Scoliosis Support  

Go Back   Scoliosis Support > Scoliosis > General Discussions

Notices

Reply
 
Thread Tools Display Modes
  #1  
Old 17th September 2014, 08:41 PM
tonibunny's Avatar
tonibunny tonibunny is offline
T Sr: Admin, Big Sister and Da Police!
 
Join Date: Jan 1970
Posts: 15,314
Default Pen-grip / handwriting problems for those of us with joint hypermobility

Hi everyone,

Since quite a few people here have Connective Tissue Disorders which cause join hypermobility, I was wondering if anyone else here has ever noticed that hypermobility in their hands has caused them to develop an unorthodox pen-grip?

I always suffered when writing, and my hand would cramp up and I'd drop the pen if I tried to do joined-up (cursive) writing, or if I tried to write quickly. I gave up even bothering to attempt joined-up writing and went back to printing as soon as I started secondary school. My cursive writing was always a complete mess, but I can print beautifully.

This did cause huge problems when I was doing exams at school, especially back in the day when a 2-year-long A level History or English Lit course was completely assessed on two three-hour-long exams at the end of the course, each requiring 4 essays to be written. I would manage two and a half if I was lucky, them run out of time. However at the time I thought that this was "just me" being slow. It was only when I saw a hand therapist after being diagnosed with EDS that I was made aware that my pen-grip is "inefficient" as it is very tight and it involves wrapping my thumb over my fingers. I'd physically drop the pen if I tried to hold the pen in what is known as the "efficient" or "desirable" pen-grip, as my fingers bend back on themselves.

Had I been aware of this back then I may have been able to argue for more time to complete written exams. I don't know, it doesn't really matter now (though it does grate rather that I was getting As and Bs for homework essays from the start, but couldn't manage that in exams due to not being able to finish them). I really would not like any of our scoli-kids here to suffer in a similar way without realising, so would like to implore parents to take a look at how their kids are holding their pens just in case they can pick up on any undiagnosed issues.

Also - I've recently started to love to use fountain pens, and have long wished to be able to do calligraphy. However, the way that I hold my pen means that my fountain pen nib points to 8 or 9 o'clock rather than the 11 or 12 o'clock that is desirable. This isn't usually a problem except when using italic or calligraphy nibs, because for me all the "broad" strokes come out "fine" and vice-versa. It took me a loooong time before I realised exactly why my calligraphy wasn't coming out as it appeared in my calligraphy book!

I discovered that there are two ways to counteract this. I could either turn my paper to 90 degrees and learn yo write vertically up the page (which is slow, but it works well!), or use an "Arabic/Hebrew" nib which is designed in the opposite way to a standard "Western" calligraphy nib - their fine strokes come out broad, and their broads come out fine. True "Arabic/Hebrew" nibs are tricky to get hold of though and many of the cheaper ones sold as such on Ebay are actually just ordinary Western nibs.

I took all my issues to a forum for people who love fountain pens, and a very kind guy there said that he was learning to custom-grind nibs and was about to place an "Arabic" nib that he'd just ground onto the giveaway thread. Instead he offered to send it to me for free to see how I got on with it. When it arrived it was a revelation; it's one of his first attempts at this, but immediately I could hold the pen and paper at the right angle for me and see "proper" calligraphy appear! AMAZING. I've since sponsored this guy a bit of money so he can practice with grinding this kind of nib, and I thought I would let you all know that I can put any of you in touch with him just in case this happens to be something that anyone else here might find useful

Here are a couple of photos of my pen-grip; I don't know if they will come out the right way round, but the "Dotpad" lettering should be at the bottom of the page.

