Choose Your Own Adventure! The Loeys-Dietz Syndrome Training Arc

Medical Disclaimer

The information provided here is meant to empower individuals to make informed decisions – it does not, however, replace a reader’s relationship with their doctor.

This article is a patient testimony, we cannot guarantee that it is error- free or complete.

Please speak with a qualified healthcare professional before making medical decisions. Research for LDS is ongoing. The Loeys-Dietz Syndrome Foundation Canada is not responsible

for the quality of the information or services provided by organizations mentioned on loeysdietzcanada.org, nor do we endorse any service, product, treatment, or therapy.

 

Choose Your Own Adventure! The LDS Training Arc

Written by: Amiel Buning

In continuing to unpack our LDS experience, one struggle I’d like to highlight is the concept of “decision-making”. In particular, after receiving your diagnosis and coming to terms with your chronic health condition, the next step (figuratively and literally) is to decide how you want to live your life moving forward. This is true not only from a mental perspective, but through daily actions as you start to notice the psychological and physical effects that LDS has on your body. Consider the following questions:

  • Do you start feeling fatigue after completing daily tasks? (i.e., walking to the mailbox, cleaning the house, carrying laundry basket, standing up for too long while cooking)
  • Have you found yourself modifying your exercise regimen in fear of over-doing it? (i.e., lowering the number of reps, doing less cardio, limiting the amount of times you work out per week)
  • Do you feel reluctant to continue your physical activities now that you’re aware you have LDS? (i.e., playing sports, weightlifting, hiking, anything that involves aerobics, flexibility, or muscle training is now put “on-hold”)

If you answered, “yes”, to any of the above questions, it is most likely that you find yourself at a fork-in-the-road and now you must decide which path to take. Do you continue living your life as normal? Or do you adjust your daily activities in accordance with your condition?

Speaking from personal experience, I found myself in the latter half, trying my best to make adjustments to fit healthy forms of physical movement while being cautious of having LDS. Quite often, I found myself doing one (or all) of these three things:

  • Completing “Trial and Error” Phases
    • Yes this activity worked for me;
    • Yes, this activity worked for me, HOWEVER, I can only do it “X” amount of times a week; so I need to make adjustments to my movement and plan my time accordingly;
    • No, this activity did not work out for me at all!
  • Testing My New Limits (Formula: Minutes Per Amount of Energy Exerted)
    • How many minutes can I go on a walk before I get tired?
    • How fast can I cycle on this stationary bike before my heart rate begins to spike?
    • How many pounds can I lift before I feel strained?
    • How many sets in my workout can I do before my body feels like giving up?
  • Determining the Cause of Limitation
    • Was I limited in my physical activity due to mental reasons?
    • Was I limited in my physical activity due to psychological reasons?
    • Was I limited in my physical activity due to physical reasons?

While I am not a medical professional, I found that this method worked for me as it accomplishes many things at once. First and foremost, it tracks my daily movement intake, making it easier to know what works and what does not for my body. Second, it sets realistic boundaries or “stopping points” noting when I should stop doing a certain physical activity. In this case, I see this as my body’s way of communicating to me its “tired” or it’s at its limit. Thirdly, it helps regulate my emotions as I have to use problem-solving skills and emotional intuition to decide why my body is feeling fatigued. During one of my many doctor appointments at St. Michael’s Hospital in Toronto, I was told that some of my profound physical limitations and lack of energy comes from a psychological side-effect of being diagnosed with LDS. As seen in my MRI and CT scans, there was nothing indicating a physical limitation as caused by my heart or blood vessels, and so, sometimes these limitations are chalked up to a  “mind-to-body” connection. In other words, “I think therefore I am” is taking place in my mind, as my brain feels and believes it is too tired to complete a physical task, which then sends this signal to my body, thus making me feel weaker. This took place for about 6 months where I stopped working out completely and got swallowed up by the pain and inflammation.

I want to reiterate that while this checklist is made to help LDS patients combat a sedentary lifestyle, it’s important to remember that LDS in itself affects everyone differently, taking form through different strands, and further divided into different levels of severity. Therefore, my experiences with medical specialists and my journey of physical prowess will be different from everyone else’s. Furthering this comparison, if live were a video game (like many metaphors and movies suggests), we have to take into account the individual experiences, emotions, and struggles that make up the protagonist (that’s us!) of the story. In wanting to build the best character (or looking to create the best version of ourselves), we have to build our character from the ground-up, level up in different categories, and progress through life via hardships and adversaries. For our true power lies in our ability to overcome such obstacles and make the right (and hard) choices to increase our quality of life.

For more information on how to master the art of “decision-making” and remaining physically active, see the LDSFC website as well as these recommended sources:

~ How to Gage your Mild-to-Moderate Physical Activity! ~

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