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Question of the Month (March ’13): Awareness
March is MS Awareness Month in the U.S. but we live with it year-round.
IF THERE WERE JUST ONE THING YOU WOULD WANT PEOPLE TO BE AWARE OF ABOUT MULTIPLE SCLEROSIS WHAT WOULD IT BE? We know it might be hard to narrow it to one thing, but give it a try. No thought is too big or too small to share here.
Our Monthly Question focuses on a specific topic. There are no right or wrong answers -we just want to hear about your experiences, whether you are a veteran of this forum or you are new and have been lurking, waiting for the inspiration to share your thoughts.
Please let us know if you have a question you would like pondered some month.
Your community leaders
IF THERE WERE JUST ONE THING YOU WOULD WANT PEOPLE TO BE AWARE OF ABOUT MULTIPLE SCLEROSIS WHAT WOULD IT BE? We know it might be hard to narrow it to one thing, but give it a try. No thought is too big or too small to share here.
Our Monthly Question focuses on a specific topic. There are no right or wrong answers -we just want to hear about your experiences, whether you are a veteran of this forum or you are new and have been lurking, waiting for the inspiration to share your thoughts.
Please let us know if you have a question you would like pondered some month.
Your community leaders
When I was around 12 I would spend my summers at my Aunts house to help take care of my cousin that had MD. This would allow her to get out of the house once in a while (Get her hair done, visit a friend, etc). My cousin was the same age as me (1 week between our birthdays) and was DX'ed when he was 6. I spent 3 summers doing this until we moved from the area. In all of the time I spent with him I never heard him complain once.
So My vote would be" just because I am not complaining about pain doesn't mean I'm not in pain".
Dennis
So My vote would be" just because I am not complaining about pain doesn't mean I'm not in pain".
Dennis
that our pain and symptoms are not always visible to everyone..........
but we suffer from them and have to deal with them just the same
but we suffer from them and have to deal with them just the same
this has been a great question - thanks for all the ideas of what we might want to share with others. I'm trying to figure out if there is a theme in all of these responses.
There are so many things I would like to tell people, but if I have to pick ONE...it would be...
I don't 'know' how I will feel tomorrow or later today for that matter....
Making plans ahead of time is never guarenteed.
Laurie
I don't 'know' how I will feel tomorrow or later today for that matter....
Making plans ahead of time is never guarenteed.
Laurie
I'd want people to know that just because I don't sit around complaining every day about my symptoms, that I'm symptom free. Sure when you see me, I'll probably be smiling, because that's just my nature, but don't take that to mean that I'm OK.
On the contrary, they don't know how much fatigue I have and that I may have been up half the night hurting from spasticity. They've never seen me try to walk up a flight of stairs or walk up a hill. They don't know how difficult it is now, cognitively, to do my job, or that I can't go to the bathroom like a "normal" person, etc....
On the contrary, they don't know how much fatigue I have and that I may have been up half the night hurting from spasticity. They've never seen me try to walk up a flight of stairs or walk up a hill. They don't know how difficult it is now, cognitively, to do my job, or that I can't go to the bathroom like a "normal" person, etc....
Can I have two?! Pretty please?
Here in Ireland, the media's tone of late has been very discouraging. A woman with MS named Marie Fleming has sued for the right to die (the High Court found against) and she was often referred to as 'terminally ill'. I certainly don't dispute she is suffering, but it is wrong to have MS referred to as a terminal disease. Also, a recent case of death through neglect (Evelyn James who had MS) has garnered suspended sentences for a daughter and her partner.
This has plastered the country with headlines regarding the grimmest of the grim. We can live full lives! Lives with challenges, yes. But for these extreme examples to have overshadowed everything positive has caused distress for many in Ireland, not to mention caused extreme concern among the newly diagnosed. I guess in a round about way, I'm asking the media to have a bit of cop-on. Perhaps a bit of balance wouldn't go astray!
For my second, I'd actually like to address those with MS or at some stage along the diagnostic road. I would want people to know (or have compassion for) that a lightning-fast, straightforward, slam-dunk diagnosis may not have the frustrations and stresses of limbo-land, but it can be very disorienting and frightening and also need support. To go from perfect health one day to an in-patient situation to drugs without even having had the time to google things, well it's tough too. It may not be akin to climbing a mountain or running a marathon, but if you didn't sign up for a trip to the amusement park, finding yourself on the drop tower isn't actually fun or something you're apt to feel thankful for either.
