Truth be Told

A quick thought. I have received many generous responses to the last post about my new stem cell infusion. It happened today. Many wished me well and the strength to endure the pain. I read the word, bravery, in numerous responses. I have to be honest here, maybe even return the medals and merit badges. If you are going to write a blog, you should at least occasionally tell the truth.
There was no pain and little bravery. My neurologist knew precisely what he was doing. It pains me to be nice to any neurologist, but he is good. A pinch of the needle, and the local anesthetic did its work. After that, I felt almost nothing. There s a mythology about certain procedures. Popular belief is that they are draconian, that Nazi doctors probably perfected them in the 1940s. I like that, because I am a professional wimp and perfectly prepared to dine out on self-serving misperception.
Alas, I cannot. My ninety-two year old mother would not approve. I will say, however, there was one element of the stem cell infusion that did come dangerously close to torture. The actual infusion process took, I don’t know, maybe fifteen minutes. Butt I was forced to lay on an examining table for close to three hours and take in two I V antibiotics that were part of the protocol. That had to be in violation of the Geneva Conventions.
Nothing is easy. Who ever said fighting MS would be easy?

24 Responses to Truth be Told

  1. Kim Lubeck August 27, 2014 at 10:15 pm #

    Dear Richard, thank you for your honest and candid commentary on this wonderful procedure. I am waiting (impatiently) for positive results of the trials and wish I could participate!! Hopefully someday.. I read your blog regularly and appreciate everything you do!!

    • Joan Kingham August 31, 2014 at 6:31 pm #

      Richard, this is so exciting to follow you on this Journey!! This is a powerful
      step in finding a cure for MS. Thank you for sharing with us–I would love to
      be involved in such a study! I have lived with MS since l976 and love doctors that are on the cutting edge of treatment. I pray you will have wonderful results
      from this stem cell infusion!! I have hope and faith that a cure will be found!!

  2. Brian August 27, 2014 at 10:59 pm #

    We’ll, I still think you’re pretty brave. But this is coming from someone who once passed out just from the thought of having a spinal tap! That’s right, I wasn’t even in the doctors office yet. Geez, I hate needles!!

    • Richard M. Cohen August 28, 2014 at 7:26 am #

      I cannot compete with that.

      Best,
      R.

  3. Grandma August 27, 2014 at 11:25 pm #

    Facing the unknown is brave.

  4. Jan August 27, 2014 at 11:46 pm #

    So it then appears from what you wrote that the majority of the pain was in both emotional anticipation and in the post-procedural unknown (forced to contemplate during about 3 hours in a likely cold, less than cozy environment of an exam table). A lot of bravery during that stark, quiet contemplation of the unknown, it seems to me.

    It reminds me that so much with MS seems to involve the unknown (for us and for others who really haven’t a clue). The battles within are perhaps even harder than the physical realities we may face–as I see it, anyway. We can physically overcome as best as we can, but thinking about it all can be more debilitating in various ways.

    As with my advice to those taking a first-ever MRI, recall the scene in the original “Raiders of the Lost Ark” movie when, toward the end, H. Ford and K. Allen survived because they did not open their eyes to the reality of what could be swirling around them. While not ignorant to what could be happening, Ford’s character entered into a certain space, then left alone that which what was beyond his control and waited patiently. Not easy things, hoping and trusting in the unknown can be.

    That was a movie. Richard, I applaud you for facing this in real life.

    • Richard M. Cohen August 28, 2014 at 8:55 am #

      I will tell you that it was cold, and I did contemplate whether to hjave a turkey sandwich. Prosaic.

      R.

      • Jan August 28, 2014 at 9:21 am #

        Okay, “business as usual…” Just getting hungry, were you? (Funny; rhetorical Q).

  5. MB August 27, 2014 at 11:49 pm #

    Yay, Richard, you lucky dog 🙂

  6. Linda Lazarus August 28, 2014 at 8:04 am #

    Best wishes. Good luck. Here’s hoping. My thoughts are with you. I feel your pain. Platitudes that, for once, have real meaning. And one last one..things will get better!

    • Richard M. Cohen August 28, 2014 at 8:55 am #

      Thanks.

      R.