Toni xx
Attached Images
File Type: jpg image.jpg (70.5 KB, 14 views)
__________________
37 years old, diagnosed with infantile idiopathic scoliosis at 6 months old with curves of 62(T) and 40(L) degrees. Casting and Milwaukee braces until surgery at 10 - ant release/pos fusion T1-T12, halo traction. Post op cast and then TLSO. Further surgery at 18 (ant release/pos fusion extended to L3 to include lumbar curve, costoplasty) and 25 (another costoplasty). Fusion extended to L4 at 33 (XLIF with 4 pedicle screws and two short rods). Pre-op curves: 76(T) and 70(L). Post-op curves: 45(T) and 35(L). Diagnosed with Ehlers-Danlos Syndrome aged 34; scoliosis almost certainly due to this rather than being idiopathic.
Reply With Quote
  #2  
Old 17th September 2014, 08:42 PM
tonibunny's Avatar
tonibunny tonibunny is offline
T Sr: Admin, Big Sister and Da Police!
 
Join Date: Jan 1970
Posts: 15,314
Default Re: Pen-grip / handwriting problems for those of us with joint hypermobility

Another pic....again, the "Rhodia" lettering should be pointing down across the page.
Attached Images
File Type: jpg image.jpg (56.5 KB, 11 views)
__________________
37 years old, diagnosed with infantile idiopathic scoliosis at 6 months old with curves of 62(T) and 40(L) degrees. Casting and Milwaukee braces until surgery at 10 - ant release/pos fusion T1-T12, halo traction. Post op cast and then TLSO. Further surgery at 18 (ant release/pos fusion extended to L3 to include lumbar curve, costoplasty) and 25 (another costoplasty). Fusion extended to L4 at 33 (XLIF with 4 pedicle screws and two short rods). Pre-op curves: 76(T) and 70(L). Post-op curves: 45(T) and 35(L). Diagnosed with Ehlers-Danlos Syndrome aged 34; scoliosis almost certainly due to this rather than being idiopathic.
Reply With Quote
  #3  
Old 17th September 2014, 09:12 PM
Angeceilien Angeceilien is offline
Senior Member
 
Join Date: Apr 2013
Posts: 848
Default Re: Pen-grip / handwriting problems for those of us with joint hypermobility

Hi,

I used to get into endless trouble in primary school because I wasn't able to hold a pen right. The teacher said I would never br able to write long but I managed till now with my own way.

Ange
Reply With Quote
  #4  
Old 18th September 2014, 04:47 AM
Rachie's Avatar
Rachie Rachie is offline
Maddy's Mum
 
Join Date: Jan 1970
Location: Kent
Posts: 1,494
Default Re: Pen-grip / handwriting problems for those of us with joint hypermobility

Toni, Maddy writes vertically up the page with the paper turned 90 degrees from 'normal'! She hasn't complained about writing taking a long time but she prints rather than writing joined up. I will ask her later if her hand cramps/hurts sometimes.

In the past I have been concerned that she has a connective tissue disorder but this was dismissed by the consultant who job shares with Tucker. She has hyper-mobility in some joints and her skin is stretchy particularly on her arms. When I mentioned EDS this consultant said it doesn't give scoliosis...what???

What would I do to get a diagnosis?
__________________
Mum to Maddy aged 14. Maddy is a patient at Great Ormond Street Hospital and had a growth rod inserted in November 2007. In March 2011 the growth rod was removed because the curve became too strong. In May 2011 Maddy had anterior release, 2 weeks traction on a Stryker Frame and then spinal fusion.
Reply With Quote
  #5  
Old 18th September 2014, 08:17 PM
Rachie's Avatar
Rachie Rachie is offline
Maddy's Mum
 
Join Date: Jan 1970
Location: Kent
Posts: 1,494
Default Re: Pen-grip / handwriting problems for those of us with joint hypermobility

I showed Maddy your post and she is ecstatic! She held a pen next to your photo images and her grip is exactly the same as yours! Her hand cramps when she tries to write properly. I am definitely going to pursue this and, as she has just started year 10, we have time to sort it out. She has one GSCE in 2015 and the rest in 2016.

Is the bespoke pen you have for calligraphy only or does he make ones for normal writing?

