A Question of Culture

The statistics on the prevalence of multiple sclerosis are changing, particularly on questions of gender. The rate of MS among men is static, according to the NMSS. Among women, the pace of MS diagnoses is growing. More women are diagnosed with the disease than men, by a ratio of 3.5 to one. Nobody seems to have an explanation, though research has increased to find an answer.

I wonder if the answer is more cultural than neurological. It is generally accepted that women are climbing the ladder in corporate America. A glass ceiling remains, no doubt, but women are moving up in management. An increasing number of women are taking over as breadwinners in American families. Any good sociologist would start asking questions.

Who among us would disagree that stress can cause flare-ups with MS? Does MS present suddenly or gradually? My guess is nobody knows. Let’s say the disease comes on gradually. If stress among some women is increasing exponentially, who is to say that symptoms are not pushing some into MS-land. This is my story, and in the absence of evidence to the contrary, I am sticking with it.

Lung cancer has surpassed breast cancer as the number one cancer killer in America. Lung cancer rates in men are declining. The rate among women is on the rise. Houston, I think we have a problem. I may be dead wrong, but perhaps there is something to the theory. There is a price tag on success. Nobody is suggesting women drop out of the workforce. But maybe there is a way to ameliorate the stress of success. But Type A personalities do not slow down.

 

 

43 Responses to A Question of Culture

  1. Dale March 26, 2016 at 12:21 am #

    Yes there is a price tag to success. Most career women I know however, regardless of men helping more with domestic chores, still carry the bulk of the duties related to the children. I have occasionally been known to mumble “I wish I had a wife…”, the kind my mother in law wanted. It is stressful trying to be Supermom. But I got lucky working with a team that shares the philosophy family comes first, so all cover for each other. But this is an interesting premise, the rise in many diseases is frequently due to better diagnostic tools.

    • Richard M. Cohen March 26, 2016 at 8:57 am #

      Your roles sound stressful to me.

      R.

  2. Amy Corcoran-Hunt March 26, 2016 at 2:03 pm #

    Have no idea if it’s coincidence or not. PPMS showed up during profoundly stressful professional time.

    • Richard M. Cohen March 26, 2016 at 3:04 pm #

      Someday we might have an answer to that.

      R.

  3. Jan March 26, 2016 at 10:05 pm #

    Will weigh in on this one… I think we all know that stress exacerbates MS. Currently, I am barely walking on what feels like sprained ankles and much foot burning, somewhat dizzy — Three weeks with an elderly relative unhappily moving to this area; two weeks in caregiver mode (a.k.a. Nurse Ratched), Easter, cooking, work piling up, etc. I truly need to cool it.

    I personally do believe that stress can also be a trigger. I myself think so (empirically, and regardless of the stats).

    For me anyway, I had much stress beginning in high school, followed by two very stressful events, and then arguments with my parents over disclosure of one of them about 25 years later (and after I no longer erroneously blamed myself).

    But I will also say that MS triggered the true start of my taking back my life, of owning who I am and in being comfortable in my own skin. Far from perfect, but knowing that how and what I feel matters. An increase in faith. It’s all rather liberating.

    I worked FT pre-MS and pre-kids; PT the past 11 years. So, my feeling is that stress is stress, regardless of the source. FT working and climbing the ladder with a family? That qualifies. Other things, do, too. And yes, I’d be considered Type A. This all makes for a good time to redefine what is really necessary to accomplish.

  4. Dale March 27, 2016 at 1:53 am #

    Attitude really is everything. When I was growing up being ‘stressed out’ was not the badge of honor it seems to be today for some. Being in soft money basic research we honestly felt an obligation to those who funded us to work 24/7. We all really loved what we did and still do, but once you have others that truly depend on you, the old “‘nobody on their death bed ever said ‘I wish I’d spent more time at the office'” kicks in.
    That said, trying to keep up with things like before, like decorations for each season neatly organized, or actually weaning the snoozers from our bookcases to make room for new ones from the library book sale (my kids are worse bookaholics than we are) requires an activation energy seemingly just out of reach these days. So this year the Christmas tree still stands lit in the studio, and that’s OK as a) no one has found the glass pickle yet, and b) it’s actually kind of fun all things considered. A couple hearts for Valentines Day, shamrocks for St. Pats, flags for the 4th, Turkey’s for Thanksgiving, got them all all covered.
    Now to just try to learn to relax. And stop worrying about some new MS related loss. That’s really the hardest.

