Monday, October 15, 2012
Multiple Sclerosis: The Ugly Truth
For much of the healthy public, the face of MS comes in the form of celebrities who suffer from the disease. At the current time, here in The States the most prominent MS representatives are probably Ann Romney (wife of presidential candidate Mitt Romney), Jack Osbourne, and Montel Williams. Mr. Williams in particular has become a full-time MS activist, bringing welcome publicity to Multiple Sclerosis as he chronicles his struggles to fight the disease. I have nothing but respect for anybody battling this heinous scourge, and I don’t mean to belittle anybody’s misfortune, but I often find myself wishing that the public could see much deeper into the horrors that MS can inflict, beyond the relatively robust Mrs. Romney, the newly diagnosed young Mr. Osbourne, and the charismatic Mr. Williams.
The following snippet of an Associated Press article on Mrs. Romney’s experiences dealing with MS is typical of how the mass media often portrays Multiple Sclerosis:
“The wife of Republican presidential nominee Mitt Romney said Wednesday that her love of horses helped her overcome her fear that Multiple Sclerosis would put her in a wheelchair.”
As frightening as the prospect of being put in a wheelchair may be to the general public, the above quote significantly downplays just how monstrously devastating the effects of Multiple Sclerosis can be. I applaud any publicity that shines light on the disease, and certainly, it takes courage for those in the public eye to speak openly about their illness, but the beast that is MS can do far worse than leave someone reliant on a wheelchair. This public face of MS most often provides only a faint glimmer into the hellish world of those more severely afflicted with Multiple Sclerosis, a reality that can shock even those suffering from lesser ravages of the disease.
As a truly distressing depiction of the dark side of MS, the plight of former Mouseketeer and teenybopper starlet Annette Funicello stands in stark contrast to the sanitized version of the disease that is most familiar to the general public. Mrs. Funicello has been decimated by Multiple Sclerosis, its wicked impact leaving this once vibrant woman — who several decades ago epitomized exuberant youth — trapped in a living nightmare, her body gnarled and fully frozen while her mind presumably remains intact. For those who can bear to watch, Canadian television’s CTV network recently produced a video profile of Annette Funicello’s current condition, and her loving husband’s never-ending struggle to find some treatment to help relieve her suffering (click here for part one, and here for part two). Be forewarned that the content of these videos may scare the living shit out of you. Please don’t watch if viewing the worst that MS can do might have deleterious effects on your own ability to deal with the disease.
The past two weeks have not been kind to quite a few of my MS friends. One dear woman, who is amongst the sweetest souls I’ve ever had the pleasure to know, recently lost the ability to swallow, a development that necessitated the surgical implantation of a feeding tube into her abdomen. She will never again experience the simple pleasure of eating. Another friend, an accomplished artist who uses MRI images to make compelling pieces of visual art, informed me via email that she is now for all intents and purposes a quadriplegic, and can no longer use her own hands and fingers to bring her creative visions to realization. Instead, she “choreographs” a helper, providing verbal instructions to an able-bodied person in an attempt to maintain her artistic output. The anguish came through loud and clear in the voice of a big hearted man who has seen the disease rip apart not only his body but family and fortune too, while he haltingly told me that he had lost the ability to hold himself upright in a seated position, and has suddenly been plagued with fecal incontinence.
Through my many years of actively taking part in online Multiple Sclerosis forums, I’ve borne virtual witness to the steady decline and ultimate demise of more patients than I can bear to recall. The pattern has become hauntingly familiar; the slowly dwindling chronicling of ever mounting indignities and disabilities, and then a silence speaking loudly of total incapacity and sometimes even death. Occasionally, a family member will kindly put up a post informing the deceased’s online friends of their passing, but more often than not the person merely vanishes into the ether. I daresay my own online activities have similarly diminished as my disease (which still defies definitive diagnosis) has advanced, hopefully not a harbinger of things to come.