Here in Ireland, the media's tone of late has been very discouraging. A woman with MS named Marie Fleming has sued for the right to die (the High Court found against) and she was often referred to as 'terminally ill'. I certainly don't dispute she is suffering, but it is wrong to have MS referred to as a terminal disease. Also, a recent case of death through neglect (Evelyn James who had MS) has garnered suspended sentences for a daughter and her partner.
This has plastered the country with headlines regarding the grimmest of the grim. We can live full lives! Lives with challenges, yes. But for these extreme examples to have overshadowed everything positive has caused distress for many in Ireland, not to mention caused extreme concern among the newly diagnosed. I guess in a round about way, I'm asking the media to have a bit of cop-on. Perhaps a bit of balance wouldn't go astray!
For my second, I'd actually like to address those with MS or at some stage along the diagnostic road. I would want people to know (or have compassion for) that a lightning-fast, straightforward, slam-dunk diagnosis may not have the frustrations and stresses of limbo-land, but it can be very disorienting and frightening and also need support. To go from perfect health one day to an in-patient situation to drugs without even having had the time to google things, well it's tough too. It may not be akin to climbing a mountain or running a marathon, but if you didn't sign up for a trip to the amusement park, finding yourself on the drop tower isn't actually fun or something you're apt to feel thankful for either.
It is a Neurological Disease. A lot of people do not get that or understand what Neurological means.
But then people think all cancer is curable as well. Some forms are not.
People want to tell you you are doing well because they think that is what they are supposed to do.
Alex
But then people think all cancer is curable as well. Some forms are not.
People want to tell you you are doing well because they think that is what they are supposed to do.
Alex
I say "ditto " to twopack 's comments. My world changes daily and even though "I look good" especially since I dropped 20 pouds unintentially doesn't mean I FEEL good!
The Spoon Theory ,twopack referenced, is on point and everyone who hasn't read it and/or shared it with those close to you and perhaps some acquaintaces should.
And lastly, the often mentioned, we are NOT all alike.
Ren
The Spoon Theory ,twopack referenced, is on point and everyone who hasn't read it and/or shared it with those close to you and perhaps some acquaintaces should.
And lastly, the often mentioned, we are NOT all alike.
Ren
"What you see isn't what I got." :-)
Just because I look fine, doesn't mean I am.
Kyle
Just because I look fine, doesn't mean I am.
Kyle
Did anyone else catch the Orange crowd on the plaza outside the Today Show studios in NYC on Monday? That was a great way to start awareness week!!!
I want them to know that having MS means I live each day knowing an unwanted surprise might be waiting around each corner called tomorrow.
But even without Big surprises my ability to do things will vary from day to day and - No! - I can’t always predict which days will be good to plan group activities. I want them to understand that cancelling out isn’t the same thing as backing out. Hey, I’m disappointed too. So much so, that I avoid planning activities to begin with anymore.
I wish people were familiar with The Spoon Theory by Christine Miserandino - an analogy of what it’s like to live with sickness or disability. They might gain a better appreciation of their own good health as well as understand my situation a little better.
Anyone not familiar with this piece can find it at
http://www.butyoudontlooksick.com/wpress/articles/written-by-christine/the-spoon-theory/
But even without Big surprises my ability to do things will vary from day to day and - No! - I can’t always predict which days will be good to plan group activities. I want them to understand that cancelling out isn’t the same thing as backing out. Hey, I’m disappointed too. So much so, that I avoid planning activities to begin with anymore.
I wish people were familiar with The Spoon Theory by Christine Miserandino - an analogy of what it’s like to live with sickness or disability. They might gain a better appreciation of their own good health as well as understand my situation a little better.
Anyone not familiar with this piece can find it at
http://www.butyoudontlooksick.com/wpress/articles/written-by-christine/the-spoon-theory/
Want them to know that it's the damage in our spinal cord, and brain that cause us problems. But, life is not over and we cannot be compared completely to others with MS. We are all different.
I think my one thing would be -
Having MS doesn't make me a different person, it just sometimes makes me have to do things differently.
Having MS doesn't make me a different person, it just sometimes makes me have to do things differently.
That the 'remitting' part of RRMS is somewhat of a misnomer for many of us. I've never had a complete remission.
After years of teaching children with special needs I always knew that no 2 people with the same classification were exactly alike. All conditions have their same major symptom in common but the range of differences vary greatly as well. This is very true for MS. Some people think of MS and people in wheelchairs. Due to new meds this is not as common anymore. We do have many physical disabilities such as mobility, vision, speech, tremors, spasticity and large and fine motor difficulties. Of course there are many "invisible" symptoms as well such as pain, fatigue, cognitive, memory,andsensory.
