A Wish

Meredith and I are going to Chicago for our daughter Lily’s college graduation. She is our youngest and follows her brothers into the workplace. She actually has had a job lined up since December. We told her we are changing our names and moving. What she said in return cannot be repeated to a G rated audience.
I am going to be off radar for almost a week. Probably most of you own cell phones that can send emails, make French toast and do your taxes. I only send and receive calls. How retro. When I check the blog with the intention of responding, it quickly becomes clear that you are talking to each other. I usually feel that it would be intrusive for me to weigh in. A blogger is motivated either by a wish to ignite a conversation or the need to sound off. I bore myself. You guys are a self-sufficient group and need no prompting from me.
In the five days I am away, please figure everything out. Answer the unanswerable. Cure MS and other chronic illnesses. Do what I never will be able to do. Come up with solutions. Dabble in wisdom. Bring us peace.

38 Responses to A Wish

  1. Betty June 16, 2015 at 8:59 pm #

    Congrats Lily, and have a fine time R, M and family. We’ll do our best while you are away. No promises.

    • Richard M. Cohen June 17, 2015 at 8:21 pm #

      Deal.

      R.

  2. MB June 16, 2015 at 10:16 pm #

    We watched our son walk across the stage last year at the same university. Before the graduation I lamented on your blog that I wasn’t able to sit with my family because they only allowed one other person with you if you were in a chair. You suggested I ask Shapiro, so I did, and my whole family was able to sit with me. (Thanks)

    There are good people in the world. Sometimes you have to provide them with the opportunity to show it.

    Congrats to your girl. Love those milestones!

    • Richard M. Cohen June 17, 2015 at 8:22 pm #

      Morty is a good guy.

      R.

  3. Roberta June 16, 2015 at 11:56 pm #

    Have a glorious time! You provide a wonderful forum!
    Interesting about the French Toast. 🙂

    • Richard M. Cohen June 17, 2015 at 8:23 pm #

      Pancakes?

      R.

  4. Dale June 17, 2015 at 1:42 am #

    Woohoo! Lily will make a real difference in this world, of this I have no doubt. So glad you shared, have often wanted your perspective on your kids. I’m sure she has you wrapped around her finger though. The father daughter relationship is really special
    Yeah we’ll try not to make a mess while you’re gone, not disturb the neighbors or break anything. But I do crave more of you chiming in from time to time. You really have assembled a thoughtful collection of folks here but we’re here because of you.
    And I for one want to hear all the stories of this adventure. The kind that get better in the retelling.

    • Richard M. Cohen June 17, 2015 at 8:24 pm #

      You guys are wonderful

      R.

  5. Christopher June 17, 2015 at 2:26 am #

    Congratulations to your daughter, sir. Very exciting time in a young person’s life… the world seems endlessly open to all possibilities. I wish her much good fortune wherever her journey takes her.

    • Richard M. Cohen June 17, 2015 at 8:25 pm #

      Thanks, man.

      R.

  6. Joan Z June 17, 2015 at 9:46 am #

    Congratulations to the entire family, travel safely! We’ll try to behave.

    • Richard M. Cohen June 17, 2015 at 8:25 pm #

      Behave? Don’t know the word.

      R.

  7. Grandma June 17, 2015 at 11:14 am #

    Oh c’mon guys. When the cats away the mice will play. I enjoy reading this blog when no one is behaving. My life has way too much behaving in it!

    Congratulations Lily ! You’ve been taught by the best!

    • Richard M. Cohen June 17, 2015 at 8:27 pm #

      Thanks, Grandma.

      R.

    • Dale June 17, 2015 at 11:41 pm #

      Shhh… someone pinch the keys to the liquor cabinet before he goes…..

    • Dale June 17, 2015 at 11:41 pm #

      Shhh… someone pinch the keys to the liquor cabinet before he goes…..

  8. Jan June 17, 2015 at 11:35 am #

    Hi Richard; kind of you to let everyone know… all the best to Lily and her family during this milestone event (in my hometown). I hope you can experience “just” being proud parents like everyone else, with the focus on her.

    Gosh, diapers did not seem so long ago? If it were me, I’d bring some Kleenex for when Pomp and Circumstance plays. 🙂

    • Jan June 17, 2015 at 7:35 pm #

      Oh, and congrats to Lily on the job. Not always an easy thing in this economy.

    • Richard M. Cohen June 17, 2015 at 8:28 pm #

      Diapers to degrees.

      Awesome.

      R.

  9. MB June 17, 2015 at 2:30 pm #

    I have a question. Does anyone believe in the pseudo-science of neuroplasticity? I for one have been going to occupational and physical therapy for years, have faithfully exercised at home, and even tried to will my hand and leg to work again, but no luck.