This is the true face of MS, a face little seen by the public at large. Of course, many patients suffer a far milder course of the disease, but a significant number do not. As much good as celebrity MS ambassadors can do, I fear they don’t convey the true depravity of the illness, and may in fact serve to lull the public into a sense of complacency regarding Multiple Sclerosis. Almost always, mention of the condition is accompanied by assurances of astonishing medical breakthroughs, of researchers on the verge of finding a cure, of proclamations that now is the best time in history to be diagnosed with MS. What’s left unsaid is that forms of the disease remain completely untreatable, and the pharmaceutical remedies available to those that are treatable are hugely imperfect, at best. An actual cure remains a distant dream, as the vast majority of research dollars are directed at developing new and supposedly better ways of suppressing the aberrant immune response allegedly responsible for the devastating effects of MS, resulting in drugs that can improve the quality of life of relapsing remitting patients, while quite possibly doing nothing to stem the actual progression of their illness. These drugs do not a whit to cure the disease, even as they reap huge profits for the companies that manufacture them.
The medical research model that has evolved in the United States is quite simply broken, warped by the corrosive influence of blockbuster drugs generating fantastic profits. Over 75% of medical research done in the US is funded by the major pharmaceutical companies, all of which are publicly traded entities. As such, they are mandated by law to be beholden to their stockholders, not to the patients taking their products. The job of a drug company CEO is to constantly expand his company’s bottom line, by endeavoring to create an infinite stream of ever-increasing earnings. Thus, research dollars flow to projects most likely to result in huge profits, and these projects tend to follow the lead of previously successful ventures. Scientific researchers, in need of steady income, are of course drawn to projects that will receive ample funding, and so a dysfunctional cycle has developed, one in which good people simply doing their jobs perpetuate a system of medical research that has failed to cure any major disease in decades. As the stream of government research funds dries up, due to harsh economic times and shifting political philosophies, the situation becomes even more acute. As the saying goes, the road to hell is paved with good intentions.
Perhaps if the public was privy to the hideous reality of those most severely afflicted with MS, and was made to understand that such cases are not mere outliers, their revulsion would spur an outcry that might shatter the status quo. It’s not as if there are no funds available to fuel the research efforts needed to conquer horrendous illnesses. The US Air Force’s newest jet fighter, the F-22 Raptor, comes in at a cost of approximately $350 million per airplane. The F-22 is a wondrous piece of technology, invisible to radar and able to cruise at supersonic speeds. It was originally designed to fight an adversary that no longer exists, the Soviet Union. The Air Force has 187 of these fighters. Would our nation’s defense be significantly hampered if the Air Force possessed only 184 of them? The roughly billion dollars saved could certainly fund a concerted national research effort that might rid mankind forever of diseases whose cost in human misery is incalculable. It’s simply a matter of priorities, and in the language of World War II GIs, the priorities of our society are FUBAR (Fucked Up Beyond All Recognition).
I’m constantly amazed at the courage, bravery, and fortitude displayed by the MS patients I’ve come to know, whose grit and determination serve to gird my own. If only our national zeitgeist would take its cue from the steadfast heroism of those afflicted with terrible diseases and those who care for and love them, and raise an outcry demanding that our nation flex its immense intellectual and financial muscle to find ways to better human life, rather invent technological marvels intended to destroy it. The generals could still have their high-tech toys, only a wee bit fewer of them. Perhaps if MS and other horrendous diseases were portrayed in their full horror, and not in the sanitized versions commonly depicted by our mass media, a change in priorities might be possible. There is a vast Holocaust happening just beyond the eyes of the public, a Holocaust that will likely continue until that public is forced to look upon the contorted faces of the afflicted, and is made to understand such a fate could very well be their own. As John Donne wrote centuries ago, “Ask not for whom the bell tolls, it tolls for thee…”
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Well said Marc!ReplyDelete
We all know you can craft a sentence or a paragraph like nobody else. But perhaps the most important service that you provide for the MS community is your ability to take vague ideas that have been bouncing around in all of our heads and summarize them for us into a powerful and thoughtful essay.