  5. Sue in TX March 28, 2016 at 8:15 am #

    Yes, as I have said before, I believe stress was my route to MS land too. So I am not surprised if woman’s increased presence in the workforce on top of responsibility for homemaking, has stressed the modern woman and increased stats on autoimmune diseases. I feel a woman can not have a good family work balance if society doesn’t make it possible. And I think a woman will be stressed if success as a homemaker and caregiver is left undefined and undervalued. Stress seems to be built into the societal roles women currently play. For this reason, I like Dale’s take on the importance of attitude adjustment, especially in regard to keeping house. The day before Easter my teenage daughter sulked because I had not put away the Christmas decorations which were stacked in a corner. I had been feeling stress to boil up eggs for the kids to dye colors in the kitchen, pick up groceries and do last min things, and this just added to the list. I did something I usually don’t do, I pulled the MS card and I asked How come no one else in family didn’t put it away? She stormed off and since I won’t play this card anytime soon, I continued the conversation with my hubby when he happened into the room. Poor guy. Why is it that no one can put clean towels in the closet? Or cook? Or clean the bathroom? I found myself saying “I am important to this family even if I don’t keep the house completely clean – I boil eggs for dyeing!” As I said it I felt ridiculous. Is this what MS has brought me to? From FT professional and super mom to someone whose self worth is based on boiling eggs!? No one countered me, no one laughed either. I felt pretty low. But Easter Day was much better – my daughter and i reconciled, towels and Christmas decor were magicly put away, my husband gave me flowers (unusual), and our family toasted our blessings over our home cooked brunch. It was peacefully happy.

    • Dale April 4, 2016 at 12:11 am #

      The toughest part is not reacting to the reactions of those around you. Like your daughter. I still have trouble with that, dang my mother would just be happy in spite of whatever grouchy was around her. Maybe this little reality check was just the ticket. They really can kick in and help and we shouldn’t feel guilty for asking!
      Btw every year when the kids were little I hollowed out the eggs, they dyed them and then I saved them. Most have survived, we have shoeboxes full so easy to bring out each year. Glad I put the work into it back then, they like the original ones but don’t push to dye new ones.

  6. Vikki March 28, 2016 at 8:44 pm #

    For me, the last sentence Richard wrote probably means the most. “Type A personalities do not slow down”. I am the definition of that type A personality. Financial Analyst at 23, climbing that corporate ladder. Even my MS diagnosis wasn’t going to slow me down, even while relapsing four to five times a year. What did change this was motherhood. I left the workforce, but all that energy now went to raising a family, which was so much more “work” than my actual job ever was. Stress is part of who I am, I actually thrived on it for so many years. Even now at almost 47, it’s very hard for me to stop and actually relax. I had my Lemtrada infusions four weeks ago. My immune system is basically at zero right now, the perfect excuse for me to sit and let my body heal. I just simply don’t know how to do this. I know many people with MS, almost all women, all of them have the same type of personality, no matter what they do. I think Richard is onto something.

    • r. cohen March 29, 2016 at 10:58 am #

      Regrewtable if true..

      R.

  7. Sandy Stolaronek March 30, 2016 at 12:26 pm #

    Richard, you’re definitely on to something! The year before I was diagnosed, I was working full-time and taking part-time classes at night, working towards a new career. Yes, I was very stressed, to say the least but the stress affected me differently then, not to mention, I seemed to have had a lot more stamina for dealing with it. Now, all I have to do, is raise my voice or have an argument with someone and I feel completely drained, when just prior to that, I may have been having a much better day. Also, the next day I may be paying for it with fatigue and all of my common symptoms being worse for the day. Nowadays, I have a lot more personal stress to deal with, which I think is much harder to deal with, because it is personal. It’s mostly family stress, of which, I see no escape from. I find myself daydreaming about getting away from it all, running away somewhere or going on a vacation where no one can reach me, hahaha! In just 9 months, my symptoms have accumulated even more, and old ones have worsened. I think this is all due to stress. It’s true that women bear the burden and the brunt of the household chores and responsibilities related to the home and the children. Part of that is also due to the fact, that us as women, do not want to let go and let others. It is sometimes very difficult to let someone else do for us, what we cannot do for ourselves. We think that if we cannot do it ourselves, we are failing others, as well as ourselves. And we also feel, as though no one else can do it as well as we can and we don’t want to have to go behind those who try to help us and redo it. Sometimes, it’s easier and less work to just go ahead and do it ourselves. But taking all of this into consideration, there must be more to this puzzling new information, that women with MS are on the rise. Possibly, it’s hormonal but whatever the reason, I’m sure that there are multiple factors, that need to be considered when it comes to the ratio of women, as opposed to men, being the more common gender to get multiple sclerosis.