    I’m an atheist so prayer won’t work. Any other suggestions?

    • Christopher June 17, 2015 at 5:03 pm #

      Hi MB.

      It may seem like it most of the time, but neuroplasticity is far from “pseudo- science.” In fact, it’s been scientifically proven… from the hippocampal area where memories are created, to peripheral nerves which pick up initial sensory info. The problem isn’t what you are doing to facilitate growth, it’s what your body is doing to inhibit that neurogenesis and regenerative growth. That’s the process behind the research of a new peptide therapy for inhibiting the glial inhibitor protein. The drug is called Anti-LINGO-1, which is an antibody to the LINGO-1 protein that is produced by glial cells and inhibits myelin regeneration.

      Those exercises are good for you, and do promote neuronal growth. Also myelin is constantly being repaired, just mostly ineffectively.

    • Jan June 17, 2015 at 7:59 pm #

      MB, I really can’t offer suggestions, just my own perspective of what I’ve done. I’ve read books recently on neuroplasticity; never been on any MS meds in 10 years; am gluten-free, dairy-free at least 95% of the time.

      Still, a worst-ever MS attack this past Feb.–could not walk, hung onto a rolling chair to get through the house. I was not defeated: just did what I could do. I swim and then stretch in the pool (should stretch more on land but typically opt to challenge my brain with the WSJ/some freelance work/misc.)

      So then, why is it that, for the past two days I have experienced walking more in ways as in far earlier? Last month, a changed supplement approach, then added unflavored gelatin daily. Maybe that. Or maybe my mood and positivity. Am practicing 8 counts of 8 on land and in my thoughts to HOPEfully use next week. Regardless, I’m OPTIMISTIC about it all; simply about thinking about trying.

      And understanding of the “strangeness” of that MS dance study. But hmm… maybe there is something to that. As I see it, in a positive challenge, a different mental state to accompany all the other stuff to help. Next week will be my litmus test of that kind of a thing. We shall see. I may not make it; being of the mind to try may have to suffice–we’ll see.

      I am a Christian–that in itself may not help with the actual MS disease. But what it does help me with is my perspective, regardless of the situation. (Of course, better when things are easier, but I experience both sides of the health coin. It could matter which way the wind is blowing… or it could be something else).

      For me, I know that stress is huge. My outlook seems to matter. I read that you’ve experienced much OT/PT/the will to conquer. I just keep trying things. And ultimately, my outlook, expectations, food, and mood do matter for me.

      • Jan June 17, 2015 at 8:50 pm #

        More…

        On PBS recently, I saw neurologist David Perlmutter MD talk about gluten intolerance. I liked a lot of what he said. Check him out on LinkedIn or his website: http://www.perlmutterfoundation.org/

        And also, just because I’m liking my ankles better the past few days (nice if that will continue but who knows), it doesn’t mean that nausea and vision stuff improved greatly. I take what I can whenever I can.

      • Christopher June 17, 2015 at 9:30 pm #

        Dr. Perlmutter is a slick-talking, snake oil salesman. Some of his books, and talks, make good biological sense. The rest is new age hooey. He should stick to brains.

      • Joan Z June 18, 2015 at 5:23 pm #

        Wow, snake oil sales man, that’s harsh. Dr P was my neuro for >10 years. I always found him to be brilliant, open minded, usually entertaining, and only occasionally arrogant.

  10. Sandy Stolaronek June 17, 2015 at 2:42 pm #

    My son just graduated May 2, of this year from 4 years of college and we couldn’t have been prouder of him! He was offered a position right after graduation with a financial firm and soon will fly out of the nest to begin life on his own…..hopefully, haha! I admire your ability to travel and your will to get out there Richard; this is a difficult task for most of us…..I can still drive and make the occasional jaunt to my hometown in Cincinnati when I can. I think that we all have to try and live like we don’t have MS at times and venture out into the world. It makes us feel human again and once we return back home, we can lick our wounds and recover from the trip that felt like we just traveled half-way around the world. Have a nice time on your trip and I wish your daughter Lily all the best for her graduation and future endeavors 🙂

    • Richard M. Cohen June 17, 2015 at 8:31 pm #

      We have to keep pushing.

      R.

  11. grandma nancy June 17, 2015 at 3:21 pm #

    Double congrats to Lily. And Richard, I didn’t realize that there was someone else who only had a cell phone to make and receive calls. So old school.

  12. Anne June 17, 2015 at 7:19 pm #

    Congratulations to the proud parents and of course to your daughter. Enjoy your time away with your family.

    • Richard M. Cohen June 17, 2015 at 8:32 pm #

      Thanks.

      R.

  13. dale June 17, 2015 at 10:37 pm #

    I prefer the paper cups and string myself. Means my kids are close by.