Personally, I decided not to watch the Annette Funicello video. Since I am an 8.2ish on the EDSS scale, and I suppose she is a 9.0 or 9.5, seeing what my future holds is probably not what I need right now, but thanks for the offer :-)
Thanks for the praise, Mitch. Coming from a friend and fellow MS blogger, it means a lot.Delete
If I had to guess, I'd say Annette's EDSS score must be somewhere around 9.8. I literally gasped when they first showed her condition in the video.
I did watch the CTV program of Annette Funicello, and it was like being hit with a stun gun repeatedly.ReplyDelete
A very insightful and honest post once again Marc. Thank you.
I too :'(Delete
The stun gun metaphor works nicely, as her condition is truly shocking.Delete
I was worried that this post might be a little too harsh, and upset too many people. I'm glad most seem to have found it at least somewhat compelling. Getting the truth out is important, although it's not always comfortable.
Yeah it was pretty rough seeing her this way. I felt this too as if someone hit me in the head and chest with a hammer. Growing up in another generation we did not see her as the teen queen though she will always be our Queen of the Mouseketeers, my generation saw her as the sweetest mom in the world. Now 40 years old looking back over 2 painful revelations about this lady.One she suffered this way and two sadly she passed away recently. I am supporting all of you with this condition fully. firstname.lastname@example.org, J.P.MossDelete
Finally, someone said it. I've been looking and looking for the worst case scenarios (because I prefer to know), and finally, here it is. And written by you - which means it is beautifully crafted bad news. And the comment by Ann Romney - it has been annoying me no end because, as you said, it gives the best case scenario of a disease that rarely has a best case. Thank you.ReplyDelete
It can be difficult to find examples of worst-case scenarios, because by their very nature they force the afflicted patient into a state of isolation. As for Mrs. Romney, she obviously has a very mild form of the disease, at least thus far. Still, let's not underestimate the psychological toll it takes, even in its most benign form. Remember, too, that Mrs. Romney has also had to deal with breast cancer. I more blame the press, who seem inclined to focus on inspiration rather than desperation.Delete
So eloquently presented, Marc; I do like how Sue phrased it, "beautifully crafted bad news." Now if we could get more of the media in the U.S. to be brave enough to tell the story ... who knows what would happen?ReplyDelete
Yes, who knows what would happen. I fear we are going to be left guessing, for quite some time…Delete
Marc, you got me thinking about things.ReplyDelete
I've often wondered about group-funded research, not the bastardized pharmaceutical company type research but research done and supported by patients, advocates and just plain people that want to find a cure or helpful treatments without having to be beholden to stockholders. What if every penny donated to this type of research went to the research itself (and, of course, the salaries of the working scientists). What if we actually had a company thrilled to have a treatment become affordable to the public? Is it possible to create an altruistic entity of this type for this purpose?
You also have me thinking about a magazine/blog/anything that does exactly what you did here for all sorts of diseases, throwing the worst case scenario into the public eye. You are completely right that with all the rah-rah cases tossed out there, the realities get smothered and snuffed out and rather than people seeing patients that are suffering as just that, they tend to turn to these patients pointing fingers and saying things like, "well, she has MS and does just fine, you must not eat right, exercise enough, have a positive enough outlook and blah blah blah" and that's that. Rather than being someone that needs real help, those people are looked on as failures of some sort. It would be great to have a publication that points out the really bad side of diseases.
publicizing the terrible nature of "invisible" diseases is very important, but I'd imagine it would be hard to get the public to actually stop and look. Most people would simply rather not know, as the knowledge that life can be so quickly turned on its head is very disquieting.Delete
There are organizations that put almost all of their funding to genuine independent research, and I think it important to urge friends and family who want to donate to the cause to seek out such entities. The Annette Funicello Foundation is one, as is the Myelin Repair Foundation.
