Do you know anyone with Multiple Sclerosis?

dilligaf

IN VINO VERITAS
This is correct.

And NEVER apologize for loving your child or for public displays of behavior that can't be control.

This is a safe harbor.

Blessings and rant away becaue we are listening!!!
AJ
Even for you. I see it went well. I am happy that you did it. We ARE listening. I wish I could have been here, AJ.
 

ticoo

Member
My uncle has M.S he is an american living in spain he has all the money in the world to live anywhere he wants and he choses spain because of the treatment there he says the best in the world . with a big diet change and sticking to it and the medical treatment hes been able to hold off the wheelchair for at least 5 yrs he walks on cruches but none the less no wheelchair
 
D

Dis-organized Labor

Guest
Why Here?


Reading this thread reminded me of an event that happened last year. I very small event, but after reading this, my mind snapped right back to it as if it was yesterday. I was walking down a street and there was a attractive young woman sitting in a chair holding a handwritten sign that only said: "Why Here"? I asked her what the sign meant and she told me that she had MS and wanted to bring attention gto MS and what it is like to have it, what it was about, etc. I didn't think much about it, but told her that she looked great and i wished her all the luck with it. I wasn't really sure what MS is and may have confused it with MD. There are two points I want to make with this:
1. There was absolutely no evidence whatsoever that she had that disease. She was maybe in her 20's. She was pretty, her skin had a healthy glow, she seemed very happy, had a nice, bubbly personality.
2. Since that event with that girl occurred, I have a friend that has MS and she said something to me that really made me think: She said there is one statement that haunts people with MS: "But you look so good."

I realized that I didn't say that exactly to that girl, but it was close. I'm sure she would have realized that I was a bit uncomfortable and didn't know what to say to her and probably have say not to worry about it.
Since then I have started to educate myself and others and somehow "help" in a small way. I also try to be a different person and maybe be a little more considerate of others.

Why Here?

 

stevetheupsguy

sʇǝʌǝʇɥǝndsƃnʎ
aj, I admire your courage. It takes guts to stand up and turn your own challenging situation into a way to educate others.

A friend of my cousin has had MS for 40 years. She is symptom free most of the time but every couple of years MS reminds her that it's still there by forcing her to use a cane for a month or two.

My mom's friend's daughter was diagnosed with MS a couple of years ago. From what I've heard from my mom she's recently had a baby and is doing very well.

Thank you for trusting us enough to share your situation with us. I know that couldn't have been an easy thing for you to do.
That goes for all who've shared these very personal, private situations that they face. Remember, you're not alone. We're all in this (life) together.
 
D

Dis-organized Labor

Guest
There is an Airline Executive retiring after 35 years of service. He is a nice guy and has served on the Board of Directors for the Multiple Sclerosis Association.
Check UPSers.com and see if you know him. 35 years is a long time
 
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soberups

Pees in the brown Koolaid
A driver on my center had MS, it started off with numbness in his feet and within a few weeks he was unable to work at all and had to go on disability. I think it was back in 2004 that he was diagnosed. Unfortunately, he passed away last year. It was gut-wrenching to see what it did to him, my heart goes out to his family and anyone else who is facing a similar challenge.
 

soberups

Pees in the brown Koolaid
A driver on my center had MS, it started off with numbness in his feet and within a few weeks he was unable to work at all and had to go on disability. I think it was back in 2004 that he was diagnosed. Unfortunately, he passed away last year. It was gut-wrenching to see what it did to him, my heart goes out to his family and anyone else who is facing a similar challenge.

I feel like an ass.

I was wrong, the driver I mentioned did not pass away from MS, he had ALS (Lou Gherig's disease). I got confused.

My apologies.
 

ajblakejr

Age quod agis
MS and leadership.

What a concept.
What an unpredictable idea.
The only sure thing about MS is that it is recognized as unpredictable.

I would like to thank everyone on BC for the unconditional support since I allowed my deep dark secret see the light of a BC day.

My moderation responsibilities moved from being a moderator to a Fantasy Football NFL Commissioners of two leagues on the MS support website. It is exciting to feel the passion brewing for a sport I live for by new friends that never considered cheering for any other team but the stale "home team" of their city.

And I appreciate the friendship of someone here that offered me help with the Fantasy Leagues...

My heartfelt appreciation for all the moderators on BC.
I have watched and I have listened.
I have learned by observing…

I have used the phrase
"remember to see your doctor before following any advice posted on this website" and
"remember that this is just an observation; please refrain from providing unsolicited advice...we all recall that life altering feeling when the doctor told us we had MS..." and on and on.

And I know that this is "ALL ABOUT ME"...but it really is all about everyone here that made it easy to bring AWARENESS to MULTIPLE SCLEROSIS.

It is all the private messages.
It is all the stories that pass from my eyes to my heart about family, friends and co-workers with MS.
It is all about the few others that quietly know the awfulness of the MS life sentence because it is the face they look at every morning.

I am here.
I listen.
I know.

I just ask that when I am sent a private message...never apologize for having MS.

Blessings
aj
 

ajblakejr

Age quod agis
I want to add this regarding my Fantasy Football Newbie’s!!

One lady, she communicates with her computer with blinking or movement of her eyes.

