Does anyone else feel this MS has stolen their life?

If it's on your mind and it has to do with multiple sclerosis in any way, post it here.

Postby gwa » Sun Jul 20, 2008 6:22 am

Loobie wrote: I don't know, maybe I'm being nihilistic on that one, but it seems like we all were high energy people. Maybe because my exposure to MS has been boards like this and even slowed up we are still doing all we can by participating here and doing what we can.

That may be, and probably is, a completey useless bit of info., but I've always felt that way in the back of my mind. This doesn't seem to pick on the slovenly. Like I said, I could have completely missed the mark on that since we are the ones that are still striving to learn and be on top of any breakthroughs and the slovenly are, well, maybe not so predisposed to do that so I don't see a huge chunk of the MS affected on places like this. After reading this it kind of read like I'm being snobbish or something, but it seems like to a man or woman on here that we all had been kicking some ass before this chopped our legs out. You guys know me, I think it, I write it, but I have always thought that way to a degree.


There is a lot of information around that indicates MS does seem to target higher IQ people, which may go hand in hand with some genetic component.

gwa
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Postby cheerleader » Sun Jul 20, 2008 8:29 am

Catfreak, marc, loobie, Rob, everybody. Word. On everything you've written. Thanks for your honesty.
I'd wondered about the high IQ thing myself, since Jeff's was tested off the charts as a kid. (are there any studies, gwa?) He used to be the most energetic man in the room. The hardest part is watching him try to get stuff done. He's knows he's not in the same body anymore, and he can't accomplish all he wants to. It breaks my heart.

We saw "The Diving Bell and the Butterfly" on dvd, about a man with "locked in syndrome." It's an amazingly well-made film, but I found it almost impossible to watch. I tried to hide the tears. When it was over, Jeff said he thought it was beautiful and profound, and it helped him to realize that his mind will always be free. His attitude continues to amaze me.

As do all of you....
AC
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby cheerleader » Sun Jul 20, 2008 8:46 am

Oh, I forgot....
on my "over-achiever" theory. MS messes with the HPA axis- (hypothalmic/pituitary/adrenal) and causes an over-reaction in this matrix. I have a theory that MSers have extremely sensitive and alert minds, which contribute to the T cells (thalmic) going on the offensive. Not that this is the cause of MS, but merely a contributing factor, related to the body's over-reaching stress response.

MS does seem to strike the over-achiever, type A people. Jeff thinks that he was such a hard worker in his youth, because his body instinctively knew his days were numbered....like Mozart cranking out all of his 600 works of music in 35 years.

AC
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby rainer » Sun Jul 20, 2008 8:57 am

all I have to say is that marc is awesome.
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Postby gwa » Sun Jul 20, 2008 9:33 am

cheerleader wrote:I'd wondered about the high IQ thing myself, since Jeff's was tested off the charts as a kid. (are there any studies, gwa?)


AC


If you google for high IQ and MS or multiple sclerosis, you should find some info. I have read articles that talk about the correlation, but did not keep any links because it didn't seem to amount to a hill of beans to me once a person is diagnosed.

There are a lot of people with MS that don't post or pay attention to the groups, but the MS forums I am familiar with for many years seem to be a cut above the "average" as far as the mental quotient of people. I don't see other newsgroups with the information, essay quality, and research abilities that is shown by people on MS groups.

This may also be a reason that trolls who post about wonder cures or pseudo knowledge are jumped on by this group. I have noticed that they don't take a lot of crap from unsuspecting trolls.

Having made the above comment, maybe I just don't see how brilliant others are because I don't go to the science or other high achiever groups that would have smart people on them.

You might also try http://www.scholar.google.com if the regular google doesn't pan out. I know that you will find quite a bit of info on this subject.

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Postby gwa » Sun Jul 20, 2008 9:44 am

cheerleader wrote:We saw "The Diving Bell and the Butterfly" on dvd, about a man with "locked in syndrome." It's an amazingly well-made film, but I found it almost impossible to watch. I tried to hide the tears. When it was over, Jeff said he thought it was beautiful and profound, and it helped him to realize that his mind will always be free. His attitude continues to amaze me.

As do all of you....
AC


Twistedhelix, Dom, is totally bed bound and uses voice recognition software to express himself. It is obvious that he is a very smart guy and he is an excellent example of how the MS mind can continue to operate at a high level even when the physical body is crapola. Some of his posts are (as the Brits would say) brilliant!