Thank you so much Toni. XXXXXXX
__________________
Mum to Maddy aged 14. Maddy is a patient at Great Ormond Street Hospital and had a growth rod inserted in November 2007. In March 2011 the growth rod was removed because the curve became too strong. In May 2011 Maddy had anterior release, 2 weeks traction on a Stryker Frame and then spinal fusion.
Reply With Quote
  #6  
Old 19th September 2014, 09:46 AM
mark's Avatar
mark mark is offline
Mod with a rod (or two)
 
Join Date: Jan 1970
Location: South Shields via Bradford
Posts: 13,977
Default Re: Pen-grip / handwriting problems for those of us with joint hypermobility

This is maybe going of a tangent but over the last year or so my elbow is in so much pain that when I grip things (pens being one) pain shoots right up into my elbow and I tend to feel like I'm going to drop or I do drop the thing tht was in my hand

Ahh well I did put it down to old (ish) age

Mark
__________________
Latitude: 54 57' 34" N Longitude: 1 25' 16" W


Mark's a groovin an a movin
Reply With Quote
  #7  
Old 19th September 2014, 12:57 PM
tonibunny's Avatar
tonibunny tonibunny is offline
T Sr: Admin, Big Sister and Da Police!
 
Join Date: Jan 1970
Posts: 15,314
Default Re: Pen-grip / handwriting problems for those of us with joint hypermobility

Oh Rachie, if this is going to help Maddy at all then I will be so, so relieved for her!!

I can manage with "ordinary" rollerball or fountain pens so long as I stick to printing. I cannot do joined-up writing as I have to move my hand rather than my arm as I write along the page, which causes long words to end up squashed up at the ends as I run out of room for my hand to move. My printing is very neat but sooooo slow.

It's only been in the past couple of years that I've wished to use fountain pens that I have identified the issues with the way I write, and only in the past couple of months that I realised that the problems with orientating my nib were making calligraphy look wrong.

The pen I have was ground specifically for calligraphy. There is nothing I can do to help myself to write faster If I were you I would seek help to get Maddy assesed so she can get some extra time in exams to help make up for this, or even if she can type her exams instead.

I only had my EDS picked up about 5-6 years ago after developing POTS. Knowing that POTS and Scoliosis can both be symptoms of EDS, and that I bruise easily and ache a lot, I spoke to my cardiologist who got my GP to refer me to a rheumatologist - I then got the EDS diagnosis. The Rheumatologist referred me on to a hand therapist (who noted my odd pen grip) and to a podiatrist (who made me some custom-made insoles to sort out my flat feet). All of this has helped to make my life a lot more comfortable. Maddy's consultant is very inexperienced if they aren't aware that EDS can be a factor in scoliosis - plenty of parents on the EDS forums have children with scoli too. I'm not a member of those boards but I think you'll get some useful advice if you joined them.

I'm so glad you have a bit of time to get this looked into before Maddy's GCSEs!!!

Toni xx
__________________
37 years old, diagnosed with infantile idiopathic scoliosis at 6 months old with curves of 62(T) and 40(L) degrees. Casting and Milwaukee braces until surgery at 10 - ant release/pos fusion T1-T12, halo traction. Post op cast and then TLSO. Further surgery at 18 (ant release/pos fusion extended to L3 to include lumbar curve, costoplasty) and 25 (another costoplasty). Fusion extended to L4 at 33 (XLIF with 4 pedicle screws and two short rods). Pre-op curves: 76(T) and 70(L). Post-op curves: 45(T) and 35(L). Diagnosed with Ehlers-Danlos Syndrome aged 34; scoliosis almost certainly due to this rather than being idiopathic.
Reply With Quote
  #8  
Old 23rd September 2014, 09:12 AM
Andis's Avatar
Andis Andis is offline
BlueL
 
Join Date: Mar 2012
Location: NC, USA
Posts: 155
Default Re: Pen-grip / handwriting problems for those of us with joint hypermobility

Rachie--I know things are different here in the states, but I asked for a referral to a Genetics doctor (they can't get her in until december!). Odella is also hypermobile in some joints with her major ones popping a lot and has the stretchy skin. Her ortho has dismissed my concerns as well so the referral came from her primary.