Tricia, you are describing the Annette Funicello Research Fund for Neurological Diseases. Every penny goes to research to find the cause and cure for MS. In fact we are about to announce our year-long "penny campaign" on Annette's birthday 10/22, with just that plan!Delete
I don't know that I would want to continue in her spot. Should my MS progress to that point, I hope they try every experimental treatment in the long shot hope of recovery. I would rather have the recovery fail quickly with my death than live the life suggested by this MS, especially as MS seems to hit men harder on average. Bravo to her and her husband.ReplyDelete
Suffice it to say that I'm with you on that one… it's all about quality rather than quantity as far as I'm concerned.Delete
I'm so glad you brought up this topic and I do so agree with you that society needs to see the worst aspects of MS as well as the hopeful examples. I don't think the spouse of a presidential candidate can speak freely, but perhaps we'll hear more from her later.ReplyDelete
Marc, you have numerous talents and probably not enough time and/or energy for all of them. Much as I love your photography and videos, it's your superior thinking process and ability to sort though things and make sense of them that means the most to me. If you don't always say what I think, you say what I wish I had thought of. As far as I'm concerned, you are the standard bearer for how and why someone with a chronic and creeping illness can remain vital to him/herself and society.
Now, before you become impossible for Karen to live with, I'll stop with the applause, but do know that many of us wake up every morning hoping for another WK post.
thanks so much for your extremely high praise. As my own disease keeps chomping away at me, putting these posts together is getting a little bit harder. So too is coming up with fresh subject matter, since I've been at this for quite some time now. I suppose the audiences is always changing, though, and I shouldn't shy away from revisiting old topics, perhaps with some new perspective.and believe me, my thinking process isn't always so superior. If you ever meet Karen, she can give you an ear full…Delete
Thanks for the provocotive post, again.
I watched the Anette Funicello video, I have to confess that I paused it and shut down the screen when my kids came in the room. My wife has not seen it, and I don't want her to. Not because I am afraid she would leave me, she would do all that Anette's husband did and more. It is the fear of the future we try to keep in check at our house.
I agree that we need a true representation for the face of MS. I feel I am holding my own currently, and believe I have had symptom relief due to multiple CCSVI procedures. I don't know how to find the balance of "seizing the day/living in the moment" and "preparing for the worst". Currently I am trying to sieze each day, and Anette's story helps to remind me to do that.
I need help on this tight rope.
it is indeed a tight rope, life on a knife's edge. It's not only our friends and family we need to worry about, but our own mental well-being. We can't live with our heads in the sand, even if the view up above is downright frightful. I try to use the "dark at the end of the tunnel" as inspiration to live each day as fully as possible. Let's face it, life is a terminal disease, and in 100 years there will be all new people. I find that perspective helps to take some of the edge off. Of course, coming to grips with one's mortality would be much easier if the prospect of an ugly end didn't figure so prominently. There are no easy answers.Delete
I recently wrote a blog entry about the influence of celebrities with MS. I did not consider the importance of revealing the "reality of those most severely afflicted with MS" before reading your blog. Here is a link to my blog: http://msvillagecanada.com/famous-faces-with-multiple-sclerosis-the-good-the-bad-and-the-ugly/
It is not as well written or as detailed as yours, partly because of the limits I have writting for MS Village Canada.
I also often write and talk about the need for independent research that is free of pharmaceutical corporations influence. The research that is being funded by MS Societies is useless because the doctors/researchers have conflicts of interest and/or lack of expertise in conditions being studied.
Thank you for opening my eyes to the ugly truth.
thanks for posting the link to your essay, I thought it excellent.if I may offer one small bit of criticism, though, the gray font over the orange background is kind of hard to read. Don't know if you have control over that, since you are writing for a larger concern.Delete
I agree with you that the MS societies are far too influenced by drug money, but the influence of the pharmaceutical companies has permeated almost every aspect of medicine at this point. Even the highly respected medical journals are not immune, and I now view most published research with a slightly jaundiced eye. Sad commentary, that.