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Postby VodooDoll » Sun Jul 20, 2008 3:26 pm

Everyone who has a chronic illness, has every right to feel jipped.
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Postby REDHAIRANDTEMPER » Mon Jul 21, 2008 5:21 am

has it stolen my life..hmm its a good question on some days i feel like heck yes it has and on those days that i am doing good i would say not really..But i know the feeling i have some memory lose and just the other day i sliced my finger on my right hand and didnt even know it until i saw the blood on the floor....did a number to it let me tell ya..those things scary me and affect my life in a bad way..i dont do certain things with my kids due to the no feeling in my leg and arm..dr dont really want me doing certain things because if i hurt myself i wouldnt feel it..with my kids i know it affects their life also..so it had changed my life in two ways..makes me appreciate my friends family and time with them more, but had limited what i can do and for how long...

chris
waiting for answers
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Postby Loobie » Mon Jul 21, 2008 8:22 am

To expound on what Cheer said about the "Mozart theory" about getting lots of stuff done early is something I just discussed with my wife no longer than a week ago. Most of it was probably a protection response to deal with the loss of what I've already lost and am going to lose. What I was telling her was that even though I'm only 42 years old, there are not many things 'left undone'. By that I mean there isn't anything I haven't done that is burning a hole in my psyche. I've found true love, have great kids, have been to many different countries, have been very successful profesionally and had worked my handicap to single digits (OK, I had to throw that one in there for posterity :lol: ). Do I feel like my life's complete? Not by a long shot, but I do feel very blessed and fortunate to have taken good advantages of all the opportunities thrown my way to this stage in life. Was I looking forward to a physically active retirement? You bet your ass. I wouldn't have worked as hard as I did to stay healthy and not overweight if I wasn't planning on being a healthy old dude.

Like I said, this is probably me trying to make it OK that I will be so limited physically going forward, but I felt I needed to take some time to pat myself on the back for what I DID accomplish and focus on that rather than on what I can't do anymore. It just kills me to watch my wife mow the grass. That was always my thing, but I think I would be coming from a much different spot if mowing the grass was something that I hadn't done yet but was really looking forward to. Obviously a mild example of 'life's milestones', but it was to make a point. I can't imagine getting this at a young age and to not have even really got your life cranked up yet. My heart goes out to anyone who gets this shit, but especially to the young people. I have a very good friend whose daughter got diagnosed at 19. She is 22 now and just starting to notice symptoms. She is so full of life and was a major league competitive cheerleader at Tenn. State. You know those cheer groups who look like high flying acrobats. One of those. She also graduated Summe Cum Laude. I guess that just furthers our 'high achiever' theory. I guess this theory is pretty useless in terms of what you could actually do with it, but understanding it all and coming to terms with our illness is important too.
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Postby robbie » Mon Jul 21, 2008 9:47 am

but understanding it all and coming to terms with our illness is important too.

hey lew i have come to terms with it and that is something that you have to do it's just the future that i can't accept. watching my wife doing it all is hard, she deserves more. seeing as how i am to chicken as of yet to stop the ms myself i am almost looking forward to going into a long term care facility so my wife can get on with her full life. as much as we love each other she is not the kind of person that will always want me around no matter how bad this gets. she would say it's just me that thinks that way but deep down she knows i'm right. day by day
Had ms for over 19 years now.
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Postby Loobie » Mon Jul 21, 2008 11:32 am

I hear what you are saying. In an article in ESPN the magazine about 6-9 months ago there was an aricle about one of the ultra-marathoners that runs that crazy ass 100+ mile race through Death Valley. His mom has MS and is in a long term care home. I bring that up to explain his motivation to continue when his body and mind are telling him to stop. He explains how his mom loved the family so that she divorced her husband to 'set him free' and checked into the facility. He says he uses her as motivation when he starts hallucinating from the heat and tries to imagine what that must have felt like and says he imagines the pain he is in is nothing compared to that. I can't even imagine what telling her husband must have felt like, but it sounds like you may have imagined it. I'm not at a point where I can relate to that yet. I know you are. I appreciate you sharing man, it can't be easy for you at all right now to think about, much less talk about, stuff like that.
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Postby MrsGeorge » Tue Jul 22, 2008 2:42 am

Has it stolen my life? I don't think so - it depends on my day. It has no doubt altered my life, I feel so uncertain about my future and find making plans difficult. I am currently booking a salsa dancing weekend with a group of friends, when my friend asked if I would be able to dance my response was 'i don't know, i might be fine or I might not even be able to walk by december'. I am booking anyway because if I go into a cave, stop doing the things I love to do and wait for the MS to destroy me then I have given it my life.

