A Couple Good Reasons (and One Bad One) to Drag Your Crippled Ass to the Gym

December 6th, 2011  |  Published in Real stories, Stumpblog  |  29 Comments

Please join me in welcoming a new Stumptuous contributor: Saint Pikachu, whose fierce and irreverent wit combined with her vulgar zest for life appeals to me like a shiny thing attracts a crow.

SP writes with painful juicy honesty about her “journey of imperfection” and resilience, and was the third-place winner of the Stumptuous Fitness Model contest. Like all of us, she’s had her ups and downs, and also like all of us, does a lot of… ahem… experiential learning in nutrition, health, fitness, and life in general.

Which is why she’s awesome. So, please: enjoy.

–Mistress K

A Couple Good Reasons (and One Bad One) to Drag Your Crippled Ass to the Gym

…Or to the park or the track or wherever you like to get physical – I’m a weight-room girl myself, but it doesn’t matter where you like to get active, just that you’re doing something fun and challenging, something you want to do.

Ah, but that’s the trick, isn’t it? Getting able-bodied people to want to is hard enough, but making physical activity appealing to us crippled folks can be an even bigger pain in the ass. We have concerns that are not adequately addressed by exhortations to exercise solely for the sake of health (a word that be pretty loaded), and we have a hard time finding images of folks like us in ads for gyms and workout gear.

It can start to feel like physical activity is just not something crippled folks should be pursuing, and I think that sucks.

I’m talking to you, crippled reader: I want to get your ass in the gym. So, I’m going to say a few things about WOWC (working out while crippled) that you may not have thought of, and hopefully they will encourage you and I will manage to be helpful and not just obnoxious.

For the record: I’m a 32 year old woman with multiple sclerosis. My experiences are, of course, bound by the particular quirks of my own crippled body and may not always be representative of yours – we are each of us God’s unique, crippled little snowflakes, and what works for me may not always work for you.

And for the record: I use words like “crippled” a lot – this bothers some people. If you’re one of those people, I’m sorry.

Also: CRIPPLED! CRIPPLED! CRIPPLED! CRIPPLED! CRIPPLED!

Ok, you ready? Good. Now, first of all:

You’re not that delicate, princess.

“Oh no,” a friend said of my blackened shin and raw-hamburger knee. “What the hell happened?”

“It’s nothing! I just fell!” I said, and her eyes got wet and wide.

“Oh honey,” she said, collapsing onto my chest for a hug. “I’m so sorry.”

“I think I’ll survive,” I said, baffled, and spit out a lock of her hair. An aside to whatever god made me: Why are all my female friends shorter than me? And why does their hair love to send tentacles into my mouth like horny octopi? Jeeze.

People can be very reluctant to encourage physical activity for the sick and crippled folks they love. It’s perfectly understandable – you’re already kinda broken, they don’t want you to break further – but it can be a hindrance for the crippled beginner who is already nervous about taking on new physical challenges.

It’s also perfectly understandable for you to be afraid to hurt yourself, and when your fear meets the fears others have for you, it tends to grow. If your loved ones see your health as so fragile, so easily shattered, it’s hard not to feel the same way, and that can stop you before you start.

Good thing that’s horseshit.

You are not a vase or Gutenberg Bible or a gimpy little veal – you do not need to be stowed away in a box for protection.

On the contrary, you probably endure, on a daily basis, a level of pain and difficulties that most folks don’t (and that many don’t even notice). Activities that able-bodied folks can perform without thinking (getting the mail, taking a shower) require the care and meticulous planning of a casino robbery. You bust your ass just to get through the day.

You’re tough, in other words, and you can take it. Be smart and be honest with yourself about what you can do, be thoughtful and careful, but don’t live in fear of damaging your tender self. Yep, getting active means you might hurt yourself, but I’m not being flip when I say that can be a gift.

Getting hurt and recovering reminds you of how resilient your body is, and how tough you are. These are good things to remember.

Another good thing:

Cripples and athletes are BFFs.

(and that title is not meant to imply any sort of division between cripple and athlete – there are scads of crippled athletes out there kicking ass every day – but to reassure the crippled beginner who is not yet comfortable identifying as an athlete)

I wouldn’t have thought so when I was getting started, but serious athletes (amateur and professional alike) tend to be far more understanding and supportive than the general public. I’ve had people honk and yell at me from their cars for taking too long to shuffle across the street (with cane at my side, no less), but when I was dragging my crippled ass through Warrior Dash a few weeks ago, not one person complained about me holding them up or being too slow to get past an obstacle.

A woman at a café once stage-whispered to a friend that watching me add cream to my coffee with trembling hands was “disgusting and sad” (why she was watching me doctor my coffee at all is a mystery – I usually don’t stare at people in public unless I think I’ve seen them in a porno, and even then, I have the good taste to be discreet).