One young man, he communicates with is voice since MS ripped his vision away on one awful winter night four years ago.

One seasoned gentleman, a diehard fan of the criminal element Oakland Raiders, sat in his wheelchair and counted the days before he would be blessed by the grim reaper to take him out of this crap shoot called life with Multiple Sclerosis, is playing on both leagues.

I have maintained that Fantasy Football is the GREAT EQUALIZER.
Fantasy Football gives you a reason to watch teams play outside your division.

And I have said it before and I will say it again...

God Bless the NFL.
God Bless the players.
God Bless the fans.

Because God blessed me with Multiple Sclerosis.
It is because of Multiple Sclerosis; I can make a meaningful difference in the life of someone else with MS.


Count your blessings every day, a thief called MS could sneak into your life and take away the person you know as YOU.
I am still looking for the person I lost on September 26, 2006.
I think I found a better person in her place.
 
[PIC][/PIC]
You may have noticed my avatar.
Dizzee created it for me. I volunteer on a MS website. The image has received positive reactions from the MS board members.
Mostly it helps smash a stereotype board participants perceive about themselves and that they allow others to perceive about them.
I am glad you have noticed my avatar because now you are aware of Multiple Sclerosis.:happy2:


I ride in the 150 bike ride to raise money for MS.

I discovered that my next door neighbor has MS, the lady on the corner has MS, the lady down the street that sits outside in her wheelchair has MS and the face of the woman I see in the mirror everyday, she has MS too.


All of them have MS but none of their symptoms are the same.

Rephrase.

We all have MS and none of our symptoms are the same.

And that is just my experience in my neighborhood.

I know Montel Williams, Clay Walker (Country Music), Kelly Sutton(Craftsman Truck Series), Ann Romney, Richard Pryor, Roman Gabriel (LA Rams QB) and Annette Funicello, all have MS.

Do you know anyone with MS?

It is time for me to step up and make others aware of MS.
Surprised?
You should see my coworkers.
It has been a closely guarded secret for three years.
And yes, just in the past few weeks I have had relapses. I just think it is really the big guy keeping me in line and humbling me. I also think it is his way of reminding me of where I need to be and what I need to do.
And remember that not all flavors of MS come with the same ingredients. Please don't confuse that statement as flip, rather it is a statement I used when I was the featured speaker at a MS event.
No sympathy.
Thanks and if you don't know anyone with MS, now you do.
Blessings
AJ
My grandma Lois 33 years since she was diagnosed. She has more pain than she will ever admit but she takes it like a true mma fighter. Women are some tough human beings. Eight kids and decades of ms and she is still fighting. Jesus is on her side to sure.
 
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ajblakejr

Age quod agis
My grandma Lois 33 years since she was diagnosed. She has more pain than she will ever admit but she takes it like a true mma fighter. Women are some tough human beings. Eight kids and decades of ms and she is still fighting Jesus is on her side to sure.

Damn.
Thank you for sharing.
Sometimes it feels so alone.
Sometimes the pain is so awful
 

ajblakejr

Age quod agis
What is “Awareness” Building and What Does It Look Like?
“MS awareness” can be described as anything intentional that you do to help people understand what MS is, why the Society exists and how others can join the movement to create a world free of the disease. It’s striving to help people understand the MS, the work being done to serve people affected by it, and the research being conducted to end the disease forever.

In many ways you’re probably already meeting this objective, and it’s easy to plan extra activities where awareness fits in. Whatever you choose to do, thank you for doing it. You are making a difference!
 

ajblakejr

Age quod agis
Well, it had to happen eventually.
That is the unpredictable nature of my crappy monster living in my brain.

I was in the studio for a series of glamour shots.
It was routine.
Well, it should be routine
This view and that view, making sure, they catch my "good side".

Confident.
The proofs will look good and a quick see 'ya in a few years.

Six years gone by since the monster made his home in my brain.
I had him contained.
I had him under control.
I owned him.
Daily injections to keep him knocking on the door.
Daily injections to stop him from crossing the line.

My portfolio would make any model proud.
Well...
Not so...not anymore.

I saw my pictures.
Perfect.
Three perfect lesions making their home in my brain; adding to the original collection.

Nothing on the outside warning me.
They are all mine.

It hits hard to know the monster found a way in and dropped three lesions.
Damn.

[video=youtube;xSE8NJHn7ss]http://www.youtube.com/watch?v=xSE8NJHn7ss&feature=related[/video]
 

ajblakejr

Age quod agis
I'm stupid and I know about the ms but what are the three monsters?

It is a metaphor for my MS.
This monster is Multiple Sclerosis.
It lives in me.
I fight it but it can not be killed because it has no cure.

Lesions are scars.
My body attacks the Mylein Sheath around my nerves.
My body tries to repair the Mylein Sheath and in the process a scar is left (lesion).
My body or monster decided to make his mark and left three lesions in my brain.

Think of a Christmas light string.
Nerves are my copper wiring.
And the plastic coating is mylein.
Too much wear and the coating cracks, the copper wiring is exposed.
The copper wiring starts to fray / break connection and stops working.
You grab some electrical tape and wrap it around the cord but it is never the same.
The electrical tape is lesion / scar.

MS really is multiple scars / Multiple Sclerosis.
 
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