So yes, I need a stick to walk, I can only dance with 3 people because they know my limitations and I have gone from being an exceptional dancer to an average dancer, I only have 4 pairs of shoes I can now wear, I get patronising sympathy from everyone who notices my leg brace and have to poke a needle into myself every day in the (unsuccessful so far) hope that I won't get more symptoms. I have gone from being intelligent and well articulated to ditzy and forget ful But... I'm still me, I still have friends and family who love me, I can still do the things I love, even if not as much as before, I am a bloody good counsellor, I have a job I love and I am still alive!

If I focus on what I can't do, and the negatives I could just cry, so i look at what I can do, what my achievements are and how much life still has waiting for me.
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Postby RedSonja » Thu Jul 24, 2008 2:48 am

Not stolen my life, but stolen part of my leg - the part that walks properly. And half of my energy, and the dexterity of my left hand (I suppose a left hand must have sinisterness not dexterity!). And a good portion of my memory. And the ability to converse in a crowd.

My life is still here. I think I am really waiting for MS to give it all back again, maybe they will find a cure someday.

Maybe my life is on "hold" a bit, I think, I could do this if is weren't for MS, but maybe I am just getting old.

But hey, the human body is amazing, you can learn to live with almost anything. When the husband is off riding his motorbike I sit and watch the birds bathing in the pond, this is also very fine.

I could really get depressed about not being able to bike, but I won't let it get me. What good would that do?
Bibo ergo sum
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Postby TwistedHelix » Thu Jul 24, 2008 11:52 am

Marcstck,
Not much gets to me these days: I sometimes think MS has anaesthetised my soul so that, isolated and watching the world through a window or a TV screen, I've become numb to what is going on around me. That is, until I read your description of what MS is doing to your life, (note: is doing not has done – the general public would do well to understand that distinction), and to be honest I'm lost for words. Your courage and appreciation for what remains to you are awe inspiring.
I'm sure you know that MS can plateau at any point, so it is by no means certain that the next 18 months will be a continuation of the last – I sincerely hope that that will be the case.
I think you're right to hold out hope for regenerative therapies: it's my sincerest wish that actual repair will become possible so that, whatever your disability, at least some recovery of function can take place.
gwa is right about Neuren: Australia seems to have some very interesting work going on at the moment… But if you listen carefully you can hear encouraging noises being made in research establishments all over the globe.

catfreak:
That's our old friend MS: chipping away at the marble statue of yourself – familiar, solid, recognisably you – bit by bit like a deranged Michelangelo. Where once you were a confident success, things which used to come easily are now harder. I hope your employer is decent enough to give you a little more leeway but, and this is really important, I hope you can find it within yourself to accept that you have slowed down a bit. Forgive yourself.

Sometimes the overriding feeling is not so much that my life has been stolen, but more as if I've sunk without trace: somehow I've slipped beneath the world's radar and it all goes on somewhere out there. It's kind of like being dead but with better food.

Cheerleader/Loobie
I absolutely agree that stress response has a big role to play, but I have known many different types of people to get MS. I've always imagined that type A people externalise stress as anger, frustration and action, whereas type B people tend to internalise it. Perhaps it is stress itself, and not the way we react to it, which elicits a response in our bodies?
It would be interesting to see if personality types have ever been correlated to MS, but I suppose participants on a board like this are a self-selecting group.
Hmmm… " getting things done before it's too late", that's a bit too close for comfort. You see, the reason I'm not around here quite so often is that I'm trying to finish off a number of creative projects I started years ago, (music, photographs etc. etc.), and I sometimes get the uneasy feeling that my body is telling me I had better hurry up…

Aah well, better get to work!
Dom
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Postby EyeDoc » Thu Jul 24, 2008 7:39 pm

I am glad you are all here. I wish we did not have MS but I am glad to have this site to come to...to put into words what I feel everyday. I wish you all the best of health. And yes, MS is stealing my life. Little by little. Day by day. But we must all continue on as best we can, while we can.
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