabled is that parking and access are treated differently throughout the country.  In Cardiff around the University there are no disabled parking space, but parking is free (so you have to fight for a space and hope it is not too far away - we were lucky), yet just abut everywhere else there are marked spaces, close to the facilities.  My local train station is brilliant as on one side you have to pay, but on the other you don't (because the disabled spaces are nowhere near the main parking area (so guess which side you park?)

BTW in a certain chain of Hotels, they no longer have disabled rooms, they are now "Universal Access" rooms!  What a load of baloney! Apparently they have been changed so a not to offend?  It was more offensive to me that they changed them, what a waste of time and money for the company, do I really care what I am labelled (maybe others do)?