  8. MB March 31, 2016 at 12:54 pm #

    The year leading up to my diagnosis I was nominated for an award and went through a grueling selection process. Soon after I received a promotion. And then I started to limp.

    Add wife and mother to the mix and there you have it—a time bomb of stress that internally exploded.

  9. Dale April 1, 2016 at 12:36 am #

    Wow this is fascinating. I wonder how much difference there might be between emotional stress and physical stress in progression of this disease. Four years ago I had surgery that laid me up for a month and I never recovered a lot of my previous abilities, balance, ability to easily lift my legs, etc. It seemed very abrupt. But then the emotional reality of never being able to ski again, sail by myself, climb the lighthouse or even get into the attic hit. Not pretty. But we all seem to have an image we still want to uphold and yeah, it’s tough to let go of certain things. Oh well, at least my husband who always believed cooking was woman’s work realized it allows you to actually play with your food.

    • Sue in tx April 11, 2016 at 10:59 pm #

      Dale, this is what I am experiencing now, I had surgery last yr and never got my abilities back. I was told recovery was longer because of ms but I never imagined it would be this way. I had hoped and need to go back to work for financial reasons last year but feel woefully physically unready. Someone kindly and sincerely offered that the incredible level of stress I have right now due to lack of finances will be alievated by a job, but then the person sheepishly but gently conceded I would replace that stress with trying to work full time as a professional with my ms symptoms. A Rock and a hard place. Whatever role stress plays in developing Ms, i find it difficult to avoid now, and healing certainly is not aided by it.

  10. Jan April 1, 2016 at 1:57 pm #

    Personally, emotional stress has hit me far harder all along.

  11. Jan April 1, 2016 at 4:54 pm #

    QUESTION: Does anyone have experience with CBD ingested sublingually? (under the tongue)… was getting oatmeal at my herb store (supplement/some food place), and a couple of people mentioned this to me with encouragement.

    An fyi — it’s the THC in cannabis that makes people high, not CBD. I’ve never smoked anything, so I’d not try medical marijuana. But CBD appears to be legal in all states and may be worth a try for inflammation and nerve pain. It comes in 100mg and 250 mg. I’m very meds-sensitive, so I’d likely try the 100mg.

    Any experiences to share?

    • Sandra Schneider April 4, 2016 at 7:14 pm #

      Hi, Jan

      Don’t know if it has helped me but I’ve been using CBD oil for a few years. If I take too much I get pretty mellow-not stoned. Look up Stanley Brothers or CBD Brothers for the real thing.

  12. Dale April 1, 2016 at 11:56 pm #

    I’ve heard that too, not sure how to get it. I always feel better at night after a little booze and occasionally a quarter (2 mg) of oxycodone when the pain in my legs starts to get to me. But I think the cannabinoids might really be an answer, I’ve so changed my thinking on that. No one has ever overdosed smoking marijuana. I wish I’d tried some when we were in Colorado. Love to know anyone that has.

  13. Jan April 2, 2016 at 9:27 am #

    Thanks, Dale.. and this CBD is through my local vitamin shop and by a “Honey B” company that promotes it both online and in stores. I’m still researching it, but t may be worth a try (money-back guarantee from either the shop or company). I just first want to more more about side effects. I understand that it is very different from regular pot — something I have not been willing to try.

    I myself was doing okay enough (in context) ane was going to swim again until three weeks ago, when at the start of Spring Break for our kids, my husband was almost killed on his tri bike when hit by a car (fractured back and plastic surgery to his ear in the ER, and policemen at my door to tell me and deliver his mangled bike), just a week after we brought his rather uncooperative dad here to live permanently nearby in a nursing home (and all that is involved with that).

    Needless to say, my about everything hurts, and walking is tough. Am thinking I may try this CBD. It is supposed to help with nerve pain (Lyrica commercials describe my feet, though I do not take that or anything). I mostly need ro get a grip on stress. There we go again with my prior comment re effects of emotional stress. I need very much to take care of myself right now.

