no matter what

If it's on your mind and it has to do with multiple sclerosis in any way, post it here.
robbie
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Location: Northern Ontario, Canada

Post by robbie »

nothing left to loose cob, i have it all but i have nothing if u know what i mean.
Had ms for 28 yrs,
8.5 EDSS
SPMS, 54 yrs old
Taking it day by day
robbie
Family Elder
Posts: 1300
Joined: Thu Jan 27, 2005 3:00 pm
Location: Northern Ontario, Canada

Post by robbie »

hi terry thanks or the info the maxium edss is 6.5 i'm an 8 but i will ask my neuro.
Had ms for 28 yrs,
8.5 EDSS
SPMS, 54 yrs old
Taking it day by day
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Loobie
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Location: Dayton, Ohio USA
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Post by Loobie »

Robbie,

You know I love you man. Pardon the french, but there have been times on here as I have watched you shoot up the EDSS that I thought you were one of the bravest M*&%$% F(&%^#*'s with MS. As I told you before in a PM, I watched my good buddy's brother go from successful entepreneur to 10 (and we know what that one says) in about 5 years. No one, especially this cat, will ever judge you or think you are a wuss for wanting to throw in the towel. No matter what you do, you have a brother and kinkdred spirit down here in Ohio. From what little I know of you, you were a 'life liver' and not a spectator. When that gets taken away from someone with your vitality, there simply are no words. I don't know what to say other than I'm thinking about you and care about you.

Lew
robbie
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Joined: Thu Jan 27, 2005 3:00 pm
Location: Northern Ontario, Canada

Post by robbie »

thanks lew, we are all in the same boat here and i find comfort talking and reading here. Some days are just so shit the way I feel as I’m sure we all do, it’s just so hard some days to even find a smile but then some are better not in the physical sense but the mental one
Had ms for 28 yrs,
8.5 EDSS
SPMS, 54 yrs old
Taking it day by day
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gwa
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Joined: Thu Dec 01, 2005 3:00 pm

Post by gwa »

robbie,

If you need help with depression, don't be afraid to ask for some help in that area too.

gwa
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carolew
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Joined: Fri Nov 05, 2004 3:00 pm
Location: Ottawa, Ont. Canada

Post by carolew »

Robbie, courage grows out of despair.

You are Canadian like me and you just have to keep your chin up.
Your wife loves you.
Your dog loves you.
The crowd here loves you.
Look at Dom... he is an inspiration....
PLEASE, find something in life that you like, give meaning to it.... it works..

take GOOD CARE, Carole
Wonderfulworld
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Post by Wonderfulworld »

Robbie I really admire you for saying honestly how you're feeling. I was only at EDSS 9 for about 2 weeks and those thoughts hit me during that time too and for some time after at EDSS 6. It is a pure sh!t place to be and I only dropped in for a visit at that EDSS. I am not religious but you are in my thoughts far away across the Atlantic that you'll be able to get into a trial or that there will be some let-up for you in the progression. <Hugs>
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TwistedHelix
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Joined: Fri Mar 25, 2005 3:00 pm
Location: Northamptonshire, England.

Post by TwistedHelix »

Hey Robbie,
Honestly, I've been where you are and I know that nothing anybody says can really lift you out of there: in fact, sometimes the more " positive" people try to be around you the more depressing it can get. There they are, telling you that at least you're lucky to live in a beautiful place, or have great friends, or you're still the same person you always were, and you're left silently screaming that it's not enough – no amount of " lucky", no number of " blessings" – nothing will ever, ever, make you feel better about losing the life you once had, (or the life you should have had).

The fact is, Robbie, as the others have said your words on these pages are incredibly valuable to thousands of people around the world who read them. They can see that it's OK to feel the way they're feeling and that they are not alone… you are their voice. I can imagine people who can't get through to their family about what it's like, pointing at the screen and saying, " that's what I've been trying to tell you!".

Nobody wants you to go, but nobody will judge you if you feel you have to leave. I really believe that talking of bravery and cowardice, right and wrong, the easy way or the hard choice, have no relevance when it comes to this. It is what it is.

Whatever you decide you will take my love, blessing and gratitude with you and I am sure that is true of many, many others. I truly, sincerely hope we are not saying goodbye,
Dom
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Terry
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Post by Terry »

Hey Robbie,
Sorry for the EDSS mismatch. I was hopeful. Yes, talk to your neuro.
I don't want you to give up. Maybe that is totally selfish of me but Robbie, I REALLY REALLY don't want you to give up. I am so sorry that it sucks. This is one f'd up disease.
This is the issue that I had the most trouble with when I was diagnosed. It was the number of suicides in MS. I have always loved living, and didn't want to imagine that I might hit a point that I didn't want to live anymore.
I know that it is a real possibility, and there you are, wondering if you might be getting there. You are not there yet I think because I can still hear you looking for answers. I really really hope you find some.
Terry
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carolew
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Post by carolew »

Robbie? are you there?
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MrsGeorge
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Post by MrsGeorge »

Robbie,

i wish I had the magic words to make it ok. I'm sorry about the mismatch for the trial but I hope something will come up for you.

In truth you are braver than I am, I can't bear to think about the future, it scares me too much. All I can do is pray for a miracle.

btw - thanks for those verses - it was exactly what I needed.
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Terry
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Post by Terry »

Anyone heard from Robbie?
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gwa
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Post by gwa »

Terry wrote:Anyone heard from Robbie?
No, but days sometimes go by before he posts.

gwa
robbie
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Posts: 1300
Joined: Thu Jan 27, 2005 3:00 pm
Location: Northern Ontario, Canada

Post by robbie »

still here , thanks for wondering.
Had ms for 28 yrs,
8.5 EDSS
SPMS, 54 yrs old
Taking it day by day
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carolew
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Posts: 554
Joined: Fri Nov 05, 2004 3:00 pm
Location: Ottawa, Ont. Canada

Post by carolew »

sigh of relief :?
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