This Is MS Multiple Sclerosis Community: Knowledge & Support

so it's looking pretty good for ccsvi. Many of us who had the operation and experienced little improvement are experiencing the big deal which is no further MS attacks.

So what about the damage already done? This is a thread where we think and yammer about making that numb hand resensitized.

The buzzword you have to learn is plasticity. http://www.google.ca/search?client=safa ... iAKW0vysCw

the textbook for this thread is 'a whole new mind' by Daniel Pink which you may have had a dozen people tell you to read.


So when I got diagnosed with MS 10 years ago I had some symptoms. Everything went away. In those days they called it 'remission' but I tend to think of it now as excellent reorganization. New pathways formed to fix all the problems in days.

In 09 I had my second attack, I got a preview of future nasties, but most things reorganized quickly. My left had was numb for only a couple of days, but my right hand has stayed numb til now and I walk like a drunk.


I've been working on this hand, typing long texts, practicing my saxophone, and it's 99% back.
Don't know how to get that last 1.% which leaves me feeling like I've been mixing cement all day and my hands got coated.
ideas?
Weight lifting is pretty out of character for me but lifting large weight sets with my legs
has got my stomach muscles strong, and core strength improves your balance a ton.I don't know if it counts as reorganization but teaching yourself to walk again
is pathway building Im pretty sure.

It would be cool if this thread inspired one person to walk again...dunno, let's see.

Way to Go, Bill! Plasticity is real, and it's inspiring. That's so encouraging to read about your return of right hand function. Incredible!
Jeff's fav book it The Brain the Changes Itself by Norman Doidge
Here he is in an interview--
http://www.youtube.com/watch?v=t3TQopnNXBU

Jeff never had mobility issues, but his brain was really damaged on MRI in the corpus callosum (the part of the brain that connects the right and left hemispheres and controls your ability to express yourself verbally and to create music.) His rehab since venoplasty has been talking and writing more music...and he's better than ever. No more stammaring, music flows, words come. Rewiring around damage. Pretty cool! Let's hear more stories!
cheer

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Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS

that's interesting about the 'no more stammering' .
Im a frustrated novelist. I had a book I was working on for over 10 years, but never finished.

Since Poland, where I first got my 'brain congestion' cleared I wrote 3 novels. http://www.vrhotwires.com/Bill_Meikle/W ... ovels.html

They are not very good but the sh*t flowed so easily. I have to get my quality up now.

Ok, maybe I should try working on my novel, and report back how it goes...

Another buzzword is re-myelination to add to plasticity. I suggest we do not say if plasticity or re-myelination is giving us back certain functions or skills. Then add in vagal nerve decompresion; the impact of supporting therapies (eg vit d and omega 3); more oxygen; less waste products and no one knows what is really happening.
Kind regards,
MarkW

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Mark Walker - Oxfordshire, England. Registered Pharmacist (UK). 10 years of study around MS.
Mark's CCSVI Report 7-Mar-11:
http://www.telegraph.co.uk/health/8359854/MS-experts-in-Britain-have-to-open-their-minds.html

well MarkW that can be your way and kind of the mainstream way but on this thread 'there is no remission only reorganization' . i don't know how contraversial that idea is but I heard someone voice it in a talk over 10 years ago. Whoever it was backed up their argument with fMri the first ones I think. I think the evidence from imaging doesn't back up 'remission' as a concept.What we thought of as 'remylenation' was actually new pathways forming in a whole new area.

I suggest this topic not restrict itself. If I want to say it's re-learning, I think I might know what I'm talking about. I think at my age I have experienced both. Re-myelination is different. It is quick (almost instantaneous sometimes) and does not involve re-learning. It is regaining control and/or sensation that had been lost, without re-learning. Re-learning is hard, and takes practice. In some cases it seems impossible, and in some cases it is beyond you for various reasons. In my case I have to reactivate muscles that have not been used for 8-12 years, and re-teach myself to use them, something I have not done as an adult except for refreshing handwriting and guitar playing skills. At the moment my fingers are still too weak, but they are stronger in the mornings, best just after I awake.

When I was 12 I was in a body-cast for 4 months after being in bed for an additional 2. After a total of six months I seemed to remember how to run from instinct when threatened. My parents came home, and I was out of bed without permission, so I instinctively tried to run. But my bones were weak and I broke my good (right) ankle. Walking was harder. I had to re-learn it over about 2 months. If you had experienced both you would know the difference.

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"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'_MS' is over - if you want it
Patients sans/without patience

hey 1eye I have an idea on the weak hands that strengthening the whole arm might help. Isolating muscle groups that are weak and working those seems to help weakness. Numbness is more of a challenge.