But in the gym, men who could snap me in half like a Kit-Kat will approach me to offer their shy admiration of my overhead press. The camaraderie I’ve developed with able-bodied gym rats is as welcome as it is surprising.

Athletes know what it is to push one’s body hard, to fight through pain and weariness. They respect you for doing it – even if it looks weird, even if it’s slow or sloppy. That being said…

It’s not going to cure you.

Most anyone with a chronic illness has, at one point or another, benefitted from the stunning reservoir of cutting-edge medical knowledge that friends, family, colleagues, acquaintances, strangers, grocery store check-out clerks, fellow bus riders, beauty school dropouts, and recently paroled arsonists moving in to the apartment downstairs all seem to have at their fingertips.

“Just don’t eat dairy, and you’ll be fine,” says a woman you once had to dissuade from using a butter knife to dig a wad of gum out of an electrical outlet.

“You need to start drinking raw milk,” says a man you’ve met that day, whose name you’re still not sure of (was it Jerry or Gary? Terry? Oh jeeze, this is why I don’t go to parties) and whose cologne makes your eyes water.

“There’s a doctor in Bolivia who’s curing people with bee stings,” says the guy who delivers your paper, “but you have to believe, or it won’t work.” He then excuses himself to go to his second job: selling baggies of oregano to gullible kids down at the middle school.

The sheer volume of unsolicited advice sick people get (and the arrogant tone in which it’s often delivered, as if your illness developed from laziness or stupidity) can be overwhelming. That’s bad enough, but I’m speaking from personal experience when I say that such advice can also break your heart. Being sick can make you desperate, and desperate people are willing to believe and try some pretty crazy shit. When that crazy shit doesn’t work, it’s devastating.

That’s why it’s important for me to be clear about this: getting active is not going to cure you. It may help your illness or disability – it may help a lot – but it also may not, and you, my beloved crippled snowflake, need to understand that and accept it.

The gym is not going to cure you. So why even bother?

Because your body is just like everybody else’s.

It can be hard to remember because your illness or disability sometimes feels like your body’s defining characteristic, but remember that your body is, in the ways that matter, the same a everybody else’s. It wants to move, to act with purpose and focus and silliness and joy.

Your body does not care that it can’t do the same things other bodies can, or that it moves differently, or that other people might think it looks weird – it just wants to do what it can do, whatever that may be. What’s different about you is not nearly so important as what’s the same.

Your body, just like everybody else’s body, wants to be used. Use it.

Responses

  1. Doreen Dixon says:

    December 6th, 2011at 9:30 am(#)

    Wonderful article! Saint Pikachu, I love your style!

  2. Katja says:

    December 6th, 2011at 11:29 am(#)

    Rock on, crippled sister!

  3. Be says:

    December 6th, 2011at 11:57 am(#)

    Funny and inspiring

  4. JKC says:

    December 6th, 2011at 12:44 pm(#)

    Fuck yeah, sister! I credit my deadlift in particular with keeping me as functional as I am. They will have to pry the bar from my cold, dead, crippled hands. GIMP POWER! \m/

  5. Pam says:

    December 6th, 2011at 1:14 pm(#)

    This is awesome and funny. Please keep writing here! There are at least, like, 5 things I wanted to past here and say “awesome”

  6. Laura says:

    December 6th, 2011at 2:40 pm(#)

    Terrific article. Just terrific. Thanks for writing and thanks, Miss K, for posting it. I look forward to more posts from you!

  7. Jennifer says:

    December 6th, 2011at 2:47 pm(#)

    What a fantastic article. Just what I needed after having a couple of extra gimpy days and feeling about as far from my former athletic self as I ever have.

  8. **ONE DAY AT A TIME** Dec5-Dec11 - The Cathe Nation says:

    December 6th, 2011at 2:55 pm(#)

    [...] managed yoga and a walk today, but am inspired to hit the weights tomorrow after reading this! A Couple Good Reasons (and One Bad One) to Drag Your Crippled Ass to the Gym :: stumptuous.com Cheers! [...]

  9. Stephanie says:

    December 6th, 2011at 3:08 pm(#)

    I wanna move back to Texas and be your gym buddy and do adventure races with you and just plunge myself into the deep blue sea of your awesomeness. Can’t wait for the next blog post!! Oooh what will it be?! STAY TUNED TO FIND OUT.

  10. Jasmine says:

    December 6th, 2011at 3:20 pm(#)

    Good on you for not letting MS get you down. Seems like its my week for finding great articles and videos related to my field (I work with an MS Neurologist).

    For those needing a nutritional take on this whole disease management through better living schtick, check out this lady: http://www.youtube.com/watch?feature=player_embedded&v=KLjgBLwH3Wc

  11. Liz Vazquez says:

    December 6th, 2011at 4:32 pm(#)

    I wish my crippled mom had heard the good news — I get so freaking excited when I see crippled people kicking ass. My feet are pretty fucked up, and working out will never make them work right, but there’s nothing like PRing a lift, IMO.

