Staying Up

And I do not mean staying awake. When we know we are slipping, as life’s little tasks grow difficult, inevitably we have to admit in a whisper that something bad is happening. I am so invested in my positive attitude, so caught up in the stem cell trial; I cannot bear to admit to myself that I am slipping. But I am weak, walking like nobody I know. Admitting a setback possibly but historically unlikely to be temporary, is a statement of failure and just is unacceptable. Please, no.
Why would I think I can declare victory before the race is run? This is a marathon, not a sprint. Oddly, I think I know what is happening but seem powerless to steer clear of the choppy waters. My two battles with colon cancer have left me with imperfect plumbing. Cancer and MS do not coexist well. Cancer and aging do not dance gracefully. Greater detail is too much information. And what is the predictable result of my anatomical shortcomings?
Stress. Big time. All of us understand the dangers of stress. I know that stress elevates my body temperature and problems kick in. I also know that my losses likely are permanent. That does not promise a rosy future. I always have outrun the opposition, outsmarted my enemy. This time feels different. I am worried but not ready to concede.
Where do we get the strength to stay up and keep going? We are emotional alchemists, spinning straw into gold. We just do it. I do it. We tell each other and convince ourselves that the show must go on. I know my kids understand that is how I feel. And they absolutely realize there can be no victims in this house. But when the lights are out and all are safe in their beds, wherever they are, who knows what fills a heart?

38 Responses to Staying Up

  1. Dale April 13, 2015 at 11:43 pm #

    Hugs….

    • Dale April 14, 2015 at 12:12 am #

      Hugs to you that is Richard. Keep the positive attitude. Who knows with this beast? So what if we’re in some sort of denial. I’m going to put flames on that damn wheelchair having only recently come to uneasy terms with it. That it is even needed is excruciating to accept for an Old Antarctic Explorer.
      But whatever you need to do to keep going you’ll show us how to do it with style. Of this I am certain.

      • Richard M. Cohen April 14, 2015 at 9:00 am #

        Thanks.

        R.

  2. Jan April 14, 2015 at 12:17 am #

    The show indeed did go on for me in the early years of MS in that I could just push through the physical and even the all-consuming emotional MS learning curve.

    My neurological dance began at the time of a large skating reunion ten years ago in a very hot city. Just got word tonight that there will be no accommodations for health to cut three days into one at a similar, though benchmark, summer reunion. MS dimmed those lights, to be sure.

    But I’m surprisingly okay with that. Maybe because the house lights always come back on. Perspective makes them shine with greater depth and connections. (Take you all here, for example). The show’s over; real life resumes. And I do see my close former work/lifelong friends occasionally. We stay in touch.

    I’m juggling two books this month. Interestingly, a friend who went to college with Wallace Nichols told me about his book, “Blue Mind.” Has all sorts of perspective about stress, water, neurological things (even myelin), multitasking, neuroscience, brains, connecting, including a Thoreau quote: “Many men go fishing all of their lives without knowing that it is not fish they are after.” Liked that.

    And because I find humor to be great medicine, “I Want to Kill the Dog.” Saw only two mentions of MS but had plenty of audible chuckles!

    • Richard M. Cohen April 14, 2015 at 9:18 am #

      Norman Cousins, a legondary magazine editor, wrote that “laughter is inner-jogging.”
      He ussed laughter to combat the condition that ended his life.

      R.

  3. Henriette April 14, 2015 at 8:44 am #

    You are an inspiration!

    • Richard M. Cohen April 14, 2015 at 9:18 am #

      Peace,

      R.

  4. Joan Z April 14, 2015 at 8:48 am #

    It IS stressful isn’t it…I find myself ignoring a lot. I could work myself into a full blown pity party, and sometimes I do. Usually though I just have to put it out of my mind that a life full of running shoes, travel, cars that were great fun to drive is now a life with wheelchair and walker, with the once hated cane relegated to clutter pretending to be an accent piece next to the font door. Nights are the worst for ushering in doom and gloom, seems like once the sun comes up it’s easier to ignore the decline and remember to be happy. I wish I had a firm grasp or answer. As you so eloquently put it, we just do it. Know that you provide all of us with a soft place to land and that is so very much appreciated.

    • Richard M. Cohen April 14, 2015 at 9:20 am #

      And peace to you.

      R.