Jeff's fav book it The Brain the Changes Itself by Norman Doidge
Here he is in an interview--
http://www.youtube.com/watch?v=t3TQopnNXBU




Oh ya that's what I meant

http://www.positscience.com/

I just watched the video and it's great. At the end they talk about posit science? Anybody tried it.

so the tech behind the balance system might not be too hard to get.The residual effects are just magic. Gotta try it.

There is an accelerometer built into every iPhone, so theoretically balance data could be sent out to your tongue like in the video or maybe to a patch of skin..

Im thinking the little pad that sends pinpricks might be available already too, maybe as an aid to the blind.

I can write the app I think I have sample code that does something simple with the accelerometer, dunno there's probably an app for that.

I would guess they have had enough publicity from the book and the videos that they have productized it, so it may be available. You could try asking the author on YouTube. I think in the book he said the later versions are not worn in a hat but a pair of glasses. The residual effects were due to the fact that she still has enough (very little) of her vestibular nerves left for the new circuits she developed, through using the tongue device, to be useable with what she had left of her ear systems. They are semi-circular canals, but still a 3-plane accelerometer, same concept as the iphone accelerometers. Most "MS"/CCSVI people probably have much more vestibular balance left. Hooking it up to new pathways is what you do when you wear the device. People with persistant damage are the ones the new plasticity methods can benefit. That's why he talked about habit. The longer you have used the older pathways that are damaged, the harder it gets to hook up new ones, because the large number of now-unused neurons get snapped up by other brain systems, like the phantom itch in the amputated arm that could only be scratched by scratching the cheek.

That's why I worry about having left it too long to re-learn walking.

_________________
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'_MS' is over - if you want it
Patients sans/without patience

Just curious, can you walk in your dreams? I'll withhold my flakey theories on what that might mean,dunno.

So you have to break the problem into tons of tiny steps you can put on a list and check off. Then celebrate wildly the completion of baby steps.
For me, I started just lifting 80 pounds with my legs.Then i added 10 pounds every week or so. Now I do 160 and when Im walking the core feels supported.
I used to think strength training was for losers, but now i'm into it. My buddy with MS went from total disability to total fitness lifting weights. He told me that he still gets
bad signals, but he's strong enough to make corrections so he walks normal. He still has crippling fatigue but he's strong enough to power through most situations.

Such a fascinating discussion, goes into the gnitty gritty of what makes us tick, and how "smart" the brain is whether we know it or not.

I couldn't help but think of my children's recent experiences with attempting to put an end to nighttime wetting, here you have a completely natural function, yet controlled by automatic reflexes/wiring.

My eldest is 9, and when she was in those training years, her younger sister being an infant, would as infants do, cry all night. H. learned how to sleep really hard through those times, unfortunately that is opposite to what we were trying to achieve with the bedwetting.

As most parents will tell you, the mistakes made with the first kid help you do things more right on the 2nd/3rd kid. I mean we just really flubbed things with that.

So here she is, 9 years old, still wearing pullups to bed, 2 nights here 3-4 there then surprise. We tired of washing bedding, and the 5 year old is doing pullups too. Gets pricey.

Pediatrician didnt have much by way of recommendations either other than some medication, no liquids before bed yadda yadda. Somehow I found out about enuresis (bedwetting) alarms and decided to give it a try, 60 bucks (ebay) and 1 month later, our grown up kiddies are 100% accident free.

So these things are a trip to watch in action, they bed down with normal undies, the clip goes on the undies, any wetness on the clip sets the alarm off (which pins to the shirt). It has vibrate, flashing light and one heck of an obnoxious tone. You can select tone, vibrate or both.

With H., she did a few nights then it went off but we had it set to vibrate, no tone. After two accidents she started sleeping through it, so on to the tone. The nice thing is they can pause the sound but not stop it without removing the clip. What happened next had me positively astounded, the tone went off one night, she awoke immediately, it's quite a production.

The next night however, she started to go and shot out of bed. The brain had "rewired" that fast. She's been over a month accident free.

The 5 year old was a bit more interesting, as she had little understanding of what exactly was going on here, only that H wasnt wearing pullups anymore and she was next. I considered her more an objective evaluation as she really had little clue the process here.

We went exactly 2 nights dry, one wet for a week and a half. She would wake up desperately trying to shut the thing off. One night though, she woke suddenly, convinced she had wet but no alarm. Nope, dry as a bone. Thats when I thought (loosely), that her brain was trained, or perhaps rewired is a better word. She too has been dry ever since. I mean that thing worked more in one month than all our efforts over years.

So that would be a rewiring correct? No damage to repair obviously. It was like standing outside watching this fascinating thing called the brain work wonders, even when asleep.

I like the thought of the gyro app too...

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RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap

You know what would be really easy? An app that plays an obnoxious note when the accelerometer detects imbalance. I could see making a noise so obnoxious that it trains you not to lose balance or you'll hear it. Hmm, that would only take a few hours I think. The pee story is proof that machines can help...