  12. Saintpikachu says:

    December 6th, 2011at 6:11 pm(#)

    Y’all are awesome – thanks so much.

  13. SophieB says:

    December 6th, 2011at 9:06 pm(#)

    Oh. Hell. Yes.

    (ps: I truly admire your gift for prose.)

  14. varsha says:

    December 7th, 2011at 5:32 am(#)

    Saintpikachu you are one awesome lady .Wise and wonderful words not just for cripples but for all of us too delicate to sweat or lift :))
    “The body wants to move, to act with purpose and focus and silliness and joy.”

  15. ABC, Ph.D. says:

    December 7th, 2011at 7:56 am(#)

    Thanks for the wonderful blog. My friend with CP was helped but obviously not cured by weight training as well.

    On the bee stings: actually, there’s increasing evidence that some autoimmune diseases can be helped with worm therapy, and they are doing trials. I have a different autoimmune disease, but I would try this if I had MS. Everyone has their own risk tolerance.

    Mult Scler. 2011 Jun;17(6):743-54. Epub 2011 Mar 3.
    Probiotic helminth administration in relapsing-remitting multiple sclerosis: a phase 1 study.
    Fleming JO, Isaak A, Lee JE, Luzzio CC, Carrithers MD, Cook TD, Field AS, Boland J, Fabry Z.
    Source

    Department of Neurology, University of Wisconsin School of Medicine and Public Health, Madison, WI 53792, USA. fleming@neurology.wisc.edu
    Abstract
    BACKGROUND:

    Probiotic treatment strategy based on the hygiene hypothesis, such as administration of ova from the non-pathogenic helminth, Trichuris suis, (TSO) has proven safe and effective in autoimmune inflammatory bowel disease.
    OBJECTIVE:

    To study the safety and effects of TSO in a second autoimmune disease, multiple sclerosis (MS), we conducted the phase 1 Helminth-induced Immunomodulatory Therapy (HINT 1) study.
    METHODS:

    Five subjects with newly diagnosed, treatment-naive relapsing-remitting multiple sclerosis (RRMS) were given 2500 TSO orally every 2 weeks for 3 months in a baseline versus treatment control exploratory trial.
    RESULTS:

    The mean number of new gadolinium-enhancing magnetic resonance imaging (MRI) lesions (n-Gd+) fell from 6.6 at baseline to 2.0 at the end of TSO administration, and 2 months after TSO was discontinued, the mean number of n-Gd+ rose to 5.8. No significant adverse effects were observed. In preliminary immunological investigations, increases in the serum level of the cytokines IL-4 and IL-10 were noted in four of the five subjects.
    CONCLUSION:

    TSO was well tolerated in the first human study of this novel probiotic in RRMS, and favorable trends were observed in exploratory MRI and immunological assessments. Further investigations will be required to fully explore the safety, effects, and mechanism of action of this immunomodulatory treatment.

  16. ABC, Ph.D. says:

    December 7th, 2011at 8:00 am(#)

    Also, a commentary. Pasting in:

    Journal of Neuroimmunology
    Volume 233, Issues 1-2, April 2011, Pages 3-5
    doi:10.1016/j.jneuroim.2011.01.003 | How to Cite or Link Using DOI
    Permissions & Reprints

    Editorial
    Helminths and multiple sclerosis: Will old friends give us new treatments for MS?

    John O. FlemingCorresponding Author Contact Information, a, E-mail The Corresponding Author
    a Department of Neurology, The University of Wisconsin School of Medicine and Public Health, 7124 MFCB, 1685 Highland Avenue, Madison, WI 53705, USA

    Received 5 January 2011; Accepted 10 January 2011. Available online 4 February 2011.
    Article Outline

    References

    Humans instinctively have a strong aversion to spiders, snakes, and parasitic worms. Even young children immediately recoil from images of these animals, describing them as “scary” or “yucky.” These reactions presumably evolved to protect us from harmful pathogens, and neuroscience reveals that the fear and disgust they evoke are hardwired in the amygdala and insula ( [Calder et al., 2001] and [Feinstein et al., 2011] ). And for good reason: pathogenic helminths (roundworms and flatworms) remain a major scourge in the developing world.

