Carnival of MS Bloggers #144

Welcome to the Carnival of MS Bloggers, a bi-weekly compendium of thoughts and experiences shared by those living with multiple sclerosis.

Other Voices - Why Megan Supports the MS Society

by Rex Parker of Biking MS

The reason I support the National MS Society is well-known to readers of this blog. There are so many other compelling stories from people I'm connected with that I wanted to start sharing them with you...

The more of these stories I hear, I realize that their stories are mine and mine is theirs - we're all connected. So many families struggle to cope with MS. So many of us have lost family members and close friends. I hope that many of you recognize your own struggles in these stories, and get the same sense of support and camaraderie that I do. And a sense of hope that we can all work together to realize a world free of MS.

First off here's my friend Megan Nettleton, Community Relations Specialist for the National MS Society here in Boise. Megan's story is well-known within the MS community here in Boise. Megan is married to Chris Nettleton, the sports director for KBOI Channel 2. Chris suffers from MS, and has been a vocal and active supporter of MS Society events here in town, often lending his talents to emcee events. 

Megan and Chris

Megan's story is interesting to me, as she has a unique personal and professional connection to the MS Society. Here's her story, in her words...

“Before working at the National MS Society, I managed a bank for six years. I was never one to believe that anyone could truly love their job, but I am a believer now. My husband has MS, so it is an amazing feeling going to work and ultimately helping my husband every day! Who else gets to say that they get to do that? And now, it is not just about him anymore, but I now work here for all the amazing people I have met along the way, people like Rex! People that give so much of themselves without a second thought. That is why I support the National MS Society…because they support me!”

Me and Megan at "Meet Me Monday"

Just think about what most people do when faced with an MS diagnosis in the family. Sure, there are phases of anger, denial, depression, etc. But Megan not only went about arming herself with the knowledge she'd need to help and support Chris - but she also went to work for the one organization that will give them the most support during this ongoing fight. Megan has the unenviable task of being a one-person shop here in Boise, and I appreciate the positive energy and dedication she brings to the job.

And, to give you more insight into what Chris and Megan have to deal with, I swiped the following post from Megan's Facebook page. This is something she wrote when raising funds for her Walk MS Boise team...

"I was thinking today that a lot of you probably don't know very much of my husband's story and his multiple sclerosis diagnosis. And here I am asking you for donations quite a bit lately, so I thought I would share a little bit about his journey:

In 2008 his feet went completely numb. His doctor thought it couldn't possibly be MS because it was in both feet equally - so he went through a lot of testing, including electro-shock therapy on his legs, and muscle tests that involved shoving a 3-inch needle into his calves and moving it around to see if his muscles were working properly. Crazy, I know. Then he had an MRI and based on those results, his neurologist told him that he either had a brain tumor or MS. It is weird to say this, but luckily, it was MS and not a brain tumor. 

Because my husband is an all-or-nothing kind of guy, he went on a therapy immediately, which entailed me ramming a 3-inch needle intramuscularly into his thigh. And any of you that know my husband - he is majorly phobic of needles, but this was something we did for the next 2 1/2 years. And then one day he went in for a generic check-up, and surprisingly his liver numbers were way elevated. They discovered that the therapy had started to damage his liver, so he had to immediately go off of it. His only other option at this point for therapy: a DAILY shot. Great. But, my husband bravely endured it for one month, even though he had a severe skin reaction that caused his body to be covered in red, itchy, sore welts that never seemed to go way. 

What other choice did he have? Remember...all or nothing! 

It was then that the first pill for people with MS was released...TRIUMPH! He has been on it ever since, and has done very well! And this is all thanks to research...which brings me to my conclusion: please donate to our Walk MS Boise team to help raise money for research so more therapies may one day be available!"

Of course, the funds we are raising for Bike MS contributes to the same research that helped provide new therapies for Chris.

Thanks for sharing that, Megan! Look for more "other voices" stories over the coming weeks...

This concludes the 144th edition of the Carnival.  The next Carnival of MS Bloggers will be hosted here on July 11, 2013. Please remember to submit a post (via email) from your blog of which you are particularly proud, or which you simply want to share, by noon on Tuesday, July 9, 2013.

Comments for this post.

Muscle Spasms and MS

For a few days back in June, I had a collection of muscles around my hip and at the top of my thigh which have been causing a great deal of pain and a lopsided limp.  At first, I thought that maybe pushing a REALLY heavy grocery cart, even for only a fraction of the time around the grocery store on Wednesday, may have caused an avalanche of spasticity.

Then, my leg and hip were so painful that I finally filled a prescription my nurse practitioner had given me in April (for diazepam) to combat painful muscle spasms.  I’ve tried it and so far, it has made little difference.  But each day has gotten a bit better as long as I limit how much I stand and walk around the house.  Today the spasms seem to be almost gone.

This episode of muscle spasms and pain has been rather annoying but nothing which required a trip to the doctor.  (Although if it had continued to get worse, I would have been seriously considering it.)  I had a little talk with my muscles and we tried to come to some sort of agreement.  I will try to remember to do things within my strength and ability without straining large muscle groups, and my muscles will attempt to remain non-spastic.  That seems fair enough to me.