    • Dale April 4, 2016 at 12:17 am #

      Oh good Lord Jan!!! God bless you. That would have surely put me close to the edge.

  14. grandma nancy April 2, 2016 at 1:10 pm #

    Reading these responses – I don’t fit. I don’t consider myself a Type A. I was not abnormally stressed. Now I’ll probably be considered politically incorrect…If research shows more women getting diagnosed this will mean less money for research since it’s not as important because men aren’t impacted as often. (My opinion…no hate mail please.)

  15. Christopher April 2, 2016 at 2:41 pm #

    It’s not stress… stress is all chemicals. If this were true then most politicians, doctors, lawyers, soldiers and Wall Street brokers (and almost all parents) would have MS. Both male and female. But they don’t.

    Stress is a big part though, since it can contribute to a breakdown of the blood brain barrier. We all developed MS for different reasons. But the root cause for all of us is related to how our genetics interplay with environmental factors differently than other people who don’t develop MS. But able-bodied people are not gifted or lucky…

    Genetically we’re all mistakes.

  16. Jan April 5, 2016 at 7:53 pm #

    Yes, Christopher, I have heard and understand that. (And smile and relate to your parenting comment).

    Genetics combined with environmental factors are plausible to me (and I have read that). But still, I can’t help but to wonder if 7 years of an eating disorder may have altered chemicals (though later doctors did say that life subsequently should be fine), with added stress being the tipping point. Really, I do not think that anyone truly knows (which would be rather helpful and a good step toward a cure).

    Dale, thanks for your comment, too. I seem to be making a whole lot of lemonade these days (as in, “When life gives you lemons,…).

  17. Dale April 8, 2016 at 12:51 am #

    Jan, you always seem to just grin and power on through. I actually only feel comfortable letting my guard down with this group. Christopher is a wealth of information without the unrealistic garbage we are fed sometimes because there really are no answers. There’s been a cure just around the corner for at least 20 years. I was so hoping for positive results for our fearless leader Richard. Still am. But for now just hoping something good comes out of the CBD info. I could really use some new form of relief, the tide is almost out on the scotch bottle.

  18. Jan April 8, 2016 at 7:01 pm #

    Hi Dale, will quickly reply. Yes, I tend to power on (or limp on or slump on…)

    Wanted to say that I temporarily nixed the CBD (likely need to titrate it, as how do I say this nicely,, there was some intestinal action with meds-sensitive me — slight runs, okay I’ll be blunt — and i cannot afford more stuff right now. I did swim twice this week at the indoor pool — it seemed to help.

    Now, my first order of business is getting back to status quo of sorts Yesterday, my husband’s spine neuro smiled after my comment regarding the decision between surgery (better early) or waiting in a brace for 3 months (when no surgery is the best option overall), and then I said, “I don’t suppose you have a crystal ball, do you?” I think it is rather like that with MS meds, too.

    So in a month or so, if I go back to trying the CBD I will mention it.

    gtg, Jan

  19. Andrew April 10, 2016 at 1:29 am #

    For sixteen years, I worked with a five county, regional crisis intervention center. Ten of those years, I was the director. We provided 24 hour emergency services for the area mental health and substance abuse service delivery network. In addition to full-time professional staff, I also supervised interns from six different behavioral health graduate programs from area universities. Among social work, clinical psychology, marriage and family therapy, and counseling education trained individuals, we had a range of training in various stress management skills. In addition to the inherent desire to work with people in sensitive life situations and be advocates for mental/behavioral health support, there was a great deal of team work collegiality. This is all to say that many long term friendships occurred among those of us who worked together. I have always been curious about the fact that nine of us later became diagnosed with MS (that is the ones I know of) out of close to a total of 80 persons who worked there during those 16 years. I understand the neurobiology of stress effects on inflammation of many conditions. More than many other ideas we carry around in our head, I wish I could end the self imposed guilt that some feel about “stress.” It is such a generic term for so many triggers that it often becomes useless acknowledgement. Many strategies have been useful for some from cognitive behavioral therapy, biofeedback, mindfulness meditation, 4-7-8 breathing, etc, etc. and of course, pharmaceuticals. There is a lot of support for finding an exercise regimen for those of us with MS. Among my personal favorites was discovering an “art therapy” that relaxes and focuses me on something other than my pain, physical losses, et al. I discovered stone carving and have become part of a network of local sculptors. One of my early mentors has muscular dystrophy. Also, as a retired person, I was shocked to have most of my work sell in galleries, shows, and even to win some substantial cash prize awards. And I don’t even have to play the “handicapped” card to attract attention from buyers/collectors. I must admit that I have dabbled in creative writing but have yet to find it as rewarding as telling a story in three dimensions. Plus, the story that an observer finds for them self is more important than the one in my head as I create. And as most of those who read this column, I imagine we all have “stress” jokes, studio cards, etc. we have heard or read that amused or annoyed us. I like: “stressed is just desserts spelled backwards.” I doubt I could ever find a pharmaceutical that could be as euphoria producing as the synergistic effect of cheesecake with a cup of dark roast coffee.

