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-   -   Reality show has new person with MS (https://www.neurotalk.org/multiple-sclerosis/214351-reality-person-ms.html)

Sparky10 01-04-2015 10:59 PM

Reality show has new person with MS
 
Alaska The Last Frontier is the show. It centers around the the Kilcher family living off the grid in Alaska. Tonight (Sunday 1/4) a new Kilcher couple was brought into the show. Shane, a son of the Kilcher patriarch and his wife, whose name I did not catch. But I did catch that Shane's wife was recently diagnosed with MS.

In the show Shane and wife are just beginning the process of building a house from scratch. They have about 22-25 loads of rock to load and move from the shore to their homestead, which will be used as the house foundation.

I like the series. It is done realistically and tastefully, not "set up" and controversial like some other reality shows. I hope to see more of this woman with MS, because she has quite the struggle ahead of her. Life off the grid in Alaska is very hard work.

doydie 01-05-2015 01:03 AM

I also like shows that put people with MS in a good light. It can be educational but it can also be bad for people like Erin and others who have many family members think they are faking it.

Lumia_black 01-05-2015 09:05 PM

Quote:

Originally Posted by doydie (Post 1116423)
I also like shows that put people with MS in a good light. It can be educational but it can also be bad for people like Erin and others who have many family members think they are faking it.

Ughhh I try to think what this means, but damn head can't get wrapped around it. Would yo uplease simplify this for me? I'm guessing you're saying, because the woman in the show has MS yet she can haul stone with her husband, makes her look like she's faking it?

Lumia_black 01-05-2015 09:55 PM

Quote:

Originally Posted by Sparky10 (Post 1116406)
Shane, a son of the Kilcher patriarch and his wife, whose name I did not catch.


It's Kelli.

Starznight 01-06-2015 01:49 PM

I think the problem concerning family member belief that others are faking it, is more in reference to the fact if the lady on TV can haul stones, but Erin can't get out of bed that Erin is the one faking it.

It's a rather messed up disease where there are some like me who went from sporty super athletic, to wheelchair, to crutches, to cane, to wheelchair, to cane.... Boingy boingy.... Who have days where we're 'normal' and days where we're good for little else than warming the bed... And then others who shoot straight down to the depths of immobility never to return, and then those who you would never know there was anything wrong.

The problem is in the quest to obtain 'normalcy' many family members and friends would like to believe there is nothing wrong, it's not just with MS, it's even seen a lot with cancer patients, but essentially they find the one person who appears 'normal' and use that as the guideline to view their family member through.

When the person with MS does anything outside their "guideline" then it must not be true. Cruel as it sounds many people find it easier to believe their family or friend is just "seeking attention" than believing anything is wrong.

Unfortunately, that is human nature, our brains are hard-wired to protect our pysce and no matter how irrational it may be at times, it will seek out the best explanation regardless of the evidence. It's also why the first and easiest step of grief is denial and why so few ever truly make it to acceptance.

It's a bit hurtful to those of us whose family members are perpetually stuck in that phase, but there's little else one can do but merely accept it for what it is. If nothing else regardless of how hurtful their words and even actions may be, it's because they do love you but are powerless and lacking in a strong pysce to move on and accept it.

MSbelle 01-06-2015 02:08 PM

Quote:

Originally Posted by Starznight (Post 1116719)
I think the problem concerning family member belief that others are faking it, is more in reference to the fact if the lady on TV can haul stones, but Erin can't get out of bed that Erin is the one faking it.

It's a rather messed up disease where there are some like me who went from sporty super athletic, to wheelchair, to crutches, to cane, to wheelchair, to cane.... Boingy boingy.... Who have days where we're 'normal' and days where we're good for little else than warming the bed... And then others who shoot straight down to the depths of immobility never to return, and then those who you would never know there was anything wrong.

The problem is in the quest to obtain 'normalcy' many family members and friends would like to believe there is nothing wrong, it's not just with MS, it's even seen a lot with cancer patients, but essentially they find the one person who appears 'normal' and use that as the guideline to view their family member through.

When the person with MS does anything outside their "guideline" then it must not be true. Cruel as it sounds many people find it easier to believe their family or friend is just "seeking attention" than believing anything is wrong.

Unfortunately, that is human nature, our brains are hard-wired to protect our pysce and no matter how irrational it may be at times, it will seek out the best explanation regardless of the evidence. It's also why the first and easiest step of grief is denial and why so few ever truly make it to acceptance.

It's a bit hurtful to those of us whose family members are perpetually stuck in that phase, but there's little else one can do but merely accept it for what it is. If nothing else regardless of how hurtful their words and even actions may be, it's because they do love you but are powerless and lacking in a strong pysce to move on and accept it.

You are very wise. Most people have a very hard time coming to terms with WHY so many people don't believe they're sick. To be able to explain eloquently why this is, and share it, is a beautiful thing. Thank you.

For me, I'm constantly worried that family or friends will think I'm using MS to my advantage (to get out of cleaning, get out of driving places etc). The opposite could not be more true, but it's a fear. I'm SO thankful to be surrounded by people who really do care about me and don't think I'm faking. But I have seen other with MS who are not so lucky. I've heard the chatter behind their backs ("she's fine, and then her friend drops by and she all of a sudden walks with a limp") and I can't help but think that might be happening to me as well without me hearing it.

As if this disease isn't bad enough without people thinking we're deceiving them. I **wish** I was deceiving people, I **wish** I was a hypochondriac. Some psychotherapy and I'd be on the road to being ok again.

Lumia_black 01-06-2015 03:16 PM

Quote:

Originally Posted by Starznight (Post 1116719)
I think the problem concerning family member belief that others are faking it, is more in reference to the fact if the lady on TV can haul stones, but Erin can't get out of bed that Erin is the one faking it.

It's a rather messed up disease where there are some like me who went from sporty super athletic, to wheelchair, to crutches, to cane, to wheelchair, to cane.... Boingy boingy.... Who have days where we're 'normal' and days where we're good for little else than warming the bed... And then others who shoot straight down to the depths of immobility never to return, and then those who you would never know there was anything wrong.

The problem is in the quest to obtain 'normalcy' many family members and friends would like to believe there is nothing wrong, it's not just with MS, it's even seen a lot with cancer patients, but essentially they find the one person who appears 'normal' and use that as the guideline to view their family member through.

When the person with MS does anything outside their "guideline" then it must not be true. Cruel as it sounds many people find it easier to believe their family or friend is just "seeking attention" than believing anything is wrong.

Unfortunately, that is human nature, our brains are hard-wired to protect our pysce and no matter how irrational it may be at times, it will seek out the best explanation regardless of the evidence. It's also why the first and easiest step of grief is denial and why so few ever truly make it to acceptance.

It's a bit hurtful to those of us whose family members are perpetually stuck in that phase, but there's little else one can do but merely accept it for what it is. If nothing else regardless of how hurtful their words and even actions may be, it's because they do love you but are powerless and lacking in a strong pysce to move on and accept it.

That is nicely writtn thanks.

kicker 01-08-2015 10:04 PM

Sometimes the only good thing about the wheelchair is it's so evident that something is wrong. DH and I joke that I'm everyone's favorite crip. Doing anything makes me extraordinary!


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