  7. Jenny August 28, 2014 at 8:10 am #

    “Pioneer”…being one of the first on the way to discovering the new or unknown. We, as MSers know pain (daily/weekly injections, neuropathy, falling, etc). Your bravery, as well as the others in the trial, (or any people in disease trials) should be awarded and held in high appreciation of all. Fear of the unknown can cause just as much mental anguish (pain) as physical pain. So Richard, I am happy the physical pain of the infusion is minimal and pray the mental anguish waiting for possible results is also minimal. I believe we are all brave as we deal with the minute by minute effects of this disease and we are also pioneers as we travel through our journey with MS discovering new ways to cope and well…just live.

    • Richard M. Cohen August 28, 2014 at 8:57 am #

      Fair enough.

      R.

  8. Yvonne August 28, 2014 at 3:44 pm #

    “Feel any different yet?” My friends and family annoyed the CRAP outta me with that when ever I had a Solumedrol treatment after a relapse. Now that I’m PPMS no more treatments and they don’t quie understand why I’m not taking something to feel better. I cross my fingers that all goes well with you soon. My family can now ask about YOUR treatments “has he felt anything different yet?”I promise I will not bug you with “feel any different yet” each time they ask. 🙂
    Be well and I know you will keep us posted along the way.

    • Richard August 28, 2014 at 8:26 pm #

      Nothing differebt yet,

      Patience.

      R.

  9. David August 29, 2014 at 10:14 am #

    Give yourself some credit. Aside from venturing into the unknown universe of stem cell therapy; honesty is an act of bravery, in and of itself.

    • cohen August 30, 2014 at 8:00 am #

      Maybe.

  10. Mary Ann Paredes August 29, 2014 at 5:06 pm #

    Thank you for writing about your journey. I see one of Dr. Sadiq’sfellow doctors at his office and asked about the trial. I am excited and apprehensive about what will happen to the patients involved. I’ve had MS since I was 15 and this is my 21st year with the disease. As my body slowly deteriorated since my teens, your writing helps me in looking to the future. Even though nothing is happening yet, it might. Please keep updating your site for more news. I just bought my first foot brace today, so this study gives me hope something, anything will change for the better. I know as you know, we’d endure much more pain to reverse the effects of the disease.

    Warmest thoughts to you, I’m not giving up if you don’t –
    Mary Ann
    PS: as far as MS being wired – my parents thought I would end up on Jerry Lewis’ telethon when I was a kid. Awareness has come along way – only wish we had used the “Ice bucket challenge” first.

    • cohen August 30, 2014 at 8:06 am #

      Mary Ann-

      I am not going anywhere, and frankly I am glad nobody is dumping ice water on my head. Meredith did it twice and said it was “shocking,” though she does not regret doing it. I would settle for warm water. I always am cold.

      R.

    • nancy s August 31, 2014 at 11:25 am #

      Mary Ann, does the foot brace help with foot drop? How? What did wou buy?

      Best to all of us for a better tomorrow. nancy

      • David August 31, 2014 at 5:16 pm #

        I read your post regarding foot braces (Mary Ann). When I was still able to walk with a cane, I experimented with foot braces (as long as insurance participated). The generic plastic models weren’t anything to write home about; but I was able to obtain a pair of custom fitted polymer ones that were very lightweight and fit nicely inside a pair of socks and loafers. The gentleman that fashioned them for me specialized in prosthetics for foot and leg amputees. You might want to explore that option.

      • Mary Ann September 15, 2014 at 11:46 am #

        Hi Nancy,

        It does work. I am sorry I didn’t see your note earlier. I walk for longer distances with it am have less fatigue. I will warn you – everyone will ask you what happened. But we’re used to that right?

        warmest,
        Mary Ann
        I bought a Dorsi Lite – fairly easy to use.

  11. Sheri September 8, 2014 at 9:49 am #

    I just started using a foot brace. My physical therapist recommended it for foot drop, and was able to send information to my doctor to write a prescription for it. I have a “Noodle” model from Kinetic Research made of carbon fiber. It is lightweight. It does help with the foot drop and is comfortable. It is called an “ankle foot orthosis” or AFO. This may not be the best web page on AFOs, but it describes them and has a picture of the Noodle (http://lermagazine.com/article/controlling-drop-foot-beyond-standard-afos). I had to go to an orthotics office where someone made a quick cast of my leg to customize it. A good physical therapist would know where these local resources are. In terms of physical therapists, I think it is better to find one that specializes in neuro issues. Someone who doesn’t have experience with neuro is not as helpful. Take care!

  12. Steve S. October 1, 2014 at 10:51 pm #

    Was your misspelling of the word “but” in this sentence intentional? 🙂

    Butt I was forced to lay on an examining table for close to three hours and take in two I “V antibiotics that were part of the protocol.”