visits, blood draws and trials, oh my

Visits, trials and blood draws, oh my. Today is and has been quite the day for me here at mgh. I’m sitting in the exam room here at the research center going through consent forms for research trials. The trials aspect of this disease is incredible as there are a few different forms that each have a variety of options to choose from. MGH is not lacking in that aspect.  There are clinical trials and research trials. First the clinical’s. So these are the drugs, man. The exploratory drugs that could potentially save my life, or, potentially turn my skin and eyes blue. (I’ve opted to pass on that one though, hard pass). Currently there are three trials running that could possibly work for me, one of them being the blue man group trial. So I have two that I’m looking into. I will be screening for one today, called np001 so I’ll focus on that. This is an infusion that showed to slow or halt progression in some individuals during the phase 2. Now, these individuals had high levels of baseline neural inflammation. Therefore, this phase of the trial is looking for those individuals with high baseline inflammation. Soooooo, weird but do I sit here and pray for neural inflammation? I’m not sure. It makes sense that if I could slow or halt this thing with an infusion, I want those high levels, but I have to imagine there is a host of other issues involved with neural inflammation. I can’t help but draw a comparison to our recent presidential election. I honestly don’t want either of these things, so which is the lesser of two evils. Do I want the Trump inflammation and the slew of other issues that could potentially go with it. Or the same old thing with Clinton and no clinical trial due to me not having that inflammation. Am I good where I am? Maybe it’s a stretch. I do not know.

Onto research trials. So I’m screening for a bunch of different trials today. These trials won’t necessarily help me out in any way, however they do provide my data for a better understanding of the disease. I feel pretty strongly that if it’s not too time consuming for me I will do everything I can to help. I’m currently enrolled in a research study called eat more. You heard right kids, EAT MORE. The idea is individuals who are a little overweight seem to last a bit longer and do a bit better. So they’re studying the effects of having one on one nutritionist meetings, against logging and tracking food in an app. I randomized into the app group. That means, woohooo. I get an iPad. A shiny new iPad just for me. Everything is coming up T! It’s interesting that for all these years I have been eating clean and healthy in order to lose weight, and now I have to eat the same way, but GAIN weight. When I first found out about my diagnosis, we knew I couldn’t lose weight so we came up with the number 3000. I have been eating 3000 calories a day since July. Do you know how hard it is to eat 3000 calories of healthy organic food? Think of it like this, take your typical breakfast, and then add 500 calories to it. Say you had 2 eggs and two strips of bacon for breakfast. Well take that and then add 3 avocados to that, and now you’ve hit your mark, FOR BREAKFAST. Over all It breaks down to needing to eat about 700 calories a meal, and 700 calories of snacks. Now, if I could go to mcdonalds I could get that easy in one meal. Or the Cheesecake Factory, my god, I could fill my quota for the week. Unfortunately it doesn’t work that way. Ground beef has become my best friend. Well that and cashews. Those little beauties add 180 calories for 20 cashews. I feel like I may soon turn into a cashew. Pretty nuts right?

 I do feel pretty strongly about committing myself to these research trials. They run alongside whatever clinical trial I’m in. To me, the benefits first and foremost are that I get seen at the clinic more. I get to come in and ask questions in person more frequently. That’s important. But also it’s important for me to give back and feel like I’m contributing a little piece to the understanding of this disease. Every little bit helps, just like every vote counts. Even if we do elect high baseline levels of neural inflammation. At least we cast our vote.

   

Author: adventureoflivingblog

My name is T. For now I'll remain anonymous. I'm not really sure why, but it feels right. In July I was diagnosed with ALS. Faced with the choice, "Life or Death," I've chosen to live. But not just to live, but to really LIVE. This is my Adventure.

5 thoughts on “visits, blood draws and trials, oh my”

  1. I was made aware of your devastating news last night. I just read your entire blog and I hurt for you and your entire family. How unfair is this! You’re a courageous man, the acceptance of this disease and willingness to share your most inner feelings is remarkable. Your decision to be pro active, with whether it be in the experimental aspect or your bucket list, just shows everyone how strong you really are. The battle won’t be easy, however with family and friends, they will help you through. I’m available anytime you or your family needs to reach out.
    Love, Aunt Sharon

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  2. The past few months have been the most devastating we have ever lived through. And you know we have already lived through some devastation. But reading your words and understanding that we (and YOU) are LIVING through this is so important. You already know we love you. You already know we are here for you no matter what, and you already know we would do anything for you. Those things are obvious because we are family. Now what we all need to do is live our lives with you. I love you with my heart and soul … And you already know that.

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  3. You have always been a bright, handsome and shiny powerhouse of energy and now you have shone your light on a horrible disease and revealed your inner self. And what an articulate, amazing self that is!!! As you said so eloquently, the telling is horrible, and for those of us hearing and coming to terms with it, the news is truly devastating but your words and thoughts help us accept and join with you in your fight. You are on a journey, a journey none of us want you to be on, but those who love you will be there every step of the way. We will think of you every day, we will hold you in our hearts and prayers and we will love you, your beautiful wife and your family.

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  4. Oh my is right. Your writing is stunning.
    Makes me smile and cry at the same time. Thank you for opening up and sharing with everyone. It helps bring the reality into this surreal sucky situation. I think of you and Lauren and this journey EVERYDAY. Always in my heart.
    Much love
    Lesley

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  5. Tuck, from the moment I learned this news I have thought of you and L Every.Single.Day. The ups, the downs, the fear, the love all of it. What YOU and L go through in the course of a day consumes me sometimes because life sucks sometimes even when it actually doesn’t, it’s just inconvenient, or youre having a bad day and tomorrow it all goes away,but you dont have that luxury. I know the energy you give this world and it makes me SO angry that this is your story. You are brave. You are special and you are so very loved. Stay strong.

    Love,
    K

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