Once again, Marc, you have written so well what I have been feeling. I silently scream, "That's right!" or "Exactly!" while reading your essay. Thank you for doing what you do, despite the ravages of this horror called MS (or whatever particular flavor of it you actually have!) I truly appreciate it.ReplyDelete
you are most welcome. I thought I heard somebody screaming, "that's right", but thought it was coming from the next apartment…Delete
The full horror of seeing the horrendous reality of MS has been hidden for far too long as was the Holocaust. When something horrific and disturbing suddenly is exposed for all to see, changes generally happen quickly. People must be aware of the extreme ugliness of how MS can destroy people's bodies and people's lives. Then and only then, will MS become a priority that is not FUBAR!ReplyDelete
I'm in full agreement. How, though, to get the public to open its eyes when the Media produced for its consumption won't address the problem head-on? Don't forget, accounts of the World War II Holocaust were discounted for years while it was happening, until finally at war's end the proof good no longer be ignored…Delete
Thank you for your insightful and heartfelt message about the real ravages of MS. The reason Annette Funicello started her Research Fund in 1993 is because she wanted nearly all dollars collected (only 5% or less goes to program expenses and ALL staff are volunteers)are directly used to fund research grants and clinical trials. Additionally, we are currently pursuing non-pharmaceutical pathways, such as CCSVI, that are very promising in helping to alleviate symptoms of MS for many afflicted people. We are working hard to find a real cure, not only for Annette herself, but for all of those who suffer from MS and so many other horrible neurological diseases. Glen, Annette's husband, made a very difficult decision to agree to doing the CTV story (which we feel was very sensitively and respectfully handled) because Annette's greatest wish was to help others and he felt bringing her forward at this time was the right thing to do. For anyone who wishes to donate to The Annette Funicello Research Fund for Neurological Diseases, please know that your money is being well spent directly on research, not to fund administrative costs to our organization. You can donate at www.annetteconnection.com. Thank you so much.
thank you so much for commenting on my blog piece. I only recently learned of your group, and I'm already an admire. Please keep up the good work…Delete
Marc I love your thoughts, musings and rants. I agree this face of MS is often not shown. I once hit edss 9 during a relapse. May I never go back there. Thank you for your honesty and integrity. HelenReplyDelete
you're welcome, and I hope you never, ever get back to EDSS 9.Delete
I am one of the 10% afflicted with ppms. 10 years now since dxed. i am bedridden, with no use of my legs and very limeted use of my arms. i have no control of my cecretions and have to be held up to a seated position. i dreadfuly watched the video of annette. even though frightening as it appeared, i realized the necessity to prepare myself and my family for what the reality of this awfull desease may bring. i am 15 years younger than annette but dxed at the same age as she was. this was a tremendous awakening for me and i am thankfull for the awareness and headsup opportunity to plan for such a possible future.ReplyDelete
I'm so sorry to hear of your condition, I hate the disease with every fiber of my being. It sounds like You are soldiering on as best as possible, and your concern for your family is admirable. Keep on fighting the good fight…Delete
Murphy, know that Glen, her husband, made the decision to allow this piece to be made in hopes of helping give people like you (and me) a brighter future. He and I both agree that people who are sliding fast should consider CCSVI as part of compassionate care. Her jugular veins were really messed up and he is grateful for the gains she got from opening them up. While Marc will be the first to tell you it does not hold the silver bullet. Some cases are straightforward like hers and Glen sure wishes they had done it sooner.Delete
Simply thanks; every word was true.ReplyDelete
you're very welcome.Delete
What I appreciate about this essay is the recognition of the truth, and its portrayal, but also that the 'half-truths' are the ones often being depicted in the public. 'Celebrities' who are newly diagnosed, or not very progressed in the disease, whilst well intentioned, are indeed supplying a sanitised view of ms. Of course, we were all possibly once in the same position, naive and well-intentioned, or simply bewildered and trusting of the medical profession. That of course, changes over time, depending on each ones circumstance and disease progression. Personally, in my early days, I too was one of those ms'ers, optmistically thinking I had escaped all the bad stuff. I know better now, but recognise that some in the early stages of ms are not necessarily ready to hear the truth. Thank you for this very honest and well put together article. EleniReplyDelete