As she is only 4, I haven't noticed anything different about her pencil/crayon grip but she does still go back and forth between left and right handedness. I will keep an eye out for this though!
__________________

Andi S
Reply With Quote
  #9  
Old 23rd September 2014, 06:19 PM
madmclw's Avatar
madmclw madmclw is online now
SSO Scavenger Queen
 
Join Date: Jan 1970
Location: Kent, SE England
Posts: 3,117
Send a message via MSN to madmclw
Default Re: Pen-grip / handwriting problems for those of us with joint hypermobility

Well this is EXACTLY how I write too! And I empathise entirely with the issues when it comes to writing slowly and hand cramping, especially during exams. I don't *believe* I have EDS, but this is how I've always held a pen and even though I don't suffer from the fingers bending back or dropping the pen you describe when you hold it in the 'normal' way I've never been able to teach myself to write that way. I have incredibly neat handwriting when I have the time to make it that way, because I do write very slowly in normal circumstances; in exams my handwriting becomes an appalling scrawl as I'm desperately trying to make my hand move fast enough to write enough in the given time limit! I've had several 3 hour essay exams in the past couple of years for my degree and it's been tough. I know I'm really good at writing essays, but it's been so frustrating having to get my ideas into an essay that's usually only just 3 pages long when my classmates always come out talking about having written twice that. One of my modules this year was 90% exam assessed (and 10% class presentation), so even though my class essays were coming back from my professor with very high First Class marks, I was really worried I wouldn't be able to pull it off when it really mattered.

An interesting point, anyway!
__________________
Diagnosed with adolescent idiopathic scoliosis on the 10th April 2007. Seen at the Child Development Centre at the Medway Maritime Hospital on 18th June then referred to Mr Noordeen at the RNOH Stanmore. Seen by consultant on the 13th July x-rays revealed 77o thoracolumbar curve and severe rotation. Surgery planned in 6 months had surgery on 26th November 2007. Admitted for pre-op on 23rd stayed in over the weekend. Curve then 90o, suffering from pain and reduced lung function. Moved from HDU to ward after 24hrs, then into isolation for suspected infection after 3 days. Symptoms turned out to be a bad reaction to antibiotics.
Reply With Quote
  #10  
Old 23rd September 2014, 06:54 PM
JayMoe's Avatar
JayMoe JayMoe is online now
Senior Member
 
Join Date: Nov 2012
Location: South London
Posts: 925
Default Re: Pen-grip / handwriting problems for those of us with joint hypermobility

I'm the same as Maddie, i dont have it, but also hold it in an awkward way, but differently to how you have pictured. and as a result of this unnatural position, my hand cramps up which can get pretty painful. and also i write way to quickly, and thus making my handwriting appalling and sometime illedgable! so need to make myself write slower. And so i mainly print write because if i join my handwriting up noone would be able to read it.
__________________
Diagnosed at 14 in '08 with Neuromuscular Kyposcoliosis (due to my Neurofibromatosis Type 1) in the Thoraco-lumber region (T-65* L60*).
Halo traction for a week then I had surgery 08/05/14, fused C5-T12 correcting curves by about half! By the wonderful and amazing, Mr Bernard. And then an Anterior Iliac Strut graft in my neck/ chest on the 05/06/14
Reply With Quote
  #11  
Old 27th September 2014, 12:04 PM
nerak's Avatar
nerak nerak is offline
OrangeL
 
Join Date: Oct 2009
Location: Living in Surrey
Posts: 449
Default Re: Pen-grip / handwriting problems for those of us with joint hypermobility

This is fascinating! I always put my not being able to do joined up writing and sloping the paper side ways down to being left handed! It never occurred to me that it could be due to being hyper mobile. My hand tends to cramp with pens that are either too thin or too thick. I purposely by pens that are certain thickness and I am able to grip comfortably. I also get cramp in my hand after writing for some time! Thanks for posting!!

Karenxxx
Reply With Quote
  #12  
Old 27th September 2014, 02:00 PM
Rachie's Avatar
Rachie Rachie is offline
Maddy's Mum
 
Join Date: Jan 1970
Location: Kent
Posts: 1,494
Default Re: Pen-grip / handwriting problems for those of us with joint hypermobility

A quick update. Last Friday I emailed Maddy's year head with my concerns and asked what the process was in terms of assessing whether she is entitled to extra time in exams. He replied that the SENCO had been informed and she was on the list to be seen but he couldn't say when that would be as this is a busy time of year for her. On Tuesday Maddy was tested with a group of others! They did how much you could write neatly in a certain time, how many times you could write a certain paragraph in a certain time, etc. Maddy said she wrote way less than the others. We are just waiting now to hear back from the school.

