Do you know anyone with Multiple Sclerosis?

[ajblakejr]

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.


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

 

[cachsux]

My friends wife has MS. The flavor as you say that can be managed with only an occasional relapse. To ad to that their youngest son son has Cerebral Palsy.His body might be ravaged but his mind is razor sharp and you better be on the ball if you want to trade jabs with him. They were the people who taught me I didn`t have to be uncomfortable around folks with disability's. They both helped my wife and I out when we found out our youngest son would be born with Downs. He`s been a big factor in changing my life.
Thanks for sharing with us. I`m still going to tease you though. Does this mean we can or can`t stare at your avatar anymore? Respectfully of course.

 

[ajblakejr]

My friends wife has MS. The flavor as you say that can be managed with only an occasional relapse. To ad to that their youngest son son has Cerebral Palsy.His body might be ravaged but his mind is razor sharp and you better be on the ball if you want to trade jabs with him. They were the people who taught me I didn`t have to be uncomfortable around folks with disability's. They both helped my wife and I out when we found out our youngest son would be born with Downs. He`s been a big factor in changing my life.
Thanks for sharing with us. I`m still going to tease you though. Does this mean we can or can`t stare at your avatar anymore? Respectfully of course.

Thank you for bringing tears of joy and sadness to my eyes.

Of course you can stare at my avatar.

 

[BROWN430]

No I don't. But my wife has an uncle and 2 cousins with Muscular distrophy. So we have been on the watch to look for the signs of it in our 2 little boys. I don't mean to change the subject from Multiple Sclerosis , but we have been watching for the signs of m.d. and we just found out our oldest boy (5yrs.) has just been diagnosed with tourettes syndrome. So if anyone out there has any suggestions to help our child make things more bareable let me know.

 

[Big Babooba]

My ex's best friend has MS. She's had it over 20 years. To her, MS is an occasional bout of numbness and/or dizziness. It sometimes slows her but never stops her. Another schoolmate of mine also had it. I lost touch with him after high school. I don't know when he was diagnosed or what his life was like. I read about his fight in his obituary last month.

 

[ajblakejr]

No I don't. But my wife has an uncle and 2 cousins with Muscular distrophy. So we have been on the watch to look for the signs of it in our 2 little boys. I don't mean to change the subject from Multiple Sclerosis , but we have been watching for the signs of m.d. and we just found out our oldest boy (5yrs.) has just been diagnosed with tourettes syndrome. So if anyone out there has any suggestions to help our child make things more bareable let me know.

Changing subject? Actually you stayed right on subject!!!


Call this thread a safe harbor. I can not imagine what it is like to be vigiliant and watch a child for signs of a Neuro-muscluar weakness.

This is a forum.
I am glad you felt you could share the news a doctor kicked you in the stomach with...Tourettes.

Perhaps from this large BC membership, we have a coworker familiar with tourettes syndrome and is able to reach out to you. This thread is a good place to start.

Blessings
AJ

 

[trplnkl]

AJ, I have a cousin with MS, she was diagnosed around 30 years ago. Overall she has been in remission with multiple short bouts of relapses that created damage that is ever lasting. Other than some speech problems I can't tell there is anything wrong with her. She has lead a very full life with children, grand children and has always held a job. I guess one could say she is one of the lucky ones. I know she thinks so.

I also had a friend whose 2nd wife has/had MS, their story isn't as good marital wise. As far as I know she is still around but unfortunatly he isn't (unrelated to MS).

I think you are probably a very good ambassador for the MS foundation.

 

[cheryl]

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.

 

[cheryl]

No I don't. But my wife has an uncle and 2 cousins with Muscular distrophy. So we have been on the watch to look for the signs of it in our 2 little boys. I don't mean to change the subject from Multiple Sclerosis , but we have been watching for the signs of m.d. and we just found out our oldest boy (5yrs.) has just been diagnosed with tourettes syndrome. So if anyone out there has any suggestions to help our child make things more bareable let me know.

I don't have any personal experience with tourettes, but I do admin a forum for "battle weary" parents. It may not be exactly what you are looking for but there are people there that could be helpful to you. The community there is very knowledgeable and helpful.

They have kids that are facing a variety of different diagnoses like oppositional defiant disorder, aspergers or autism but I know that there are at least a couple of parents whose kids do have tourettes.

http://www.conductdisorders.com

Search the forum for tourettes, I tried to paste the search results link here but it won't work...

 

[tonyexpress]

AJ,

You're a brave and respectable soul!!

Thanks for sharing you are an inspiration for us all!!

Tony

 

[ajblakejr]

My ex's best friend has MS. She's had it over 20 years. To her, MS is an occasional bout of numbness and/or dizziness. It sometimes slows her but never stops her. Another schoolmate of mine also had it. I lost touch with him after high school. I don't know when he was diagnosed or what his life was like. I read about his fight in his obituary last month.

Big

Thank you for sharing.

It sometimes slows her but never stops her.

I can say with three years of authority under my styling' baseball cap, living in the same body as this monster called MS, those words are awesome. I hope that I can leave that type of impression.