    Paradoxically, a quite opposite view of helminths has emerged from the work of several epidemiologists have who have made the counterintuitive suggestion that these worms may also provide some unexpected benefits to humans. For example, immunological theorists have suggested that the recent increase in allergic and autoimmune diseases in the developed world may be an unintended consequence of otherwise advantageous improvements in sanitation ( [Gaisford and Cooke, 2009] , [Okada et al., 2010] , [Osada and Kanazawa, 2010] and [Yazdanbakhsh et al., 2002] ). According to the hygiene or microbial deprivation hypothesis (Bjorksten, 2009), millennia of evolutionary exposure to micro- and macroparasites (prominently including helminths, and usually with low morbidity and mortality in the majority of individuals) has been universal, and a sufficiently infectious environment is required for proper development of the immune system. Support for the hygiene hypothesis comes from surveys such as that of Bach (2002), who noted the inverse relation between infection and autoimmune-allergic diseases in the developed world during the last half of the Twentieth Century. In the case of multiple sclerosis (MS), the incidence of this disease has been associated with regions of high sanitation (Leibowitz et al., 1966) and low parasitism (Fleming and Cook, 2006). Experimentally, studies in germ-free animals indicate that their immune and gastrointestinal systems are histologically and functionally abnormal ( [Eberl, 2010] and [Eberl and Boneca, 2010] ). Conversely, helminth administration in animal models such as experimental autoimmune encephalomyelitis has ameliorated disease ( [Gruden-Movsesijan et al., 2008] , [La Flamme et al., 2003] , [Sewell et al., 2003] , [Walsh et al., 2009] and [Zheng et al., 2008] ). Noting the co-evolution of hominoids and ancient infectious agents over millions of years, Rook (2010) has described helminths as members of our “old friends” whose absence may result in new diseases. Taken together, these findings support the central contention of hygiene hypothesis, namely, that a lack of evolutionarily normal infectious exposure may be one factor which contributes to abnormal immune regulation and even immunopathology in susceptible individuals.

    In this issue, Correale and Farez describe a prospective observational study with relevance to the hygiene hypothesis and MS. Previously, they had shown that when relapsing-remitting MS (RRMS) patients in their clinic developed asymptomatic gastrointestinal helminth infections, these subjects experienced reduced MS clinical and radiological activity in comparison to uninfected, demographically matched RRMS patients in the same clinic (Correale and Farez, 2007). Mechanistic studies demonstrated that the improved control of MS in the helminth-infected patients was associated with cellular immune responses characterized by decreases in IL-12 and IFN-γ expression, increases in IL-10 and TGF-β expression, and induction of T and B regulatory cells ( [Correale and Farez, 2007] , [Correale and Farez, 2009] and [Correale et al., 2008] ).

    The current study extended the authors’ observations of the patients in the original report and involved comparisons between three cohorts of patients: 1) healthy controls (HC), 2) uninfected MS subjects (MS-U), and 3) MS subjects infected with different gastrointestinal helminths (MS-I). Each group consisted of 12 demographically matched individuals. The total period of prospective observation was approximately 7.5 years. At 5.25 years into the study, four of the MS-I patients became symptomatic and required treatment with anti-helminth drugs (MS-I-Rx subgroup). Observations during the first 5 years of the study confirmed the findings of their prior report, namely, that the MS-I cohort experienced a reduction of MS activity in comparison to the MS-U cohort. Furthermore, the magnitude of changes was dramatic; for example, the relative reduction in the rate of clinical exacerbations or the appearance of new enhancing brain MRI lesions was greater than 95% in the MS-I cohort in comparison to the MS-U cohort. Remarkably, however, following anti-helminth drug administration in the four symptomatic MS-I-Rx patients, MS clinical and radiological activity increased to the level seen in the MS-U cohort. Essentially, then, in their MS patients, it was as if gastrointestinal helminth infection acted as a virtual immunological “light switch”: when present, helminth infections significantly turned off MS activity; however, when helminths were removed by drug treatment, MS activity was turned on. Mechanistic studies such enzyme-linked immunosorbent spot (ELISPOT) assays of peripheral blood mononuclear cell (PBMC) responses after stimulation with myelin basic protein (MBP83–102 peptide) or phytohemagglutinin (PHA) indicated that the cohort of MS-U subjects had increased numbers of IL-12 and IFN-γ secreting cells and decreased numbers of IL-10 and TGF-β secreting cells in comparison to HC subjects. This proinflammatory pattern, evidently characteristic of RRMS subjects, was reversed during helminth infection in the MS-I cohort. However, once MS-I subjects were treated with anti-helminth medication (i.e., the MS-I-Rx subgroup), their cytokine secretion reverted to a proinflammatory pattern. Similar results were found when the number of T regulatory cells (Tregs, CD4+CD25+FoxP3+) in PBMC were measured; specifically, relative to HS subjects, Tregs were diminished in the MS-U cohort, restored to normal levels in the MS-I cohort, and decreased to low levels in MS-I-Rx subjects. As the authors point out, this is the first prospective human interventional study to demonstrate a relation between helminth parasitic infection and autoimmunity, as assessed by both clinical and laboratory responses.