  20. Jan April 10, 2016 at 1:09 pm #

    Andrew, I found that interesting.

    Also, my creative head is smiling in thinking of how you came up with “desserts.” Loved that.

  21. Louisa April 10, 2016 at 2:49 pm #

    Andrew, Wait. So you are saying that more than ten percent of the people who worked with you were later diagnosed with MS?

    • Andrew April 11, 2016 at 12:44 am #

      Yes, Louisa, the statistical anomaly of my experience has baffled me and some of the others. I am the only male among the nine with MS and also the last of this group to be diagnosed. One of the women had rapid and severe decline and passed away before I ever had noticeable symptoms. Another among the women, who has had MS for 20 years, continues with reasonably good health, functioning in a hight profile large service delivery system as the CEO. Environmental exposures have crossed my mind but so many others worked in the same building years after I left. Our water system is good and very well analyzed thanks to a major university department. Maybe we all swam in a nearby river that exposed us to something (but also thousands of college students and local folks over many years have also enjoyed recreation there?). I have never heard any of us suggest we have lived with inordinate stress levels–but three of us know we have Scottish ancestry???

  22. Jan April 10, 2016 at 9:04 pm #

    Andrew — I should say that I sincerely meant that “interesting” word (and not in a glib way, after an earlier comment) — Your reply was insightful to read.

    And Richard, I have a possible topic for you relating to handling hope: “Dealing with loss.” As in, “I just cried when the MS limitations hit me hard just now.” Maybe redefining “hope” when former definitions change.

    Although upsetting, I didn’t cry over my husband’s bike/car accident — just handled things with concern and care. I typically don’t cry over all of the many struggles and pain. (I just “power on,” as Dale commented). I’m dealing okay enough with grandpa (and his sometimes 5-6 phone calls daily, annoying as they can be. Hello…hello…hello??? He’s old, has issues, and can’t properly hold the phone). We had him over most of the day, with the sister in town. Not the best overall timing — I likely just need good quiet time and rest.

    But what tipped me over the edge emotionally just now is knowing that my husband (in a back brace) is on a brief neighborhood walk with his sister–okay’ed by the dr., btw. The sunset is pretty. (It has been a very long month; I may be more sensitive). We brought her here for a few days to visit their dad and her brother after the bike ordeal and moving grandps here. I’m not upset with her or either of them, really – but felt imprisoned in my inability to walk around the block, that then also brought thoughts of all the other physical things I cannot do.

    Losses. Walks; missing a former H.S. XC race ending; not being able to participate in normal things; my skating; my husband verbalizing how MS has affected everyone in my family. And it has, from what I can’t do, to a prior job elimination, to my inability to work FT to help… we can all likely relate to our own definitions.

    Years ago, some TV space movie showed astronaut Richard Crenna slowly separating from the main capsule with a failing oxygen supply, losing life-giving breath. Slowly. Slowly suffocating. How’s that for a visual? Their walk brought that to mind — a bit dramatic, perhaps, and not my typical thought life. But sometimes it will sneak in. So, maybe chasing hope with changed boundaries. Chasing hope when you have a bad moment, perhaps.

    • Sue in tx April 11, 2016 at 11:26 pm #

      Oh Jan I understand much of what you say. I could not join my family on a simple outing to the mall. We all felt the loss. Such a simple thing I couldn’t partake in but such dramatic grief at my insidious progression. And recently I was forced to explain in front of a large group of parents why I was the only person who parked in the fire lane At the front of the school. But there was overflow parking I was told. I guess I
      Need to apply for the handicapped parking card ,which I stubbornly haven’t done yet. The distance from the car to entrance is beginning to seem farther away. And I had to admit that I will not be able to return to my chosen career. I knew before now, I think, I just was not ready to let it go, something so intertwined with my identity, something I had worked so hard for. But I see it now floating too far away, like your astronaut metaphor, cut off.

