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HOW CAN WE RAISE AWARENESS ABOUT ACUTELY ILL MSers

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    #16
    The Weekend Australian this Saturday has a long article in it about Betty Cuthbert, a sprinter, who won three Olympic Gold medals long ago. Then she got MS. She's been in a wheelchair for 46 years, and can now move only her left hand.

    There was nothing much in it about drugs or cures, or being angry, just Betty's beautiful smile.
    So it raised awareness, but didn't say anything about needing to find a cure for this horrible disease.

    Just serene acceptance and accepting your lot in life. No suggestion that anything could be done or needed to be done.
    Yes, well, thank-you sooo much, journalist.

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      #17
      It is nice that there is this board to 'air' our thoughts and varied opinions. That the Australian newspaper featured the story of Olympian Betty Cuthbert and her nearly 50 year fight with MS and ,sadly, didn't mention anything about the plight of MSer's worldwide is the 'kick in the pants' that is the 'status quo' perennially.
      I have an idea. We should get the NMSS to organize an 'MS March/Walk on Washington'. lol
      That will raise awareness !

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        #18
        “HOW CAN WE RAISE AWARENESS ABOUT ACUTELY ILL Msers?”

        Sorry to sound so cynical, but why? The public doesn’t want to know about us, the NMSS doesn’t care that much about us, not enough money for Big Pharma to make off us, even family and friends get sick and tired of hearing about us.

        “…when a celebrity or some national figure is diagnosed with MS, you may hear. However, once progressive, you no longer hear or see anything about them. Once it becomes progressive, MS loses the face and spokesperson.”

        Truer words were never spoken.

        “It always appears to me that there is no interest to 'wage war' on MS because there's no cash profit to be gained.”

        Amen.

        “It is nice that there is this board to 'air' our thoughts and varied opinions.”

        Thank God for these boards and all of you.
        Seattle, WA
        Dx 05/14/10, age 55, RRMS, Now PPMS
        Avonex 5/10-9/11; Copaxone 20, 9/11-4/13; Tecfidera 4/13-7/15; Copaxone 40, 9/15 -present

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          #19
          I think the problem is they don't even know where to start. They don't have any real idea what causes it. All the treatments seem designed to tinker with varying degrees of force and effectiveness with our immune systems.

          I remember how excited they were about the arrival of oral medication, as though having to give themselves an injection was the main concern of Ms-ers. Yeah, right.

          Unless I am very much mistaken the main concern is MS-ers is disease progression. All the energy and money seems to have been spent on developing oral drugs and reducing the number of relapses.

          Well, yes, fair enough, I suppose, but it seems to be the case that relapses and disability progression don't go hand in hand.
          And there is still next to nothing (probably actually nothing) for PPMS.

          I'd march on Washington, but I'm flat out walking to the bathroom.

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            #20
            THANKS FOR ALL THE RESPONSES AND GREAT DISCUSSION.

            I WAS THINKING SOMEONE CAN START A PETITION OR WE CAN WRITE TO THE MSSOCIETY AND ASK FOR MORE REPRESENTATION IN THEIR MARKETING, ADVERTISING AND RESEARCH. THEY GET SO MUCH MONEY FROM SOME OF US, OUR FRIENDS, FAMILIES, FUNDRAISERS ON OUR BEHALF.....WHY SHOULD IT ALL GO TO THE MOST HOPEFUL GROUP?

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              #21
              DeeElle,
              I would say that sending an email to the NMSS would be a good idea. I have had many phone conversations with the local chapter representative, MS navigator. You need to get in touch the local chapter in your area and let them hear your thoughts. If you receive any of the print publications, you need to get your thoughts to the editors of these publications. Don't be afraid to write them. Good luck

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                #22
                Thank you so much to everyone who posted in this thread. It was both sad and nice to read so many other people who think/feel like I do. Made me wish there was an agree button for each post (like button on facebook).
                Diagnosed December 20, 2011
                Avonex: February 10, 2012 - March 16, 2013
                Tysabri: June 28, 2013 - May 23, 2014
                Betaseron: August 15, 2014 - March 10, 2015
                Aubagio: June 18, 2015 - current

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                  #23
                  Originally posted by LostCupcakes View Post
                  Thank you so much to everyone who posted in this thread. It was both sad and nice to read so many other people who think/feel like I do. Made me wish there was an agree button for each post (like button on facebook).
                  I would like a "like" button too. I am a PPMS er for 18years. I am 68 and spend my days in a wheelchair . Even if a cure was found yesterday it is too late for me. I have canceled all my memberships and periodicals for MS cause "walking for MS and getting pledges for $118.00" is not going to do it for me. I have spent so much money on myself not sure I'm going to have enough left. Think I need someone for night help now. Meds and turning me on my side.
                  This is never talked about. Instead someone whines about using a CANE! My cane days were about 6years ago! I'd love being able to just use a cane.
                  Too much whining and sniveling "I love that word".

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                    #24
                    MAybe for the next MS walk, or MS Bike Ride (how ironic) we Should all enter in our wheel chairs and have a healthy person push us. Now THAT would make a statement!

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                      #25
                      Originally posted by Thinkimjob View Post
                      whereas with MS, it's all bouncy, blonde mountain climbers thriving on their DMDs, no cure expected.
                      This captures my sentiments exactly. I pretty much toss most of the literature from the NMSS into the trash. "MS isn't going to beat me!!!!". Yes, it is sweetie.

