Quick Update

Wow – time has just flown by and I haven’t posted anything for weeks! So, here is yet another quick update until I have a chance to really sit down and walk you through the adventures of the past few weeks. Whenever I post something about quick updates, you know I’ve been busy.

 

Regina and I at the Italian Pavilion at Epcot. I met Regina while studying in England and we traveled to the real Venice, Italy together.

After I returned from Copenhagen, I had back to back visitors. I love visitors, don’t get me wrong, but spending all day running around with my fabulous friends doesn’t leave much time blogging. My dad and his best friend Allen spent a few days taking on Walt Disney World together and then my friend Regina and her fiancé spent a week here too. Epcot’s International Food & Wine Festival was in full swing and the weather was great so we had a wonderful time. Sadly, today is the last day of the Festival.

The pulmonary function test box - something most Pompe patients are very familiar with.

I had a check-up appointment at the Mayo Clinic with my neurologist at the beginning of November. He hadn’t seen me since I started my Lumizyme treatments and couldn’t believe how much I had improved with treatment along with diet and physical therapy. He ran another pulmonary function test (PFT) and an overnight pulse ox. The nurse who conducted my PFT was able to immediately compare my results from the last PFT I took in the beginning of the year. She said I had improved across the board, which is great! I’m still weaker than most people, those who don’t have Pompe or some other sort of pulmonary disease, but at least now I’m not getting worse. I have should have the official test results mailed to me in a few weeks and then I’ll know more. I’ll also be able to send copies of the test results to the University of Florida to add to the Pompe Registry. If you haven’t enrolled in the Pompe Registry, I highly suggest you do as all the data they can collect from us “lab rats” helps their research which helps us. Ask your doctor or Genzyme Case Manager about the Pompe Registry if you‘d like to know more.

Since I had an overnight test at Mayo I decided to spend a few days exploring St. Augustine. It is the oldest city in America which means it packed with history and of course tourist traps. I’ll post an “Accessible Travel” entry about my visit to St. Augustine soon.

My dad is visiting so we’re doing what we love to do – travel. We took a 4 night Disney Cruise to the Bahamas. Spectacular! More information about that trip will also follow in an “Accessible Travel” entry.

Yesterday, we spent the day with Dr. Bryne and his wife at Epcot and the Magic Kingdom. Doesn’t everyone hang out at a theme park with their world renowned doctor? Just another Saturday right?

Today Dad and I are taking a road trip to Washington DC – one of our favorite places! For a couple of museum geeks like us – it doesn’t get much better than DC. This trip will also allow me to write another “Accessible Travel” entry.

So that’s about it – for now. I’m doing well and living life to fullest. I still have my bad days and I try not to push myself too hard. Each day continues to be a battle against Pompe, but I’m really learning to balance things and managing my disease is becoming more and more routine.

A beautiful day in the Bahamas at Disney’s Castaway Cay. Life with Pompe doesn’t always have to suck!

 

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2 comments

  1. Wonderful update! It is amazing how we become experts on managing this disease and all that goes with it. You have worked so hard this past year and it is paying off. 🙂

    A day with Dr.Bryne is quite a treat!! I am glad you were all able to hang out.

    Enjoy D.C. and hope to see you soon! (Btw…we are 2 1/2 hours north of D.C. I think you asked me that some time ago!

    Talk soon,
    DC & Co.

  2. Awesome that you’re expecting good pft news. That’s exciting! You should reward yourself with a great vacation, or spend some time with family and friends, lol!

    You know what? There’s more than one way to beat this disease, and you’re doing it! Nobody’s life is perfect. Everyone has challenges, they’re just different ones. “Life with Pompe doesn’t always have to suck!” – I like it!

    Brad

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