Progress Report

 

I’m so excited to share this news with you. I had a physical therapy assessment this week and it showed that I had slightly increased strength in both my legs and arms!

That is still a little crazy for me to really wrap my head around. I mean, I know I’ve been working hard by sticking to my Lumizyme infusion schedule, along with my diet and physical therapy program – but to finally have tangible data that I’m really improving is… in a word: Thrilling!

Pompe is a progressive degenerative muscle disease. The course it is supposed to take is to make me weaker and weaker until… well, there’s obviously no reason to go down that dark alley now. I am stubborn, I always have been and I chose to fight back – so take that Pompe! I couldn’t have done it without the help of my entire medical team including my friends at Genzyme, Dr. Byrne, and my physical therapist Tina. You guys rock!

Again, take that Pompe!

15 comments

  1. I’m soooooo happy! 🙂 That’s awesome Monique. It’s nice to see that hard work turn into good news. Way to go!

    Brad

  2. Great!!! We need data like this to convince skeptical governments. They can’t argue with results like this. ERT does indeed work for adults.

    Great blog too Monique,
    John (Brad’s Dad)

  3. Monique that is SO cool! You’re an inspiration to all of us! Even those without pompe (still not giving it a capital “p”!)

    I think everyone here in NZ is asleep at the wheel. It’s so hard to get anyone motivated to do anything here, but then what do they care, they’re not the ones dying, right? I’m starting to get BLOODY frustrated!

    Allyson

    1. Allyson:

      We’ll get you there too – I know the wait and all the BS is frustrating, and you have EVERY RIGHT to be upset and frustrated with the process. I am frustrated with what you are going through too – I want you and everyone with Pompe to be on ERT. IT WORKS!

      I’ve actually talked to my PT about starting to do more testing that we can document which I hope will help folks like you.

      Don’t give up!

      Monique

    1. Thank you so much Mike! And even with this good news, no rest for me I will get up tomorrow and keep fighting – we have to!

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