  5. Vedrana April 14, 2015 at 10:03 am #

    Hi, I just wanted to draw your attention to the AAN plenary conference on April 24th. MedDay pharma company is to present results from their Phase III clinical trial. They are already issuing press releases making people expect great results. In their Phase II study 90% of progressive patients actually saw improvement of their symptoms. The results were particularly encouraging for damage to optic nerves and mobility issues. If you google “Phase II Progressive MS Biotin” you can read the encouraging results they had from Phase II study.

    • Jan April 14, 2015 at 10:17 am #

      Biotin: had not heard of that one. Interesting.

      • Vedrana April 14, 2015 at 10:29 am #

        Here is the link to the Phase II study.
        http://www.msard-journal.com/article/S2211-0348(15)00006-1/fulltext

        Results of one Phase III trial is coming out on the 24th. They have a second Phase III trial that will post results at the end of the year.

        The good news is that you can buy biotin yourself if you so choose. They treated patients with 100-300 mgr. Improvements were seen between 2-8 months of treatment. All patients were treated but the evaluator was blinded in evaluating increase or reduction in EDDS.

        Very promising. Plus MedDay is making quite a bit of a fuss over the release of this study it is hard to think they have bad results to report, though I guess anything is possible.

        Vedrana

  6. yvonne April 14, 2015 at 10:47 am #

    Thanks for the info Vedrana. We all need that light at the end of the SPMS tunnel, even if is just a flicker.

    • Vedrana April 14, 2015 at 11:27 am #

      Depending on the EDDS score there are some international centers that will treat progressive patients with HSCT. Of course the goal with HSCT is to stop progression of the disease and in 60-70% of progressive patients it does just that. With HSCT and MS the earlier in the course of the disease, better the results.

      I think realistic hope is VERY important in dealing with a chronic progressive disease.

      Good luck to all
      Vedrana

      • Christopher April 15, 2015 at 4:34 am #

        Actually, HSCT doesn’t work in progressive forms of multiple sclerosis–the damage has been too extensive. Stem cell transfer seems to work for a few people as an immune system re-boot. But those people have little to no permanent damage with active inflammation, which means that there isn’t any real scarring from plaques yet. Science hasn’t figured out yet how to make stem cells fix actual damaged neurological tissues yet. So unfortunately, if someone has disability from destroyed axonal nerves… it’s permanent and stem cells can’t regenerate something that is no more. If the nerve is still functioning but just hindered then there is a slim chance of repair. Once it’s gone though, that’s it. That part of stem cell science is still a bit of science fiction. We can’t regenerate whole new nerves–at least not yet. I would caution anyone buying into lofty promises. Especially in foreign places. The biological science is known fairly uniformly across the world, and unfortunately at this point in time the science is just not there yet. There are also no secrets that researchers somewhere are just not revealing. Researchers all learn the same sciences.

      • Vedrana April 15, 2015 at 12:39 pm #

        Actually Christopher that is not entirely true.

        I do know that Dr. Burt from Northwestern University in Chicago is of that mindset (RRMS only) but even he has treated newly transitioned SPMS patients. But there are other experts in the field who happen to disagree with him. Some of them are Dr. Slavin (Dr. Burt’s mentor and one of the original MSC researchers) in Israel, Dr. Fedorenko in Moscow and Dr. Ruiz in Mexico.

        Please know that I am not interested in giving ANYBODY false hope or lofty promises. The only thing you can hope for with HSCT is that in 60-70% of progressive patients it will halt the underlying disease, so no more new damage. That is the intent of the treatment.

        And you are VERY VERY CORRECT that anybody pursuing these kind of treatments abroad needs to do extensive research. Hopefully find previous patients that have undergone treatment in these facilities. I encourage everybody to do exactly that. This is a very personal decision that greatly depends on a person’s risk taking profile and their ability to afford treatment that is not covered by insurance (so devastating).

        Good luck
        Vedrana

  7. Jeff April 14, 2015 at 11:05 am #

    Sorry for you Richard…

    I know stress is really bad for my MS, although it is difficult to control. I started meditation about three months ago and it has helped. I found an app that works well for me (https://www.headspace.com/). I think it is important to remember that we can have some impact on what this disease does to us. Keep doing whatever it is that helps you – exercise, diet, stress reduction, etc. and remember that just because you feel worse today doesn’t mean you can’t feel better soon. When the doom and gloom comes, it is tough to stay positive (and I am far from Pollyanna), but we must keep our mind from going to the dark side…

  8. Joan L April 14, 2015 at 11:42 am #

    Sometimes you just get to let it out. I feel the anguish in your post. We all hit these spots, moments of dread for the future. You have been through much more than I can imagine. We come here sharing our hope, hoping sharing helps. It does. Hope it helps you, too.

