Clinical Trials…A Difficult Decision, the Right One for My Family

FullSizeRender-3

In January 2013 as my parents explored the possibility of participating in an especially invasive clinical trial, my brothers and I waited. It was much earlier in the disease process then, and doing something so invasive didn’t make complete sense to me. As I grappled with denial, I wondered if the early Alzheimer’s diagnosis was even warranted. Inwardly, I certainly wasn’t ready to consider the option of an experimental procedure called deep brain stimulation. “Wasn’t she already going through enough?” I thought. “Aren’t there others that could do this?” My mom was never one to step too far out on a limb, “so why now?” The questions were incessant, but I stayed quiet. I knew that my parents would be careful in their consideration of joining a clinical trial, especially this one.

At some point, they asked for our thoughts on moving forward. The brain surgery involved placing wires in my mom’s brain and a pacemaker-like device in her chest. There was a 50% chance that after this surgery that she would be in the placebo group, and “the device placed in her brain wouldn’t even be turned on.” Everything inside me said, no, “I don’t want my mom to go through anything else”. But, I listened and heard the excitement, albeit mixed with concern in my parents’ voices. They were already frustrated by the daily struggles of my mother’s Alzheimer’s disease. Struggles that included forgetting friends’ names, feeling anxious and getting disoriented in a shopping mall and police having to take her home.

My parents were emboldened by the possibilities to make a difference that the clinical trial offered. So I agreed, “I think you should do it.” I see now that by taking part in this clinical trial and others, my mom and dad (her caregiver) have taken the power back. They have become part of the solution. They do it for my Aunt Ann, my mother’s sister who died of Alzheimer’s disease 25 years ago, and they do it for all those who will be diagnosed after my mom. They are not content to let Alzheimer’s continue to have the upper hand. They are an essential part of the movement toward a cure. It will probably not be the cure for my mom, but it may be the cure for one of us kids, or maybe her grandkids or maybe someone she will never know. The early questioning aside, the clinical trials have been the right thing, they have given my mom her power back.

Advertisements

14 thoughts on “Clinical Trials…A Difficult Decision, the Right One for My Family

  1. Wow, Chian I am so impressed and proud that I can call you family. What a nice tribute to your mom and your dad, as well. Very moving , loved it!

    Like

  2. Your mother is an inspiration and so brave! I have done one trial but it did not involve surgery. Not sure I could do that. What an amazing mother you have!

    Liked by 1 person

  3. Chi,
    Always have been impressed with your family and the goodness that they bring to the world. That being said, this doesn’t shock me…your parents are rock stars for giving so much to humanity and fighting this illness . So proud to say I know the Carmichaels!!!

    Liked by 1 person

  4. Rpn and Pat are an inspiration for all of us. Most people want to hide their condition and most would not have the courage to so publicly share the experience. Hats off to you both and your family!

    Liked by 1 person

  5. I just watched the 3TV story on your Mother. What beautiful parents you have!!! God bless you & your family! I must thank your mother & your family for participating in the clinical trial. Hopefully there will be some answers for all the Alzheimer’s patients diagnosed & to those that will get diagnosed. My father & I were the sole caregivers for my mother. This horrible disease took her from us 3 years ago. I’ve always wondered if there was something I could do. I was shocked to hear that it has been 10 years since the latest FDA medication was made available! I will keep you in my thoughts & prayers.

    Liked by 1 person

  6. Chian
    Thinking of you and your parents. Thank you for sharing your thoughts and feelings.
    Love and admiration for your mom and your family.
    Stephanie and Steve McCann

    Liked by 1 person

  7. Hi Chian,

    Your blog and vulnerable sharing are helping me move forward. I lost my sister, Patti to Alzheimer’s on May 6 of this year. She was only 68!

    I know Pat from working with her in the VNSA and met Ron at your home when Pat had me over about 8-10 years ago to teach her a computer program.

    Please tell them I signed up today for a clinical trial. It’s what I should have done years ago, but your family’s video story and blog have helped me move forward. It’s the right thing to do.

    God Bless you as you face the challenges of daily life. The Carmichaels are in my prayers.

    Liked by 1 person

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s