                      What makes me bitter is the huge industry that feeds off supplying false hope to desperate people. There is a reason all the focus is on drugs to treat Relapsing- Remitting MS: the claims can't be falsified. Nor can the claims to "slow down" the progressive varieties. How would you ever know what would have happened had you not taken them? It appears to me that the drug industry funds the National MS Society's magazine. Do we really think they are going to be taking a hard look at these claims?

                      And how about all the neurologists who collect $250 plus per visit to do little more than coo sympathetically and maybe prescribe some antispasmodics. Or write for repeated MRI's which provide no actionable information but only run up the profits of the institutions which perform them.

                      I realize that the phenomena of charlatans bilking desperate people with incurable diseases by preying on their hopes is not unique to MS. But is is still galling.

                      The bottom line is that this disease cannot even be diagnosed with certainty. It is primarily a diagnosis of exclusion. No one knows what causes it or how to stop it.

                      As far as "Awareness", what in the world is that supposed to accomplish? It's just another feel-good placebo. Research is a business. Searching for a cure for relatively low-runner diseases like MS is not an investment that will be rewarded by shareholders. The funding pittance that the MS Society tosses in is a symbolic token.

                      Well, as I read this over it sounds kind of negative I am the sole caregiver for my wife who is paralyzed from the neck down, is in constant, unremitting, refractory neuropathic pain, is losing her vision, ability to speak, and ability to swallow; has a superpubic catheter and cannot move her own bowels but needs to be disimpacted multiple times a day; has contractures which are causing decubitis ulcers; is depressed and constantly speaks of suicide; did I miss anything?

                      I don't feel the Government or anybody else owes us "finding a cure". I am not bitter that they are not launching a "moon program" to find it. This is simply the luck of the draw and many people suffer in isolation with the same or worse. Such is life. I am grateful for the life we had prior to this and grateful for any help we get. But I despise what I view as the profiteers who hold out false hopes and false treatments. The money would be better spent providing sufferers with better equipment, better palliative care, better caregiver training, and healthcare aides for caregiver assistance to help keep their loved ones from going into the hell-holes that are nursing homes.

                      Oh, and before I forget, spare me all the "Caregiver Support Groups" who are burdened with extra housework and chores or "dealing with" their spouse's fatigue and bad moods. LOL! They are the Caregiver equivalent of the blonde mountain climber.

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                        #26
                        Everyone should read sjc314's magnificent post.
                        It should be emailed to every politician and every MS charity in every country.

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                          #27
                          Originally posted by palmtree View Post
                          Five years ago when I was diagnosed, I could never imagine not being able to scamper around at my own free will.

                          I wonder why this disease attacks the legs so much. I think. ' I could do it before. Why can't I just do it?

                          Isn't that issues start down at feet/legs then move up from there? Mine did. But an early flare did have face numbness on one side only. Or many might have optic issues but physical losses start down there. Upper body strength is secondary.

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                            #28
                            Originally posted by dowens View Post
                            Isn't that issues start down at feet/legs then move up from there?
                            A lot of neurological diseases present in the limbs first because they are controlled by the longest nerve fibers and are the farthest away thus providing more opportunities for mischief. Neuropathies, for example, commonly start in the hands and feet

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                              #29
                              How can we raise awareness?

                              By doing exactly what DrMarc did in his post where he documented his partner on YouTube.

                              Social Media is one of the quickest ways to get something out there.

                              IMO...only my opinion, throwing money at the NMSS is a waste of time and money. People with MS need to advocate for this disease themselves and be creative about it.

                              I would like to see the NFL or NBA wear Orange Shirts for MS Awareness. I would like to see something like The Ice Bucket Challenge for MS. I would like to see more celebrities speak out on the disease...not just those with MS.

                              Just my 2 cents...so it is not worth much.
                              Katie
                              "Yep, I have MS, and it does have Me!"
                              "My MS is a Journey for One."
                              Dx: 1999 DMDS: Avonex, Copaxone, Rebif, currently on Tysabri

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                                #30
                                Originally posted by sjc314 View Post
                                But I despise what I view as the profiteers who hold out false hopes and false treatments. The money would be better spent providing sufferers with better equipment, better palliative care, better caregiver training, and healthcare aides for caregiver assistance to help keep their loved ones from going into the hell-holes that are nursing homes.
                                I'm sorry for the struggles that you both are going through — my heart hurts for all of us. At my recent doctor appointment I expressed how frustrated I was at the lack of effective treatments especially for those in later stages of the disease. He said that he shared my frustrations. I asked him if there was any good talk at the recent American Association of Neurologists meeting and he said there was "a lot of talk" but nothing to get excited about in the pipeline. Very few of the drugs have helped me, and I feel abandoned.

                                But I'm giving every poster in this thread a high-five and using every curse word I can think of towards organizations and cultural and societal norms that keep us silent, shamed and seemingly powerless.

                                I think the best activists are ourselves — thinkimjob knows that I was trying to get a podcast put together about some of these very topics. I don't give a rat's patootie if nobody else cares and wants to hear about it – we do, we matter, and we need to do this for ourselves.

                                The trouble is, very few have the energy to do it. The Wheelchair Kamikaze pointed that out to me (big duh moment for me ) I'm still excited about the idea of it but realized I just can't do it myself. My local chapter of the MS Society was very interested in the planned podcast, but this is before they heard it. I would not have been kind about them and would not have held back LOL

                                **Moderated in compliance with MSWorld Guidelines. Disguised profanity is not allowed**

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