  23. Louisa April 11, 2016 at 12:29 pm #

    Andrew,
    Your story makes me think virus, but what do I know? . I had an infusion last month with a man who told me that four of the seven people with whom he shared a beach house developed MS. Only he and his sister were related. Two of the other people in the house ) had episodes of bells palsey. As is said, I just met the guy, but
    that’s what he said!

  24. Dale April 11, 2016 at 11:40 pm #

    When I was in Antarctica my first year there was this virus called ‘ The Crud’ that went around McMurdo base. Many got it but I seemed to get it worse than most. I must have developed some immunity to it as returned four more years and though other new folks did, I never got it again. But it seemed symptoms started appearing the summer after I returned. Didn’t recognize it for what it was early on, think that’s the case for most. Just as well as that diagnosis would have caused me to fail the physical. But I did convince myself that is what started it. Symptoms came and went, but wasn’t officially diagnosed until 10 years later. Ignorance was bliss on my part.

  25. Sue in TX April 12, 2016 at 11:33 am #

    I have been uneasy with recent revelation that Zika virus can cause ms like demyelination in rare cases. Here in TX, My girls will shriek like they saw a tranchula when a mosquito is in the house, demanding I kill it. It’s funny and then it isn’t really. How does one protect against mosquitoS completely. I laugh lovingly at the girls but share my unsettled feeling about the situation. They know I have tried to protect them by staggering their childhood vaccines with dr oversight so as to not overwhelm their immune systems. None of my pediatricians however were aware that one of these vaccines was the determined cause in vaccine court to triggering progressive aggressive ms in one woman. How could this information not be disseminated to physicans? My mother had aggressive ms and I suffer from ms, surely this should have been part of determination of whether my children should get this vaccine. Regardless, immune system disregulation seems involved for me, in addition to stress. My earliest symptoms followed a diagnosis of mono (which I understand is a common observation ) and overexposure to toxins in barnacle rocks when I nearly drowned. My second set of symptoms occurred after a TDAP booster I was required to have for grad school. (It made me wonder if Andrew and his office were required to have certain vaccines to serve the public. ) And my stop everything ms attack followed the death of a beloved family member and my oldest daughter’s life threating illness, while I was working full time, my husband’s job was changing, we were renovating our home ourselves, and yay I became pregnant (the blessing). Looks like I may have been Richard’s poster child for stress induced.

  26. Jan April 12, 2016 at 6:15 pm #

    Sue, while we aim to not give advice, I will do just that: get the blue car placard.

    If I am at a place with limited spots and elderly people, I try not to use it. But in the spirit of a former nurse neighbor (and no, not Nurse Ratched, either, ha) years ago who said, “If having the placard allows you to do the things you want to do, to handle more errands than without it, then get one. (At the time, it was a red one. For all here, and mine now, it is blue). Use it, and don’t let yourself feel guilty.”

    For me, it’s a part of accepting that I am who I am, and that MS does not define me as a person. I just deal with it as best as I can. I don’t look negatively upon others with issues (but also admit that I still more freely say the word “issues” than “handicap” or “disability” — I suppose my way of dealing with this), so why would I ruminate and imagine others to think less of me because of this? So okay, they can because of my being human, but not from MS.

    Many things are relative. So while my husband went on a brief walk in his back brace, he wasn’t doing what he normally could do and without pain. I can’t do what I’d normally do, either. But guess what? This morning I still did some skating jumps in the pool. (Safer there, anyway).

    And I suspect we will both better appreciate the perspectives of each other.

  27. Dale April 13, 2016 at 11:40 pm #

    Sue I fought getting the placard, it felt like an admission of –gasp– the realization I probably wasn’t going to get any better. Then I got it. What a huge difference it made. Able bodied people can DO things sometimes we can’t. Sometimes they’ll resent all those prime spaces being carved out for gimps like us. It’s OK, don’t feel guilty or ashamed or whatever. Get one, even if just for safety reasons.