An obituary: Did your schoolmate pass due to complications of MS?

Blessings
AJ

 

[ajblakejr]

AJ, I have a cousin with MS, she was diagnosed around 30 years ago. Overall she has been in remission with multiple short bouts of relapses that created damage that is ever lasting. Other than some speech problems I can't tell there is anything wrong with her. She has lead a very full life with children, grand children and has always held a job. I guess one could say she is one of the lucky ones. I know she thinks so.

I also had a friend whose 2nd wife has/had MS, their story isn't as good marital wise. As far as I know she is still around but unfortunatly he isn't (unrelated to MS).

I think you are probably a very good ambassador for the MS foundation.

trplnkl

Wow. I can not wrap my mind around thirty years of MS.
I can relate feeling like she is one of the lucky ones.

What bites about feeling like one of the lucky ones is that there needs to be others with MS that are not lucky.
And you never forget that luck can change.
They say the only certain thing about MS is the uncertainty.

And thank you...

Blessings
AJ

 

[ajblakejr]

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.

Cheryl

Three years.
I had to use a cane for the first time to climb the stairs in Lambeau.
It destroyed me.

Five days later; I ran a mile on the treadmill in twelve minutes.

Posting this thread was very hard but I knew it was what I needed to do.
The relapse I just experienced was just the Big Guy reminding me to be humble and remember the promise I made to him when the doctor told me those awful words, "You have MS."

I promised I will make a difference.

This thread is a safe harbor.
And below is the beacon that may make a difference in several families.

I don't have any personal experience with tourettes, but I do admin a forum for "battle weary" parents. It may not be exactly what you are looking for but there are people there that could be helpful to you. The community there is very knowledgeable and helpful.

They have kids that are facing a variety of different diagnoses like oppositional defiant disorder, aspergers or autism but I know that there are at least a couple of parents whose kids do have tourettes.

http://www.conductdisorders.com

I thank you so much for posting this information.

Blessings
AJ

 

[jimstud]

we have a driver in local 653 a big strong marine who was diagnosed with ms about 6 years ago.the union and ups worked together put him on the carwash even though he did not have the senoirty,he stuck it out for about 3 years till it got so bad he was literally dragging his left leg behind him.now he sits at home and his wife takes care of him and her mother who has alzheimers (i know i spelled that wrong)it is out there everywhere.

 

[BROWN430]

Thank u A.J. I'll be checking out the link u sent me. It's just a trying time now but as we learn more and adjust , I'm sure it will all work out.

 

[ajblakejr]

Thank u A.J. I'll be checking out the link u sent me. It's just a trying time now but as we learn more and adjust , I'm sure it will all work out.

Brown

Cheryl posted the link.

I felt it was important to repeat.

Blessings
AJ

 

[ajblakejr]

we have a driver in local 653 a big strong marine who was diagnosed with ms about 6 years ago.the union and ups worked together put him on the carwash even though he did not have the senoirty,he stuck it out for about 3 years till it got so bad he was literally dragging his left leg behind him.now he sits at home and his wife takes care of him and her mother who has alzheimers (i know i spelled that wrong)it is out there everywhere.

Freaking MS can sneak up on anyone.

This is a difficult post to reply to this early in the morning.
Too much raw emotion needs to be harnessed before I allow what you shared slip away.

Blessings
AJ

Damn MS can take you out of the game.

 

[BROWN430]

sorry A.J.and Cheryl. I kind of got ahead of myself. I know this isn't as serious as M.S. and M.D. but when a child is having diff. in anyway it tears me up. Sometimes you just feel so helpless. It's amazing how we can go out and drive the Big Brown truck all day and be confident and reliable and so helpful to customers, but then you can come home to something that is just so sad and have limited ablility to control. Like I said, it's not as serious as some things but man it sucks to see my boy with all of his "ticks" and I feel so bad for him. One good thing though is I del. to some doctors and have gotten some good advice and some not so good advise. As of now we are going to try to treat it with diet and not the meds. Most of the meds we have researched have some bad side effects. Sorry to rant but I needed to ..............

 

[cachsux]

sorry A.J.and Cheryl. I kind of got ahead of myself. I know this isn't as serious as M.S. and M.D. but when a child is having diff. in anyway it tears me up. Sometimes you just feel so helpless. It's amazing how we can go out and drive the Big Brown truck all day and be confident and reliable and so helpful to customers, but then you can come home to something that is just so sad and have limited ablility to control. Like I said, it's not as serious as some things but man it sucks to see my boy with all of his "ticks" and I feel so bad for him. One good thing though is I del. to some doctors and have gotten some good advice and some not so good advise. As of now we are going to try to treat it with diet and not the meds. Most of the meds we have researched have some bad side effects. Sorry to rant but I needed to ..............

While it wasn`t the original subject I`m sure A.J. doesn`t mind this being a place to talk about things like this especially if you can find some advice.

 

[ajblakejr]

While it wasn`t the original subject I`m sure A.J. doesn`t mind this being a place to talk about things like this especially if you can find some advice.

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