  9. Dale April 14, 2015 at 11:56 am #

    The first author is CEO and shareholder of Med Day but the other authors appear to have no conflict of interest. The study had no funding so must have been through Med Day. but the results and discussion make sense. Nice find Vedrana.

    Funny as I just started taking biotin for my beaten up nails.

    • Vedrana April 14, 2015 at 12:40 pm #

      It will be interesting to see what they release on the 24th.
      That one (to my understanding) will be a double blind placebo trial. There is actually another Phase III trial of the same design (again to my understanding) that will be released by the end of the year.

  10. Linda April 14, 2015 at 12:13 pm #

    Richard,
    I too, must join in to say, “I care”. Your honest, forthright, blog gives me a “leg up” every day. Your humor makes me smile out loud. Your written frustrations validate mine.
    Thank you for giving me a safe place to share.
    We all need you. Group hug….

  11. Dale April 14, 2015 at 2:14 pm #

    Reflecting on your Norman Cousins quote Richard.
    I was a HUGE fan of Art Buchwald. He Emceed the Vineyard’s Impossible Dreams auction each year which raised funds for the hospital and social services Your buddy Walter Chronkite offered up sailing trips, Carly Simon a personal performance, etc.a bunch of others each year. But Art was always star of the show and really got folks to open their wallets.
    As his health declined he went into hospice, and wrote his own obituary while there. Then he got better, left hospice and that obituary became more meat for his humor. I really think he had so much fun writing that obit it helped him.
    Humor is indeed good medicine.

  12. Wendy April 14, 2015 at 3:47 pm #

    Vedrana Thank you!!

  13. Louise April 15, 2015 at 9:29 am #

    I’ve been feeling the same way, Richard – things slipping, denial, excuses. Spring is beautiful but also reminds me -renewal for many things and people but not for me.
    I have that “when MS closes a door, it locks a window”feeling I get from time to time.
    Did this really happen to me??
    And, of course, when you post of a new loss, the stem cell door closes a little for all of us.

  14. David April 15, 2015 at 2:03 pm #

    We have a saying at my house

    Just keep going because we have no choices.

    Another saying is that desperation can lead to inspiration

    I choose to believe that tomorrow will be better than today

    I wish, hope and pray that for us ALL!

  15. michael April 16, 2015 at 7:40 am #

    Night terrors. They’re not just for kids. But the sun always rises. Some days you just can’t see it through the clouds. Then, when all seems lost along comes that glorious day when the brightness is nearly blinding, but the warmth is welcome.

  16. Dale April 16, 2015 at 10:08 am #

    Yup, God gives us a new day each morning to try and start over.

    Last night reading through some of this I quietly shared some of my “well we’re just screwed” thoughts with the resident ghost that lives in this old 1765 house.

    Unfortunately I woke up with the same thoughts.

    Looking forward to some positive updates from Vedrana hopefully after the 24th.

    Or anything that is actually working for anyone.

    • michael April 16, 2015 at 10:59 am #

      Hi Dale, I do not know how well The Wahls Protocol is working but I do believe the progression of the disease has been slowed during the two years we have been eating a Paleo diet and using estim. It gives us focus anyway, and it beats waiting for a pill. My book Mr Wilson Makes it Home tells our story in a roundabout way, it’s really about our relationship struggles helped by a rescue dog which is how I found this blog, Richard wrote a similar book.

      • Dale April 16, 2015 at 11:06 am #

        Richard has met Terry Wahls. She is firmly dedicated to the concept. But seems neither of us know anyone who’s really seen improvement beyond the fact it is simply a healthy way to eat.

        But attitude is everything. Keep it up.

      • Dale April 16, 2015 at 11:59 am #

        OK so yeah we really have a ghost. The only one around here that laughs at my jokes or cares about my stories besides our own Wonderdog. But she’s easy.