    The authors should be congratulated for this careful and informative investigation, which may have important implications for our understanding of MS and autoimmunity. Likely, an experiment of nature involving parasitism in MS patients of this duration and with this level of clinical, radiological, and immunological monitoring will never be repeated; in this sense, the study is and will probably always represent a unique scientific contribution. Nevertheless, the research does have significant limitations, as forthrightly acknowledged by the authors: observations were unblinded, the number of subjects was small, and infections were produced by natural, minimally characterized helminths in the field. In this regard, there is always a potential hazard during exposure to live organisms, and in fact 4 of 12 MS study subjects with gastrointestinal parasitism eventually became symptomatic and required anti-parasitic therapy. The impressive, almost dichotomous findings in matched MS subjects with and without helminth infections are provocative but need to be assessed in further studies.

    What are the implications the study of Correale and Farez with regard to MS pathogenesis and the hygiene hypothesis? Two extremes – either uncritical rejection or uncritical acceptance – appear unwarranted on current evidence. Despite the limitations of this small, observational study, it would be a mistake to dismiss it out of hand, simply because of an emotional antipathy to helminth parasites (“a non-starter”), a reluctance to consider a possible paradigm shift in our understanding of autoimmunity, or an unwillingness to challenge a prejudicial view of all parasitic helminth infections as exclusively pathogenic. (Max Planck, humorously referring to the resistance to quantum mechanics and relativity by the physics establishment in the early Twentieth Century, said that science advances one funeral at a time.)

    On the other hand, the hygiene hypothesis remains just that, only an unproven postulate, and at present there is evidence both for and against it (Bjorksten, 2009). Although there have been two major clinical trials demonstrating safety and efficacy of Trichuris suis ova in Crohn’s disease and in ulcerative colitis ( [Summers et al., 2005a] and [Summers et al., 2005b] ), it should be noted that two other clinical trials of helminth probiotics in allergic rhinitis and asthma did not met the study primary outcome measures ( [Bager et al., 2010] and [Feary et al., 2010] ). Also, several case reports have shown that supposedly benign helminths may produce serious adverse effects in some individuals ( [Kradin et al., 2006] , [Summers et al., 2006] and [Van Kruiningen and West, 2007] ). Given the possibility of significant morbidity (McKay, 2009), uncontrolled administration of helminth probiotics should be strongly discouraged, and the need for caution and careful monitoring when working with infectious organisms must never be forgotten. Furthermore, in the absence of proper clinical trials, little valid scientific information will be obtained concerning the benefits and risks of helminths as putative probiotics. What is needed is not hype or unsubstantiated claims of miracle cures from the realm of alternative medicine; rather, what is required is rigorous, objective evaluation of the hygiene hypothesis at the levels of animal models, clinical trials, and immunology. Regulatory and granting agencies should demand ethical, high-quality research with scrupulous attention to animal and human welfare, but inappropriate barriers to this work should not be erected simply because the agent is novel or the amygdala tells us that wormy is yucky.

    Maizels et al. (2004) have called helminths master regulators of the immune system, and in a most optimistic scenario it may be hoped that helminths or molecules derived from them might lead to an immunomodulatory pharmacopeia (Johnston et al., 2009), that is, a new class of “immunobiotics” (Clancy, 2003). In this regard, the fitful history of antibiotic development may be instructive, as it started in an period of pervasive skepticism about the possibility of bacterial chemotherapy (Bentley, 2009); followed by years in which lead substances could not be purified or proven efficacious; and, after more than a decade of research, finally culminated in useful drugs. A critical insight leading to the antibiotic era was the realization that bacteria and fungi produce bioactive substances for their own evolutionary purposes which nonetheless can be co-opted for clinical application (Ligon, 2004). In the case of helminths, to date more than 40 immunologically active substances or molecules have been isolated and partially characterized ( [Harnett and Harnett, 2010] , [Johnston et al., 2009] and [McKay, 2009] ). In the future, additional immunomodulators may be identified by combining transcriptomics, proteomics, and bioinformatics to predict the secretome, or set of products secreted by a helminth which are likely to affect the host ( [Hewitson et al., 2008] , [Robinson et al., 2009] and [Yoshino et al., 2010] ). An attractive feature of helminths or molecules derived from them as possible therapeutics is that their mechanisms of action (Table 1) are truly immunomodulatory, rather than immunosuppressive or immunoablative; potentially, this may represent an advantage in terms of long-term tolerability and safety in comparison to treatment modalities such as monoclonal antibodies which target key components of the immune system, such as T cells, B cells, cytokines, or lymphocyte adhesion molecules, for removal or inactivation. By contrast, during millennia of co-evolution, helminths have developed means to subtly but effectively alter immune networks without inducing serious or fatal immunosuppression, so as to promote their own fitness for prolonged survival within a host which remains viable and even, in most instances, relatively healthy.
    Table 1. Mechanisms of immunomodulation by helminths ( [Broadhurst et al., 2010] and [Buning et al., 2008] ; [Correale and Farez, 2007] , [Correale and Farez, 2009] , [Correale et al., 2008] and [Gomez-Escobar et al., 2000] ; [Harnett and Harnett, 2010] and [Johnston et al., 2009] ; [Kuijk and van Die, 2010] and [Maizels et al., 2009] ; [McKay, 2009] and [Osada and Kanazawa, 2010] ).
    Changes in Th1/Th2 polarization
    Promotion of regulatory T and B cells
    Suppression or modification of Th1, Th2, or Th17 type immune responses
    Blocking of T cell activation
    Decreases in IL-2 receptor expression
    Diminished B cell proliferation
    Inhibition of antibody class switching
    Increases in numbers or activity of alternatively activated macrophages
    Modulation of dendritic cell function through C-lectin receptors (CLRs) and other mechanisms
    Inhibition of leukocyte adherence
    Changes in vascular reactivity mediated by mast cells
    Prevention of superoxide production or nitric oxide synthase (iNOS) expression
    Increases in regulatory cytokines
    Decreases in proinflammatory cytokines
    Secretion of cytokine mimics
    Production of chemokine-binding proteins
    Modulation of toll-like receptor (TLR) expression
    Depression of receptor activator of nuclear factor kappa-B ligand (RANKL)
    Alteration of master regulatory molecules for transcription or cell signaling such as FoxP3, STAT 6, Smad 7, and NFkappaB