Read this post in its entirety:
Muscle Spasms, Relationships, Patience and MS

Heart Disease, Not MS

MS is such a bizarre disease which affects the body in many different ways because it disrupts the central nervous system (CNS) which is the headquarters of the body’s electrical system.  Sabotage the electrical impulses traveling to and from the brain and it’s hard to predict just what might happen.

Let me tell you about two MS friends.  Each had a heart attack, but only one had a positive outcome.  The first friend, Laura, shares that she had a heart attack and was fortunate enough to get help quickly and suffer little heart damage.  She says, “dumb luck and listening to the voices that told me something was wrong sent me to the ER before my heart attack happened and it occurred in the hospital while I was already hooked up to nitroglycerin.”


Read this post in its entirety:
Listening to your inner voice: When it isn't MS but Heart Disease

Meeting RA Blogging Friends in Person

Read this post in its entirety:
Seamus Mullen and the RA Blogger Summit in NYC

Carnival of MS Bloggers #143

Welcome to the Carnival of MS Bloggers, a bi-weekly compendium of thoughts and experiences shared by those living with multiple sclerosis.

The cold, hard, blue truth

by Annettia at My Life According to MS

I still have days where I forget about my new reality.  I guess sometimes it is quite easy for me to forget.  I mean, minus the bone-numbing fatigue and the almost peeing in my pants at least once a day and the excruciating nerve pain I really can forget that I have different abilities.

I mean, I guess that’s expected, right?  I am still considered a newbie…I think.

So, sometimes I forget about my ability status.

Until I am reminded…

Usually by that cold, hard, deep blue rear-view mirror placard I keep in my purse.

This recently happened to me.  I’ve been feeling quite “normal” whatever that means.  Then this week it was a tad humid and I’m kind of fighting a cold or allergies or something.  That always messes with my abilities.  Then it was a bit warm at work.  And I had to walk quickly.  And I started to feel off…

I always start to get a little bit scared and worried when that feeling happens.  You know, that feeling where my legs get a little weak.  And this isn’t the good weak like I just saw my crush walking toward me.  This is the weak where I may not be able to walk to my car after work.  Or the kind of weak where I may need my mom to wheel me out of Target in the shopping cart.  Or the kind of weak where I have to find a seat in the middle of a store and rest for a bit before I move on.

Then, the unthinkable happened.  I went to lunch with my work team to celebrate a coworkers baby.  My supervisor sat right next to me. 

Now, remember, I keep my handicap placard in my purse in case I’m ever not driving and I need it.

I am normally very aware of the bright blue placard in my purse and do a fabulous job at hiding it from people that do not yet know of its existence.

Until this day.

Oh yeah, I totally forgot that I was with an entire TEAM of people that are not yet aware of my ability status.  And I am not yet ready to inform this team of people.  And my supervisor was right next to me.

As I was shuffling through the contents of my purse looking for my wallet, my cold, hard, blue placard found its way to the top of my purse and poked its head out of the zipper.  I noticed my supervisor discreetly glance at my purse right at that moment.

I think I was found out.

But she didn’t say a word to me.

We are all therapists!  Come on.  What would she say?  “Why are you a cripple?”  Or, “You don’t look like you need that!”  I doubt any of those words would come out of her mouth.

But I still felt that fear.

I made it through the rest of the day without any other incidences involving my ability status and actually forgot about the entire scenario until I was driving home that evening. 
That’s when it hit me.

I have a disability.

I honestly, truly, 100% have a permanent disability.

What. The. Hell.

And cue the uncontrollable tears. 

How do I forget these things?  It’s not like MS is easy to forget.  Especially when it pervades every single fragment of my life.  It’s not as if MS is something that just fades into the distance and can easily be forgotten.  It’s not like I don’t wake up every single morning wondering if this will be the day when my next relapse hits or the day where my legs decide to not work again or the day my eyes decide to develop optic neuritis.

But the fact of the matter is…I often forget.

Until I am reminded by that cold, hard, blue truth.

I think I would forget more actually, without that placard.

Maybe I have a lesion on that part of my brain that should remember about my disability!

This concludes the 143rd edition of the Carnival.  The next Carnival of MS Bloggers will be hosted here on June 27, 2013. Please remember to submit a post (via email) from your blog of which you are particularly proud, or which you simply want to share, by noon on Tuesday, June 25, 2013.

Comments for this post.

PML Risk and Rheumatic Diseases

Progressive Multifocal Leukoencephalopathy (PML) is a rare, opportunistic infection of the central nervous system (CNS) caused by a reactivation of the JC (John Cunningham) virus.  PML is a brain disorder that affects the white matter part of the brain, specifically targeting the cells that make myelin (oligodendrocytes).  A majority of adults have been exposed to the JC Virus at some point in their lives.  However, PML is a very rare disease which typically does not affect healthy individuals.   

Individuals with autoimmune diseases such as MS, RA, lupus, and vasculitis are at increased risk of PML, primarily due to some of the drug therapies used to treat these autoimmune diseases which alter the immune system and may allow a reactivation of the JC virus.  However, cases of PML in patients using select disease-modifying drugs is still very rare.  Even more rarely, PML has occurred in RA patients who haven’t taken any disease-modifying drugs or biologics.

Read these posts in their entirety:
Progressive Multifocal Leukoencephalopathy: What is PML? Part One

PML Diagnosed in Autoimmune Rheumatic Diseases, Part Two