I also took Maddy to see our GP last week to discuss my concerns about possible EDS or other connective tissue disorder. He agreed it wouldn't hurt for her to be investigated and would be helpful to know one way or the other, so he has referred her to a paediatrician as that is the first step with under 16s.

Toni, your post was so timely. Thank you. X
__________________
Mum to Maddy aged 14. Maddy is a patient at Great Ormond Street Hospital and had a growth rod inserted in November 2007. In March 2011 the growth rod was removed because the curve became too strong. In May 2011 Maddy had anterior release, 2 weeks traction on a Stryker Frame and then spinal fusion.
Reply With Quote
  #13  
Old 28th September 2014, 02:08 AM
tonibunny's Avatar
tonibunny tonibunny is offline
T Sr: Admin, Big Sister and Da Police!
 
Join Date: Jan 1970
Posts: 15,314
Default Re: Pen-grip / handwriting problems for those of us with joint hypermobility

I am so, so relieved that Maddy is getting checked out for this stuff Rachie. If my experiences can help make life a bit easier for her then that will be so good to know; it will definitely go some way to lessen my own sense of frustration!
__________________
37 years old, diagnosed with infantile idiopathic scoliosis at 6 months old with curves of 62(T) and 40(L) degrees. Casting and Milwaukee braces until surgery at 10 - ant release/pos fusion T1-T12, halo traction. Post op cast and then TLSO. Further surgery at 18 (ant release/pos fusion extended to L3 to include lumbar curve, costoplasty) and 25 (another costoplasty). Fusion extended to L4 at 33 (XLIF with 4 pedicle screws and two short rods). Pre-op curves: 76(T) and 70(L). Post-op curves: 45(T) and 35(L). Diagnosed with Ehlers-Danlos Syndrome aged 34; scoliosis almost certainly due to this rather than being idiopathic.
Reply With Quote
  #14  
Old 28th September 2014, 02:23 PM
Round The Twist's Avatar
Round The Twist Round The Twist is online now
Tattoed, Crafty & Twisted
 
Join Date: Jan 1970
Location: Essex, UK
Posts: 2,365
Default Re: Pen-grip / handwriting problems for those of us with joint hypermobility

I was diagnosed with BJHS last year but looking back it's obvious now that I have it my whole life, though I am less bendy these days.

I can hold a pen in the 'normal' grip without dropping it but used to get awful cramps in my hand at school, I was always slow but never gave it much thought past me being slow at everything! Running and PE in general etc slow body + slow brain, so slow at 'catching on' at times...

Sometimes when I pick up a pen my hands are very stiff and I have a job gripping the pen at all.
I do hold my pen exactly how you do at times though! Weird? I can write faster, with less pain but a lot messier like this, it's how I generally hold a pen when I am writing quick notes.

I have ALWAYS had problems with calligraphy too but never figured out what the problem was before I gave up trying, maybe my problem is something to do with this too then, I will dig my stuff out and have a closer look at what I am doing, interesting!
__________________
Liz aka Kat - I will answer to either Diagnosed with AIS at the age of 13. 1st surgery - Mr Ransford @RNOH in 1991, curves = 55T 45L, fused T2 - L2. 2nd surgery - Mr Harrison @RNOH in 2006 - revision of original surgery due to broken rod.
Now have Degenerative Disc Disease above and below my fusion and have recently been diagnosed with HMS and Fibromyalgia and therefore am in a lot of pain daily.
PM me if you want to know more.
Reply With Quote
Reply

Thread Tools
Display Modes

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off
Forum Jump


All times are GMT +1. The time now is 08:56 PM.


Powered by vBulletin® Version 3.7.1
Copyright ©2000 - 2014, Jelsoft Enterprises Ltd.
(c) Scoliosis Support