More “me” Progress



Yeah for Lumizyme! The stuff works!

I had another physical therapy evaluation this week and the news was once again promising. I have continued to improve and showed increased strength in every muscle group – some more than others which is totally understandable since some are weaker than others to start with.

This week we’re going to start “test driving” manual wheelchairs, I hope to be able to use one full time before my next overseas adventure. It’s a goal, but if it is realistic or not – only time will tell. It is somewhat difficult to set goals with Pompe because everything is so new and undocumented with the availability of Lumizyme. In the past, someone with Muscular Dystrophy could expect to grow weaker and weaker as the disease progressed. But now, with a treatment available and a fierce diet and exercise routine to follow – no one really knows what the future holds for me. I can promise you this – I will keep fighting!

I’m also sleeping better, I can actually sleep lying flat now and don’t have to worry about waking up with a headache. That has not been something I’ve been able to do for several years. The pain is almost entirely gone. I still get flare ups every so often, but they are only in my legs and are much less severe than they were a year ago. The only pain killer I take is Aleve, and I’ve only had to take it a couple of times since starting my Lumizyme infusions.

Thanks to Lumizyme, diet, and exercise I’m slowing taking my life back from Pompe. Some days are harder than others, but for the most part my new lifestyle works for me and is helping me fight Pompe.


  1. I’m super happy to hear that you keep seeing improvement. That’s great Monique. It’s a lot of work to stick to diet, exercise, regular infusions and all those other things that make life busy. Nice to see it paying off!


    1. You’re right Brad, it is hard work, but most things in life worth anything are hard work. Sometimes we just need a vacation from Pompe right?

  2. Oh, my, I’m going through the same stuff. 😀

    Before ERT, the symptom progression was fast enough that I coulnd’t adapt emotionally, so it was hard to react and undertake diet, exercises etc. After ERT, it became SO MUCH manageable.

    I am proud to say that, even when I had a six months ERT hiatus, I kept improving my physical condition thanks to an active routine.

    1. Interesting to hear that you were able to continue to improve even without the ERT. That is fantastic news! I hope that encourages more people to get in touch with a physcial therapist and get active. Thanks Ismael!

  3. This is so wonderful. My sister & I aero lumizyme as well. We feel a lot better too. Good luck and much success.

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