a very perceptive comment, as one's view of the disease does change with time and the progression of their disability. I too remember when I was first diagnosed and couldn't imagine that I'd ever be one of those wheelchair people that I saw in the neurologist's waiting room. I guess it's our capacity for denial that helps keeps us sane.Delete
I am still awaiting final diagnosis. The saga has now gone on for over 5 years. My grandmother had MS. So finally it is thought that I may have it as well. Looking into MS further and picking up information here and there, it appears to me that ingrained ideas of what it is and what may cause it could also hamper finding out the 'real truth' about MS. I live in Melbourne Australia. During 2012 there have been a number of reports, findings, media presentations and findings. A team of researchers reporting finding a protein that is involved in the demyelation of nerve fibres and having a drug that could block this protein. Elsewhere a micrbiologist in England reported to have cured his wife with a regime of antibiotica, implicating a very nasty parasitic bactirium (Clamidia Pneumoniea) This bacterium is also implicated in heart disease and stenosis of veins and arteries....ReplyDelete
Of course CCSVI is the other condition that continues to get mentioned and a clinical trial is currently underway at the Alfred Hospital in Melbourne. To me it seems reasonable to at least get tested for this bacterium (although it seems hard to detect and the tests are not always reliable) and to also make sure that all my veins flow freely. Thanks Marc for your inspiring words. Annet
Together we stand
it is vital that scientists research alternative hypotheses regarding multiple sclerosis and all so-called autoimmune diseases. I've come to understand that the word "autoimmune" actually translates into "we don't know what the hell causes this". Obviously, an immune system gone haywire is a symptom of some hidden underlying cause. I tend to believe the truth is that what we call MS is probably a collection of similar diseases, each with its own etiology. It may turn out that, in this way, all of the theories are correct to one degree or another.Delete
I have found an interesting view, see below, of the MS etiology in the article published in Nature Reviews Neuroscience, impact factor 30+, so the information about serious discrepancies in the nowadays standard autoimune MS model gets more and more to the wider audience. Its good to read the whole article not just the abstract.Delete
Anyway, I enjoy reading your posts, even though not being from an english speaking country, because they make a lot of sense, you use logical conclusions and don't afraid to tell the whole truth. As being a physicist, I appreciate all of that very much.
Thanks for the link. I have read the full paper, and it makes a compelling argument for re-examining current assumptions about MS. Or, I should say, makes another compelling argument for re-examining current assumptions about MS, since many of the current assumptions do seem to be flawed, at best.Delete
Yes, but its on a good way towards a solution. Not the kind we would prefer most, which obviously would be the cure for MS, but a different one and that is the collapse of the current way MS is treated (expensive shots that have miniscule impact on the disease). As the new MS drugs are more and more expensive and there are more and more articles about the flaws of the autoimune theory the drugs are based on, the system has to break at some point. Because nobody, even the patients themselves, will be willing to buy them at all and rather let their MS take its toll on them naturally. That will be the end of the current system in my opinion, in a capitalistic way. Capitalism may be good even in the medicine. The problem why it is not currently, is that it can work well only under the prerequisite that all consumers are well and equally informed, which is not the case at the moment (or maybe it never was). However, it will probably take some time and the change won't happen even for the currently newely diagnosed but it might for their children. One way or another, even the current patients have to keep telling all the truth about MS and how it is currently treated, which is what you do, Mark, and for that you deserve mine gratitude as well.Delete
To me as a physician the most tragic aspect of MS is the irrational way in which the condition is understood and dealt with. How few people know the extent to which speculation has here overgrown what is seen, and how small the role concrete evidence plays in the ways in which MS is dealt with.ReplyDelete
We are all very appreciative of your tireless efforts to change this situation for the better. I know that your clinical experience focused on the most severely debilitated pwMS. For that as well, I will be eternally grateful.
Doctor Schelling, a real honor to have you comment on my site. Thank you for your groundbreaking work and tireless efforts to advance our understanding of MS. I'm in complete agreement that the current "autoimmune" model leaves much to be desired, and new approaches to understanding the disease are desperately needed.Delete
For those unfamiliar with Doctor Schelling's work, he was a pioneer in investigating the vascular aspects of MS, predating Doctor Zamboni's work by a number of decades. He is a true medical visionary whose work has for a long time gone very underappreciated.