  28. Sue in TX April 20, 2016 at 5:27 pm #

    Yes Dale and Jan, you both make very good points. I took time to respond, hoping to be able to relay how I’ve addressed the disability parking issue. But instead, I found myself parking in the firelane at school again, just for a moment and had to review my situation in my mind. This brought me to your thoughts on it, and I was thankful to have Richards blog as
    A reflective glass. It’s true, getting the tag admits I don’t think my weak legs are temporary, and while I’m having no problem grieving the loss of who I used to be, I haven’t done enough to move forward with acceptance of my current self. I think staying in gratitude for blessings I do have, such as my daughters, has helped me but I also must not block acceptance of what is. You’re right. And I’ll apply for the tag. And when it’s dangling from
    My rear view mirror, I plan to smile and think of dales comment, that this allow me to do things i want to do.

  29. Dale April 21, 2016 at 12:44 am #

    Just because you get it doesn’t mean you have to use it, but sure beats parking in the fire lane! Life is short and tough enough for us. There’s no brass band for avoiding using those spaces any more than for delivering a baby without pain meds these days. Took a while for me to accept that but once I discovered I would get THE best seats at the college hockey games and actually get close to the entrance to boot I figured why not.

    And I’m glad Jan can still do her skating jumps in the pool. Some things you just can’t completely let go of.

  30. Ann April 21, 2016 at 6:59 am #

    This week I took my next step to enjoying my husbands retirement. I’ve been trying to let him relax and not place extra demands because he is home. I realized I have not been using my leg brace for over a year because I can no longer put it or my socks on alone. With help, I am now wearing it again and it is such a help for me as well as my husband.
    As for the placard for the car, I ditto all the comments re:get it. It helped me stay mobile for many years and has helped my husband since I have become not so mobile.
    Andrew, I found your comment about Scottish ancestry interesting. Our family came from Glasgow, Scotland.
    Good posts from everyone.

  31. DianeT April 21, 2016 at 10:00 am #

    i have also been aware of the Scottish ancestery link – Scotland is one of the countries with the highest prevalence of MS in the world. My mother’s side of the family all come from Glasgow and Edinburgh. I also grew up in Canada which also has higher than normal statistics ( perhaps a genetic component is part of the mix and makes some of us more susceptible). Again, lots of theories but not many answers for all of us who deal with all the various symptoms and issues – and of course most people will not have a Scottish/English ancestor.
    P.S. I appreciated the discussion of parking placards – I can (slowly) get to my water exercise class in the morning but getting back to my car in the parking lot afterwards is extermely difficult with legs that operate like noodles. I don’t want that to be the reason I can’t continue ( don’t need any easy reasons to proctrastinate ).

  32. Jan April 21, 2016 at 8:51 pm #

    Diane, swimming is totally that way for me at the rec. I think I had mentioned before that I even called the bldg architect to enlighten him that close spots should prevail over pretty landscaping, the latter making the walk more difficult in, and worse out.

    btw, MS does not prevail over fire lanes. Just don’t look old by driving with a placard up!

    And Dale, yes it is hard to let go of my skating… but to all, we do not let go of who we are as people–MS can take much away, but not that.

  33. Jan April 21, 2016 at 9:12 pm #

    Whoops, my bad as our kids may say… not to offend the elderly, I should have said, “Don’t look out of it by driving with the placard hanging.” I do not think it is allowed.

    But I will make no comments about fuzzy dice hanging from that rear-view mirror, haha.

  34. DianeT April 21, 2016 at 9:56 pm #

    Thanks Jan, Dale, Ann & Sue. It was very helpful for me to hear your thoughts on the parking placard. I know my pride is getting in the way of getting this kind of proactive help. I guess I have felt that I am giving in or giving up psychologically with such a visible sign of my weakness. However, I now realize that I could just use it when I really need to, like after my water exercise class. The class is worthwhile because it helps strengthen my muscles. Many of the exercises like standing on one leg would be impossible for me to do without being in the water. The hardest part of the class for me has been getting back to my car afterwards. I am exhausted and my legs are really weak. Later on, after a rest, I seem to have more energy and stamina, so it is worth trying to keep going. I dread the walk back to the car though, so I’ve started to procrastinate on going at all, which I know is foolish. I am the youngest in the class and feel sad that I feel so old. However, I have to remind myself that everyone (and definitely those in this class) have some health issue or another, whether it’s arthritis, bad knees, heart conditions etc. I do admire other people’s discpline and resilience, and try to remember Michael J. Fox’s words of wisdom: “Focus on what you still CAN do, not on the things that you can’t.”