    The study of Correale and Farez has demonstrated a dramatic beneficial effect of helminth infections on the course of their MS subjects clinically, radiologically, and immunologically. Additionally, in a recently completed phase 1 baseline versus treatment controlled clinical trial of pharmaceutical grade Trichuris suis ova in RRMS, immunological and MRI outcome measures were promising, and no significant safety concerns were identified (HINT study, Fleming et al., 2011). A larger follow up study to the HINT trial is underway, and a trial of Necator americanus in RRMS is being conducted by researchers at the University of Nottingham. While no definitive conclusions may be drawn from early, exploratory studies, these investigations do provide a crucial opportunity for novel observations which may have important implications. Clearly, more research in this area is required to evaluate the hygiene hypothesis as it applies to multiple sclerosis. In particular, future studies should address specific issues such as whether live organisms or purified molecules are optimal for testing; the precise mechanism of helminth-induced immunomodulation; and how helminth infections interact with key factors currently felt to be central to MS pathogenesis, such as induction of Treg cells, regulation of T cell subsets, alteration of miRNAs, change in gene networks affected by disease-modifying therapies, activation of autoaggressive T cells and microglia, maturation of dendritic cells, entry of cells and immunologically active molecules into the central nervous system, and other priority areas for MS investigation. Only time and continued investigation will tell whether helminths or molecules derived from them have any clinical utility or theoretical relevance for autoimmunity. Niels Bohr observed that prediction is very difficult, especially about the future, and this aphorism is amply supported by the history of MS research.
    References

    Bach, 2002 J.F. Bach, The effect of infections on susceptibility to autoimmune and allergic diseases. N Engl J Med, 347 (2002), pp. 911–920.

    Bager et al., 2010 P. Bager, J. Arnved, S. Ronborg, J. Wohlfahrt, L.K. Poulsen, T. Westergaard, H.W. Petersen, B. Kristensen, S. Thamsborg, A. Roepstorff, C. Kapel and M. Melbye, Trichuris suis ova therapy for allergic rhinitis: a randomized, double-blind, placebo-controlled clinical trial. J Allergy Clin Immunol, 125 123–130 (2010), pp. e121–e123.

    Bentley, 2009 R. Bentley, Different roads to discovery; Prontosil (hence sulfa drugs) and penicillin (hence beta-lactams). J Ind Microbiol Biotechnol, 36 (2009), pp. 775–786.

    Bjorksten, 2009 B. Bjorksten, The hygiene hypothesis: do we still believe in it?, . Nestle Nutr Workshop Ser Pediatr Program, 64 (2009), pp. 11–18 discussion 18-22, 251-257.

    Broadhurst et al., 2010 M.J. Broadhurst, J.M. Leung, V. Kashyap, J.M. McCune, U. Mahadevan, J.H. McKerrow and P. Loke, IL-22+ CD4+ T cells are associated with therapeutic Trichuris trichiura infection in an ulcerative colitis patient. Sci Transl Med, 2 (2010), p. 60ra88.

    Buning et al., 2008 J. Buning, N. Homann, D. von Smolinski, F. Borcherding, F. Noack, M. Stolte, M. Kohl, H. Lehnert and D. Ludwig, Helminths as governors of inflammatory bowel disease. Gut, 57 (2008), pp. 1182–1183.

    Calder et al., 2001 A.J. Calder, A.D. Lawrence and A.W. Young, Neuropsychology of fear and loathing. Nat Rev Neurosci, 2 (2001), pp. 352–363.

    Clancy, 2003 R. Clancy, Immunobiotics and the probiotic evolution. FEMS Immunol Med Microbiol, 38 (2003), pp. 9–12.

