Muscular Dystrophy

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    The Beauty of a Sick Plan

    I love a good plan. Several spreadsheets are required when I plan an event or when I was planning concerts as a music teacher. When I have a big project to accomplish, I break it down into manageable steps with due dates along the way. Checklists and To-Do lists are tools I use daily in my work and personal life. Organization is one of my innate talents.

    With any good plan, though, you have to have several back up plans. Early in my teaching career, I learned that flexibility is crucial. You have to be able to pivot mid-lesson depending on a wide array of variables such as a class that gets the concept right away, a fire drill in the middle of class, or even a bee that has made its way into the classroom. An unexpected event is always around the corner.

    My ability to plan and simultaneously be flexible has served me well as a mom to two boys with Congenital #MuscularDystrophy (CMD). Although they are not immonocompromised, we expect our boys to get sick especially during cold Wisconsin winters. A common cold can easily and quickly morph into pneumonia, so we are in the doctor’s office at the first sign of illness. Every time we visit their pulmonologist for a check up, we make and/or revise their sick plan, that is, a protocol we follow when they encounter any sort of illness. Of course we make sick plans hoping that we don’t have to use them, but I feel so much more at ease knowing we have one.

    A few examples:

    They have a cough that has descended into the lungs? We increase the use of their cough assist machine and ask the pediatrician for a chest x-ray.
    The youngest complains of a sore throat? We immediately go to the doctor for a strep throat test.
    Their cold is making it hard to breathe? We bring out the albuterol inhaler, use a saline spray for their nose, and increase the use of their BiPap.

    Over the years, I’ve decided living life with a contingency plan is a good way to live all of my life. Bad things will happen. No one is exempt. Better to plan for the unexpected than to believe all of life with be rainbows and kittens.

    I’ll always love a good plan but my expectations have changed over the years. Now I can scrap a good plan with a moment’s notice and not think twice about it. I’m learning.


    I'm new here!

    Hi, my name is Ellesigart. I'm here because I am emotionally binge eating because I’m sick of being in pain and useless.

    #MightyTogether #Anxiety #Depression #Fibromyalgia #MuscularDystrophy

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    If you are living with a late-onset rare disease, what advice do you have for others navigating their daily life?

    From family planning and relationships, to employment and retirement, living with late-onset rare disease can affect every single touchpoint in a person’s life (much more than others even realize).

    But there’s strength in community, so we'd love for you to pay it forward. What’s a piece of advice you can share about your day-to-day experiences with navigating rare disease? What’s helped? What hasn’t?

    ✏️ P.S. We’re creating a story with one of our partners, Catalyst, to raise awareness around late-onset rare disease. Your answer may be used in an upcoming editorial story on The Mighty.

    #RareDisease #LambertEatonMyasthenicSyndrome #MyastheniaGravis #CheckInWithMe #Spoonie #MentalHealth #LungCancer #SmallCellLungCancer #MuscularDystrophy #IntravenousImmunoglobulin #NeuromuscularDisease

    10 reactions 6 comments

    Struggling With My Diagnosis

    I have recently been diagnosed with a rare form of #MuscularDystrophy called oculopharyngeal muscular dystrophy, or OPMD for short. To be honest, I’m struggling with this. I’m concerned not only about the progression as I age, but also how this impacts my family.

    Although I’ve been experiencing symptoms for many years, it took my ophthalmologist to suggest I might have this disease. I followed up with a neurologist, who also believed I had this disease. I then got genetically tested and there was no denying what I had.

    Even though I had a good idea I had OPMD, I was still rocked by the definitive diagnosis. It made me sad, partly because I had to figure out how to navigate this, but also knowing that my siblings and children have a 50/50 chance of inheriting this.

    It’s never easy learning to live with limitations is it? I have to always be mindful of what I’m eating because swallowing difficulties has become a normal thing. It’s never comfortable trying to get food to go down without choking. It makes it a real challenge when I eat out or eat with other people at their home.

    Another challenge is the muscle weakness in my upper legs and arms. I usually do ok walking in my home, although I use a rollator on more challenging days. I have to use a cane going up and down stairs, and since I’m always with my husband, he makes sure I’m safe. The leg weakness also means that if I fall I cannot get up on my own. Someone has to help me stand.

    I do tend to spend a lot of time laying down, but that’s when I can do my best thinking and writing. I also listen to a lot of audio books and have a couple of coloring apps that I enjoy. I miss being able to do the things I could 25 years ago, but do my best to push myself a little to do things I’d rather not do.

    I’m always trying to figure out ways to adapt to my new normal and stay as active as I can, understanding that there will be bad days and days that aren’t so bad. No one wants to be diagnosed with #MuscularDystrophy in any form, but I’m thankful to have found a community where I can find support and get great ideas on how to move my life forward and deal with the increasing challenges

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    What advice do you have for someone who is newly diagnosed with a rare disease as an adult?

    Getting a rare disease diagnosis can be tough, but adding one on top of the complexities of adulthood can be even more challenging.

    What advice do you have for an adult who’s been newly diagnosed with a rare disease? How did you “adjust your sails” and adapt to make room for it?

    ✏️ P.S. We’re creating a story with one of our partners, Catalyst, to raise awareness around late-onset rare disease. Your answer may be used in an upcoming editorial story on The Mighty.

    #RareDisease #MuscularDystrophy #LungCancer #Spoonie #MentalHealth #LambertEatonMyasthenicSyndrome #MyastheniaGravis #neuromuscularimmunoglobulin #CheckInWithMe #SCLC

    9 reactions 7 comments

    Staying positive

    Staying positive can be so hard when you know you have a degenerative disease like muscular dystrophy. Some days it's really hard to just get through the day. I try hard to be grateful for all the things I can still do, I'm spite of my current limitations. I'm taking this adventure one day at a time and always remembering that today is a good day to have a good day.

    #StayPositive #MuscularDystrophy

    3 reactions

    I’m new here!

    Hi, my name is Sami46. I've been diagnosed with anxiety depression social anxiety ptsd ocd osteoarthritis neuropathy ckd scoliosis muscular dystrophy diabetes.I want to know how others deal with there diagnosis and how it effects daily life.

    #MightyTogether #Anxiety #Depression #Migraine #RheumatoidArthritis #PTSD #BipolarDisorder #OCD