  14. Jan June 18, 2015 at 7:55 am #

    Oh, gosh… the communication step in-between diapers and degrees: liked that!

    And Christopher, I do agree that one needs to be very cautious. There is a whole lot of stuff out there, some good; some not so.

  15. David June 18, 2015 at 1:59 pm #

    Congratulations to Lily and your whole family.Its family that matters most , each one of us wishing each other only the best.I tell my daughters to work hard and never forget to be kind to all you meet.

    If one of us discovers the cure to MS or other diseases when you are away, we will pass it on,I promise

    Any disease will do, oh how happy we all would be

    In an old Jimmy Durante song the wonderful line was make someone happy then you will be happy too, so true

  16. Christopher June 18, 2015 at 9:09 pm #

    @Joan Z…

    I don’t have a problem with him as a neurologist–he’s one of the best in the U.S.

    It’s when he goes on about gut bacteria, gluten intolerance, etc… that his expertise oversteps his actual knowledge. He does it with such confidence and authority that it’s almost believable, until you look at the actual science which is completely anecdotal and unsupported. I’m really not trying to knock the guy. But being a scientist, he should know better.

  17. Yvonne June 20, 2015 at 9:53 pm #

    So….who is jumping on the Biotin wagon? 300 mg 3x daily? I’m on the Biotin Facebook but just curious about this group.BTW Congratulations on the graduate Richard. We need to celebrate the things that go right 🙂

    • Anne June 21, 2015 at 3:58 pm #

      This is from the MS-UK.com site regarding Biotin. It does sound promising for visual problems. I would like to know more about the improvements in walking. At any rate I will discuss this with my neuro. I think we have to be very careful to ensure you are being followed by a physician with a dose this high of Biotin and that it is what is being used in the study, not something with other fillers. Hoping it the real deal and this second trial shows great results.

      More positive data reported by MedDay
      (19/06/15)
      MedDay, a biotechnology company focused on the treatment of nervous system disorders is reporting additional positive data from its pivotal Phase III clinical trial, MS-SPI, with MD1003, a highly-concentrated pharmaceutical grade biotin, in patients with progressive multiple sclerosis.

      The data shows an improvement of the Clinical Global Impression of change observed after 12 months of treatment with MD1003 and confirms the positive results presented at the American Academy of Neurology in April 2015.

      Frederic Sedel, Chief Executive Officer of MedDay, said: “We are pleased to announce further positive findings which confirm the promising MD1003 Phase III data announced earlier this year. MD1003 remains the only drug to date that has demonstrated an ability to decrease the rate of disease progression and improve a significant proportion of patients with progressive MS.

      “A second phase III placebo-controlled trial is underway looking at the effect of MD1003 in MS patients with permanent visual loss following optic neuritis and we look forward to announcing data from this trial later this year and potentially investigating a drug filing thereafter.”

      The Clinical Global Impression of change is a seven point scale that requires the clinician to assess how much the patient’s illness has improved or worsened relative to a baseline state at the beginning of the intervention and rated as:

      One – very much improved;
      Two – much improved;
      three – minimally improved;
      Four – no change;
      Five – minimally worse;
      Six – much worse;
      Seven – very much worse.

      During the MS-SPI trial, the Clinical Global Impression of change has been assessed by the clinician (clinician global impression, CGI) as well as by the patient (subject global impression, SGI) after 12 months of treatment. Mean CGI and SGI scores assessed at month 12 were statistically significantly better in the intervention group compared with the placebo group.

      These results confirm the previously reported data of MS-SPI where the primary endpoint was defined as the proportion of patients who improved either on EDSS or on timed 25-foot walk (TW25) at M9, with a confirmation of the improvement at 12 months (M12) was met.

      The mean change of EDSS between M0 and M12 decreased in the MD1003 group compared to progression in the placebo group. In the MD1003 arm, only four per cent of patients treated with MD1003 exhibited EDSS progression at M9 confirmed at M12 vs 13 per cent in the placebo group (p=0.07), which equates to a 67 per cent decreased risk of progression in the active arm within the studied period.

      Source: Copyright PR Newswire © 2015 PR Newswire Association LLC (19/06/15)

      • Yvonne June 22, 2015 at 7:02 am #

        Thanks Ann. I’m in NJ with family this week and been reading about the positive effects, especially swollen foot. Since I am overdoing it and both feet are swollen I going to add it as a daily only with B12 injections. Reading that Thiamine may be beneficial. FDA and big pharm take too long and my neurologist knows about the same as me about the study. Going to get Pure Biotin when ger home. Throw enough shit at the wall……

  18. Dale June 25, 2015 at 12:00 am #

    Wonder what souvenirs Richard will bring home. We better not leave any of that white Biotin powder and the micro scale on the table though. Lord only knows who their next houseguest might be…..