        Thinking estim was basically a TENS unit I Googled it. Wowza. LOL

  17. Betty April 16, 2015 at 12:58 pm #

    I’m a Wahls Warrior. I’ve been following Terry’s lifestyle protocol for 2.5 years now. I absolutely do see improvement from a Paleo and nutrient rich diet, meditation, exercise and e-stim. It’s small steps and in whispers, but my symptoms are changing for the better w/ sustained energy, clarity, improved strength and subtle awakenings e.g. wriggling toes that haven’t moved in years. I am also in year 2 of a phase 2b clinical trial for Opexa’s Tcelna, and I hope to make it in to Acorda’s next phase of their human monoclonal rHigM22 study. I’m a 20 year veteran of this disease. I waver in denial, and revel in hope, and as Richard braving the stem cell therapy I will give “it” all I’ve got; for me, for you, for answers, and for the end of MS as we know it. Hang in there everyone.

    • michael April 16, 2015 at 3:51 pm #

      Great message, thank you Betty! We are 20 plus years in as well, no discernable improvement yet with Dr Wahls but a slowing of decline.

      • Betty April 16, 2015 at 4:12 pm #

        Michael, give it time. Cells are rebuilding. Believe it, and keep going.

    • Christopher April 17, 2015 at 9:32 am #

      Be careful of the Acorda study. mAb’s can be dangerous, especially if you have already been on immune modifying drugs. It could leave you open to serious opportunistic infections, like JC virus (the virus responsible for PML). Monoclonal antibodies (mAbs) are very powerful immune modifying drugs that are also heavily immune suppressive. They work incredibly well in many cases–one good example is Tysabri as a first line disease modifying drug for relapsing-remitting MS–but they are still making considerable and permanent changes to the recipient’s immune system. So please make sure to fully look into the initial research study results with doctor familiar with translating medical research trial results. Abstracts aren’t specific enough to give a thorough accounting of the trial details, and can many times be very misleading about risks and benefits. Please don’t let what I’ve written here dissuade you from looking for new options, or think that it is all negative with little hope. That’s not my intention. I’m basically writing this to reinforce the need to be cautious in this day and age where the ubiquitous access to information can cause as many problems as it can be beneficial. Good luck to you, and I hope your hunting pays off. Actually I have been following Opexa’s T-celna for a while and hope it eventually pays off. Interesting biotechnology.

  18. Dale April 16, 2015 at 5:24 pm #

    Will take another look at it. Not easy under the circumstances. Especially after my kids overheard me mumbling ‘I hate food’ under my breath making dinner a while ago.

    Think last I exchanged with Richard about it one of the limitations seemed to be no single malt scotch. One of the most valuable life lessons learned in grad school was the differences in brand from a prof that worked out of Aberdeen. I know it sounds ridiculous but that knowledge has come in very handy over the years. Especially with old philanthropists that really know their scotch. Most women don’t know the language so it’s been helpful gaining credibility.

    Sorry, I’m still chuckling at the first 20 Google references to estim.

  19. Yvonne April 16, 2015 at 8:34 pm #

    Guys, I hope you all know what a difference you make in this fight. On this blog the wonderful thing is what works or doesn’t work isn’t as important as the fact we’re all still swinging and sharing our knockouts and triumphs no matter how big or how small. The stories and laughs help us cope because it’s experience not a lot of “I saw a story about MS and they said…” Folks mean well but it’s annoying. Richard is the only real life person giving me first hand experience with stem cell and so I press my nose against the window of this blog every day. Not just for his experience but all of my fellow posters. I want Richard to win his fight for him but also for all of with our noses pushed against the glass. Thank you all for being MS front line warriors and not just spectators. Continue to kick MS ass standing, sitting wobbling or wheeling. Never give up ya’ll!!! 🙂

    • Joan Z April 17, 2015 at 6:13 am #

      Well said Yvonne, couldn’t agree more.

      Michael, I use the Bioness foot drop stim thingy, and have also said that it should provide some ‘pleasure’ for that price, giggling along with you over Google results. Finally, in those moments when the whole ‘am I eating right, taking the right meds, meditating enough, being a good person…’ overwhelms my thinking, I’ve been known to sarcastically suggest a carton of cigarettes and a case of beer for dinner. I like nor use either, but aren’t there times when that seems no more ridiculous than all the WTF stuff we try? I will, however, uncork a bottle of red wine and join you out on the deck with your single malt scotch, watch the grass grow and the pups play. Seems reasonable to me.

  20. Janis April 24, 2015 at 2:56 pm #

    Richard you asked the question where do we get the strength to keep going? As I haven’t walked in 13 years Life is difficult I get my strength from my children and my husband. Because I know I add value to their life. I also get strength from HOPE that one day I will be able to get out of this chair and stand on my own. It’s not easy to find the strength but I have to for my Family if not for myself. My very best to you Richard