    Correale and Farez, 2007 J. Correale and M. Farez, Association between parasite infection and immune responses in multiple sclerosis. Ann Neurol, 61 (2007), pp. 97–108.

    Correale and Farez, 2009 J. Correale and M. Farez, Helminth antigens modulate immune responses in cells from multiple sclerosis patients through TLR2-dependent mechanisms. J Immunol, 183 (2009), pp. 5999–6012.

    Correale et al., 2008 J. Correale, M. Farez and G. Razzitte, Helminth infections associated with multiple sclerosis induce regulatory B cells. Ann Neurol, 64 (2008), pp. 187–199.

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  17. Saintpikachu says:

    December 7th, 2011at 2:18 pm(#)

    See what I mean?

  18. Bill S. says:

    December 8th, 2011at 10:13 am(#)

    Great post! I’m a caretaker for someone with MS and I worry about encouraging more excercise because I know that physical activity can be really difficult. But, you’re right – the body wants to be active and lift heavy things. Do you have any suggestions on how to broach this topic?

  19. Saintpikachu says:

    December 8th, 2011at 3:39 pm(#)

    Hi Bill! Such a great question, and I’m sure one that many caretakers have.

    Everyone responds to different sorts of motivation, of course, but what I find most encouraging from other folks is enthusiasm and confidence in my abilities. Hearing something like “I’d love to go to the gym with you and watch you kick some ass” or “I was just reading about __________ activity, and I think you’d be great at it!” is hugely encouraging and helps build my own confidence. Punitive/scolding phrasing – “You really need to be more active” “I wish you’d try to work out more” – can really bum a girl out, and make movement seem like a punishment or a chore.

    If you’re broaching the subject with someone who’s been out of the game for a long time, try bringing up the idea of movement first, as opposed to a specific activity – “I’ve heard that exercise can really help some folks feel better – what would you think about us getting more active?” Really listen to the response you get and have an open, honest conversation about it.

    Also, be flexible and creative about what y’all consider “exercise” (a point I think I’ll be hitting even more in my next post). A crippled body may not be able to perform according to rigid definitions of exercise – “Give me 3 sets of 10 reps of stiff leg deadlifts at 40% max with alternating grip or give me death!” – and if that’s the only way you’re defining exercise and then your body can’t fulfill that, you can easily get discouraged. For the crippled beginner, I say: think of something that you know you can do and do it, regardless of whather it looks like “exercise” or not. Toss a pillowcase stuffed with blue jeans until your arms get too tired – the pillowcase will be heavy but soft, so it won’t hurt you if you drop it on yourself. Grapple with a willing partner – you can give immediate feedback on moves that are hurting or helping, and adjust accordingly.

    Above all: when you’re bringing it up, be patient and be kind – being sick is scary as hell, and when people are scared, they sometimes lash out, even at those who just want to help. Don’t be discouraged – as long as you keep everything open, honest and kind, you two will be able to have a useful discussion.

    I hope all this is useful! Please keep me posted about your experiences, if you like – caretaking is damn hard, and you need suppor, too.

  20. deb says:

    December 8th, 2011at 7:50 pm(#)

    Welcome! I am a (hopefully) recovering cripple -torn shoulder then a replaced hip- so I kind of understand a little what it’s like. Two years have been a LONG time…

    One of my best friends has MS and often uses the disease as a reason. Often it’s legitimate but sometimes we just have to call her for using it as an excuse. Blogs like yours help a lot.

  21. Neil says:

    December 9th, 2011at 7:38 am(#)

    Sums up my experience of working out hard while living with Parkinson’s. You haven’t come yet to the condescending attitude of some in the medical field. “What would you know about exercise? All you are is a patient who happens to have the disease, exercises, and records the results.”
    Looking forward to your next post.

  22. Katja says:

    December 15th, 2011at 1:00 pm(#)

    Bill, a couple of thoughts from my experience (secondary progressive MS, diagnosed 1994, fulltime wheelchair user). Saintpikachu has already mentioned listening to the body and not being a slave to someone else’s belief in what a routine should include. Cooling is important – at my gym I have water, and don’t hesitate to commandeer the big fan from the treadmill people when I’m getting overheated. Some references suggest “pre-cooling” (drinking a large quantity of cool/cold water prior to exercise), but I find that really uncomfortable bladder-wise, so I don’t do it.

    Recognize that even people with asymptomatic MS have a slower (sometimes much slower) adaption curve than non-MSers – when I started lifting it took me days (not exaggerating) to recover from each session. It took me months to recognize that I was making the kind of progress unconditioned able-bodied people will see in weeks.

    For me, one of the turning points was finding references that acknowledged that pseudo-exacerbations after exercise are NOT permanent, do NOT make the course of the disease worse, and are merely temporary side-effects of exercise. The National Center on Physical Activity and Disability (ncpad.org) has some good articles on MS and exercise that your client may find reassuring and encouraging.