Add how unpredictable MS is due to flre ups and The complexity of this disease unfolds. You really can't compare one persons MS experience to another.
Add how unpredictable MS is due to flre ups and The complexity of this disease unfolds. You really can't compare one persons MS experience to another.
The biggest question I got while going through the diagnosis process was "why don't they just run a blood test and dx you? Why does it take so long? And can't they just give you some drugs to make it go away?"
There are no blood tests for this disease and I concur with Mike, there is no cure.
I also agree with Forty! I am in my 40's and get all the "dirty" looks for parking handicapped - even had a woman tell me to move my car - and stop using my grandmothers handicapped tag - seriously people I would love to be able to park further away and get the exercise!
There are no blood tests for this disease and I concur with Mike, there is no cure.
I also agree with Forty! I am in my 40's and get all the "dirty" looks for parking handicapped - even had a woman tell me to move my car - and stop using my grandmothers handicapped tag - seriously people I would love to be able to park further away and get the exercise!
Just because I can walk and don't look "disabled" when I park in a handicapped space doesn't mean I don't have an issue parking in that huge parking lot and remembering where I parked after I do my shopping.
Just because someone hasn't been diagnosed yet, doesn't mean they don't have MS.
When I told my sister that the neurologist didn't diagnose me yet, she said "So, you don't have MS then"
When I told my sister that the neurologist didn't diagnose me yet, she said "So, you don't have MS then"
COMMUNITY LEADER
MS awareness 'week' in Australia is at the end of May.
I've been involved with disabilities for most of my life and there is a constant sound bite revolving, 'people with disabilities have the right to be treated the same as anyone else'. I do strongly believe in that but the other day I heard someone put a slightly different twist to it, which is very much in line with how I generally think.
".....its not just about people with disabilities having the right to be treated the same, the point is that people with disabilities have the right to be different...."
So with that thought in mind, I'd like people to be more aware of how much negativity is associated to disability not just in MS but overall, and where ever possible to challenge their thinking!
Please stop automatically assuming a person is drunk because of the way they are walking or talking. Please stop assuming people with a disability are incapable of doing [insert what ever]. Please stop thinking a person with disability only needs to try harder at [insert what ever] and they wouldn't have that problem any more.
Please stop talking to people with disabilities like everyone is hearing impaired or mentally disabled, how anyone can assume talking slower and louder is in anyway appropriate behaviour because a person has mobility issues is totally beyond my comprehension, and yet it happens.
I could go on but to end this thought I'd like people to be aware of urban myths. To stop and think before they open their mouth, please don't tell a person with MS about a friend of a friend, who's neighbours uncle, twice removed (we've all heard the stories) was dx with MS but they did [insert cure] and they don't have MS any more. The bottom line is if they were 'cured of MS' they never had MS in the first place, so please stop and think before telling these kinds of stories because they are simply not true!
Cheers..........JJ
I've been involved with disabilities for most of my life and there is a constant sound bite revolving, 'people with disabilities have the right to be treated the same as anyone else'. I do strongly believe in that but the other day I heard someone put a slightly different twist to it, which is very much in line with how I generally think.
".....its not just about people with disabilities having the right to be treated the same, the point is that people with disabilities have the right to be different...."
So with that thought in mind, I'd like people to be more aware of how much negativity is associated to disability not just in MS but overall, and where ever possible to challenge their thinking!
Please stop automatically assuming a person is drunk because of the way they are walking or talking. Please stop assuming people with a disability are incapable of doing [insert what ever]. Please stop thinking a person with disability only needs to try harder at [insert what ever] and they wouldn't have that problem any more.
Please stop talking to people with disabilities like everyone is hearing impaired or mentally disabled, how anyone can assume talking slower and louder is in anyway appropriate behaviour because a person has mobility issues is totally beyond my comprehension, and yet it happens.
I could go on but to end this thought I'd like people to be aware of urban myths. To stop and think before they open their mouth, please don't tell a person with MS about a friend of a friend, who's neighbours uncle, twice removed (we've all heard the stories) was dx with MS but they did [insert cure] and they don't have MS any more. The bottom line is if they were 'cured of MS' they never had MS in the first place, so please stop and think before telling these kinds of stories because they are simply not true!
Cheers..........JJ
I was going to say pretty much the same thing: If you've seen one case of MS, you've seen one case of MS.
ess
ess
That it's different for everyone. Just because you get better doesn't mean that you can't have problems down the line or just because you have a flare, doesn't mean that you won't every get better. Just because I have MS it doesn't mean that I am some sort of helpless invalid. It's different for everyone. Also just because someone looks great, it doesn't mean that they necessarily feel great.
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