Reply
 
Thread Tools Display Modes
Old 09-27-2011, 12:03 PM #1
SallyC's Avatar
SallyC SallyC is offline
In Remembrance
 
Join Date: Sep 2006
Location: SW Ohio
Posts: 17,844
15 yr Member
SallyC SallyC is offline
In Remembrance
SallyC's Avatar
 
Join Date: Sep 2006
Location: SW Ohio
Posts: 17,844
15 yr Member
Default

I was going to suggest she go to Multiplesclerosissucks.com But it seems that Ian Parberry closed it down....sorry???
__________________
~Love, Sally
.





"The best way out is always through". Robert Frost



~If The World Didn't Suck, We Would All Fall Off~
SallyC is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
Aarcyn (09-27-2011), dmplaura (09-29-2011)
Old 09-27-2011, 02:38 PM #2
Aarcyn's Avatar
Aarcyn Aarcyn is offline
Senior Member
 
Join Date: Jan 2008
Location: San Diego, CA
Posts: 1,776
15 yr Member
Aarcyn Aarcyn is offline
Senior Member
Aarcyn's Avatar
 
Join Date: Jan 2008
Location: San Diego, CA
Posts: 1,776
15 yr Member
Default

Quote:
Originally Posted by SallyC View Post
I was going to suggest she go to Multiplesclerosissucks.com But it seems that Ian Parberry closed it down....sorry???
I read that website back when first dx'd back in 2005. I wonder what happened to close it down.
Aarcyn is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
dmplaura (09-29-2011)
Old 09-27-2011, 05:55 PM #3
SallyC's Avatar
SallyC SallyC is offline
In Remembrance
 
Join Date: Sep 2006
Location: SW Ohio
Posts: 17,844
15 yr Member
SallyC SallyC is offline
In Remembrance
SallyC's Avatar
 
Join Date: Sep 2006
Location: SW Ohio
Posts: 17,844
15 yr Member
Default

Quote:
Originally Posted by Aarcyn View Post
I read that website back when first dx'd back in 2005. I wonder what happened to close it down.
Ian seems to have disappeared from everywhere. He is not on FB anymore either??
__________________
~Love, Sally
.





"The best way out is always through". Robert Frost



~If The World Didn't Suck, We Would All Fall Off~
SallyC is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
dmplaura (10-18-2011)
Old 09-27-2011, 05:58 PM #4
Aarcyn's Avatar
Aarcyn Aarcyn is offline
Senior Member
 
Join Date: Jan 2008
Location: San Diego, CA
Posts: 1,776
15 yr Member
Aarcyn Aarcyn is offline
Senior Member
Aarcyn's Avatar
 
Join Date: Jan 2008
Location: San Diego, CA
Posts: 1,776
15 yr Member
Default

Quote:
Originally Posted by SallyC View Post
Ian seems to have disappeared from everywhere. He is not on FB anymore either??
no clue. I have not looked at MSSucks in a long long time.
Aarcyn is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
dmplaura (10-18-2011), SallyC (09-27-2011)
Old 09-29-2011, 07:54 AM #5
dmplaura's Avatar
dmplaura dmplaura is offline
Magnate
 
Join Date: Jul 2008
Location: Moncton, NB, Canada
Posts: 2,195
15 yr Member
dmplaura dmplaura is offline
Magnate
dmplaura's Avatar
 
Join Date: Jul 2008
Location: Moncton, NB, Canada
Posts: 2,195
15 yr Member
Default

I find the most effective (in my experience) way to describe the 'technical' side of MS is to use the imagery of electrical wires with the plastic coating on them (to mimic the nerve in an MS patient).

People begin to 'get it' when you tell them that MS can affect the central nervous system as a whole (and most folk I meet don't fully understand the CNS either - I tell them, everything from the senses to mobility - walking, for example).

Then I explain the process of the disease eating away at the myelin sheath on the nerve like taking a knife and peeling back the plastic protective coating from the electrical wire. What happens when you expose bare wire running a current? Many bad things - and most people at this point have the 'ah HA!'.

If they really want to know how it affects me personally, I tell them "I'm very fortunate that I am not affected with my mobility and cognitive thoughts. I went for years thinking I just had a very bad migraine or headache". Which is the truth. I am very fortunate, but I too make it a point to explain that everyone with MS is like a fingerprint - completely unique from one another and with their disease course.
__________________
2004 to present - Trigeminal Neuralgia
2007 to present - Burning Mouth Syndrome
March 2008 - Multiple Sclerosis DX
05/2008 - Relapse
05/2008 to 02/2009 - Copaxone
10/2011 - Relapse - Optic Neuritis developed
9/2012 - Relapse - Balance issues 1 sided
8/2012 - Erythema Nodosum - diagnosed 10/2012, reaction to Topiramate (Topamax)
April 7/14 - Raynaud's Syndrome DX
dmplaura is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
Aarcyn (09-29-2011), SallyC (09-29-2011), whoopdedeaux (09-29-2011)
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



All times are GMT -5. The time now is 08:30 AM.


Powered by vBulletin • Copyright ©2000 - 2025, Jelsoft Enterprises Ltd.

vBulletin Optimisation provided by vB Optimise (Lite) - vBulletin Mods & Addons Copyright © 2025 DragonByte Technologies Ltd.
 

NeuroTalk Forums

Helping support those with neurological and related conditions.

 

The material on this site is for informational purposes only,
and is not a substitute for medical advice, diagnosis or treatment
provided by a qualified health care provider.


Always consult your doctor before trying anything you read here.