My friend and brother in spirit, you are blessed with a gift to articulate that I am so grateful for. I pray that the cog fog part of this plague stays away from you and you can continue to voice what we all know all well to be true.ReplyDelete
I have taken my fight to the "spiritual realms" hoping to encourage other ms patients to not lose hope as many often do... Anne Veasey is the latest of us to harm herself. Here is an article describing what happened. She was a vocal advocate and if you do a google search on her you will see some of her replies earlier this year. http://www.telegraph.co.uk/news/9603985/MS-sufferer-killed-herself-after-visit-from-Dr-Death-euthanasia-website.html
Bill Sullivan, The Physically Challenged Ministry
Love to read your blog WK! I watched the Annette Funnicello video and was scared #$^!less. Who wants to see what the future may hold for us. It prompted me to keep moving. So I go to the YMCA for exercise six days a week now. I have SPMS and use a wheelchair but I can still get in and out of it with assistance. Since starting the exercise regime, my PT finds signs of improvement in strength. Any improvement for me is so welcomed. No meds for me. Tried them with no help. Had CCSVI with a little bit of help, nothing miraculous. I say #$%^ the pharmaceutical companies and any one who prays on the diseased. We all want to find a cure for a better life. Live better while we can and take care.ReplyDelete
If you are in doubt as to which wheelchair will work best for you then here is a comprehensive guide to help you out. You can also browse through our forums where you can ask about any queries you may have on wheelchairs and associated products.ReplyDelete
Hello, I am 23 and newly diagnosed, my MS is taking hold very quickly. I no longer feel 23. Thank you for writing this post, it was great.ReplyDelete
Thank you… This is my first time commenting here for a long time I've been stalking this blog. I was diagnosed six years ago and is pretty much been down hill from there, and though I'm a hopeful pessimist, I'm not holding my breath...ReplyDelete
Thank you for so eloquently puting into words what I feel
You, as usual, are masterful. I cannot watch the video.ReplyDelete
hey Marc--I know you're Facebook phobic, but wanted you to know your essay linked on the CCSVI in MS page has gotten hundreds of hits, likes and links. You have written the ugly truth must beautifully, and are to be commended for this. CCSVI Alliance appreciates your support, ideas and insight. None of us are giving up. Thanks.ReplyDelete
Deeply appreciative of this essay, once again. Your mastery brings light and hope where there is darkness and despair. It was an honor to have participated in the interview, but I have to admit I was anxious about how it would be received. Your response fills my heart.
I know you want people to see the ugliest part of this disease and the W5 Annette Funicello piece showed it so well. Her husband is amazing. We need more caregivers of those most afflicted to share their stories too. Most of us are not in it alone.
Great post, as usual. I had watched the Annette video last week, and then I knew why she had been out of the public eye for so long. Often on MS message boards, someone would mention Annette and wonder how she was doing. I applaud them both for letting us see how bad things are for them now. I understand why celebrities don't show the "dark side" or discuss it much (and I am not without blame. How many times have I tried to put on a "happy face" for one reason or another.) I often think of David Landers who kept his MS a secret for more than a decade because he was afraid he'd lose work (similar to Michael J Fox who tried his best to hide his Parkinson's.)
I did watch one video where Ann Romney was very specific about MS (evidently early on she was much more affected than she is now.) But it was a discussion with Wolf Blitzer and she didn't shy away from discussing the difficulties most MSers have. Here's a link if anybody's interested: http://www.youtube.com/watch?v=ZK8K33_f2F0&feature=relmfu
I envy diseases that seem to have a specific treatment protocol. Not that they aren't frightening and deadly in some cases, but I have many friends who have had cancer, and the doctors seem to know what to do and when to do it, and seem to have a protocol for each type of cancer. With MS, it is a cr@p shoot, and many of us try one med after another with little change. Symptomatic meds seem to be doled out in the same way...you mention a symptom and the neuro takes out his Rx pad and says "See if this works" (with the unspoken meaning of "If it doesn't we'll try another.")