  23. Naomi/Dragonmamma says:

    December 15th, 2011at 7:31 pm(#)

    Love the attitude! I’d like to send this story to a woman in my neighborhood who wallows in her cripple-hood. She had polio as a child and has been milking it for the past 30 years. Although she seems able to walk just fine when I spotted her shopping in another part of town, she roams the neighborhood in her electric scooter (one of those Walmart type things) and makes sure to let everyone know how disabled she is so they can feel honored to wait on her hand and foot.

    LOL at post #16. Yep, I see what you mean!

    Have a great life.

  24. Rachel Kadel-Garcia says:

    December 22nd, 2011at 8:53 am(#)

    @Naomi: There are many people with a genuine need for mobility aids which varies, such that they use different ones at different times. Using an electric scooter sometimes and walking unaided at others is pretty common for people who fatigue easily.

    Which is not to say your neighbor doesn’t have a bad attitude, or always makes the best decisions managing her disability. Could be she’s wallowing as much as you think. But seeing someone coping without their aids and concluding they don’t really need them at all is unhelpful and usually incorrect.

  25. Lavina says:

    December 22nd, 2011at 12:51 pm(#)

    LOL, but seriously, I have ms, diagnosed in 2006, the first day i started swimming, i swam 4 laps!
    i now do triathlons and partipate in the msbike every fall.
    it was my friends, not doctors, who told me to ‘do more’.
    rock on!!!!!!!!!!!!!!!!!!!!!!!!!

  26. Ingrid says:

    January 8th, 2012at 6:00 pm(#)

    Great post… I sat here nodding my head as I read your wise words. I had a total hip replacement nearly two years ago now, and spent the 12 months leading up to it in serious pain and utter misery. I went from being an international athlete to being unable to walk down the street.

    Six months after the surgery (when I felt capable) I began working with a personal trainer, who took my recovery into account with every program she wrote for me. By this stage I was walking short distances every day, swimming once a week, and I could carry the shopping from the car to the kitchen without help. I could only just lift my 9 kilogram cat up from the floor for a cuddle!

    I did exercises prescribed by my physio every day (still do), and worked carefully and regularly with my trainer to get my strength back. A year later, I am amazed at what steady, gentle (compared to what I was doing before), consistent weight work has done for my broken body! I am strong again, I can lift the cat easily, I can walk reasonable distances without pain or fatigue, I can dance, cycle, swim, lift, throw, and move. I am about to fulfill a lifelong dream and go skiing at Snowmass Colorado (coming from Australia it’s a bit of a hike!)

    I can only agree with SaintPickachu and say “Move”! It doesn’t matter what you do, as long as you enjoy it. Just move!

  27. Haddayr says:

    January 23rd, 2012at 11:58 pm(#)

    Late to the party (had to scroll past the incredibly! helpful! ‘research!’).

    I probably have MS, too — it’s taking me a while to get diagnosed. And I drag my crippled ass to the gym, and I have experienced exactly what you describe with athletes. No one has stage-whispered that I am “disgusting and sad,” but one mom once grabbed her bewildered daughter tightly to her bosom and ran full-tilt out of the Home Depot to get her away from me. And I had a guy who saw me bicycling past him with my crutches attached to my bike tell me that it was awfully ‘fishy’ that I was able to bike but still needed crutches. Fishy.

    But after the first few admiring glances at the gym and maybe one or two supportive remarks when I first started, no one pays me any mind.

    Anyway you are a delightful writer and I think I love you. But not in a creepy way.

  28. WonderfullyWorthy says:

    May 15th, 2012at 4:48 pm(#)

    Your post inspired me and brought me to tears, the first I seek out often and the second rarely happens. I was paralyzed in a car accident years ago and after a long road of pt walked with a slight limp back into a power lifting gym. Although I encountered adversity and struggles along the way some of the most uplifting friendships I have ever developed where with exceptionally strong people who would help me as I learned to work humbly inside my new body. As the years have passed I find my self being an ambassador to people in the same situation and love helping them feel comfortable as they walk a gym for the first time. Simply because your body isn’t perfect does not mean your soul isn’t crave action! Thank you for this post.

  29. Moonlight says:

    July 8th, 2012at 9:28 am(#)

    HaHa! I’ve been a cripple for 21 years and wish I had read this years ago. I was told I shouldn’t lift anything heavy because it would make things worse. Sometimes the advice is coming form the medical profession.

    I think people should be a little more forgiving of people who don’t find the wherewithal to exercise. When every step feels like you’re lifting a house, the thought of adding more weight to the effort is daunting. Before I bought a walker I used to fall over frequently. Let me tell you this is not pretty. It can shatter your nerve.

    And yes the ‘helpful’ advice is a pain and so is other people assuming you are faking it or exaggerating.

    Nevertheless, I just love your advice and I’m truly inspired. I’m looking forward to a more muscular, toned body.


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