It just seems like nothing with MS has ever really been "figured out." We still aren't sure if it's autoimmune, or if it is what triggers it, after all these years of research. But that is not what's portrayed to the public, and to listen to many we're living at a great time in history to have MS...well it doesn't feel too "great" to me!
Thanks again for telling the truth!
I won't watch the Annette video, not out of any fear but I have well comtemplated my own fate. A long but relatively mild course, has nonetheless added up for me. I know where this is headed and I have no expectation of a treatment that changes anything. So I tend to focus my limited energies on the dimishing menu of activities I can do, and the relationships I have. I have my dark moments, of course, its hard sometimes not to get really pissed off.ReplyDelete
Thanks so much for posting this Marc. We need the whole truth and not just the sanitized version.ReplyDelete
It's also hard to watch Ronnie Lane succumb to MS.ReplyDelete
The Traveling Show follows it in sad, gruesome detail.
Wow. As someone who was just diagnosed (8 days ago), this is just the begging of my reality, and it scares the tar out of me reading this stuff, but I thank you for putting it all out there. So many things I have read are fluffy, yet I know what my body is feeling, and I assure you, it's not fluffy. As a 34 yr old mom of four kids 7 and under, I would rather know all the possibilities of this awful, unpredictable disease and be prepared. Thank you.ReplyDelete
Firstly, as a 32 yr old Mum of 2 and reading this article I now am crying which I never do In front of them. I am typing each word and breaking about every 5 words as my arm is apparently lazy as I am someone who loves this random arm that I sure don't own..... Yet it looks normal so I'm clearly just lazy lol.ReplyDelete
I remain for now more reserved on the diversity and really frightening happenings that only I can feel. The noticeable MS in blunt expression is when I can't swallow, start choking then fit. I remain my hospitals most worrisome visitor to the point I was even given a Willow Award. Having British identity makes treatment free. NOOOOOOOO I will not go through all the failures via EVERY 'brilliant' treatment. I will stick to my Savinex as I was part of test trials, so although our stupid institution wants to steal this releaf from me, they can not because of the trials terms and conditions....... Hahahaha.
Light & Utter Love
Sarah AKA M ental S arah
I hated this. I have had MS for four years and I am 25. At this point for me it has all been sensory and although I'm sure we all sat the same way at the beginning it IS to be noted that the MAJORITY of people do not progress past EDSS 6. I know MANY people with MS who are still skiing in their 50's and 60'sReplyDelete
Yes I realize that is only the RRMS group but that is what most people have. I know it can be scary and I know it can be ravaging but it is to be remembered by newer diagnosed people that you are not painting a clear picture either. There are severe cases (closer to 20%) of people and there are mild cases and moderate cases making up 80% of people with MS. So please if your going to paint an accurate picture do not margainilze the people who are doing well as that is the majority of people.
i was diagnosed with ms in 2001 , i was refused my social security , by the end of 2007 i had lost everything ,my job , my home , all that i had , i will never receive any benefits or help , the government through me under the bus , my family and friends abandoned me , i have been blind crippled , paralyzed , had seizures that would make an outlaw biker cry ,those are just a few of the things ive had to endure, and it aint over yet...ReplyDelete
Kudos! Thank you very much.ReplyDelete
Thank you so much for writing and publishing this blog. You are a remarkable writer.ReplyDelete
I'm upset too by how MS seems to be portrayed as such a minor disease. Have had RRMS for fourteen years now, at the very least, and was finally properly diagnosed last year. Along the way, I had a fun bout of transverse myelitis that left me with noticeable disability. Not in a wheelchair yet, but suffer from severe exhaustion all the time and easy fatiguability. And too many weird other things to list. People look at me and think, "she's not in a wheelchair; therefore she is fine." They don't realize, there is so much more to MS than the wheelchair. Printed this out to share with the next person who tries to tell me MS is no big deal.