New Zealand Pompe Network
  • Home
  • Our People
    • Our Patients >
      • Freda
      • Allyson
      • Christine
      • Dean
      • Samantha
      • Yakuta
      • Laurie
  • About Pompe
    • What is Pompe Disease?
    • Symptoms
    • Diagnosis
    • Treatments
    • Recommended Links
  • News and views
    • NZPN Conference 2018 Summary
    • Press Releases
    • Personal Media Stories
    • Blog
    • Allyson's Florida Blog
    • Success Stories >
      • Maryze
      • Brad
      • Monique
      • Ben
      • Brian
  • Clinical Trials
  • Air Travel
  • Donations & Fund Raising
  • Glossary
  • Accessible NZ
  • NZPN Membership
  • PHARMAC & Govt
    • Party stances on funding Rare Diseases
  • Contact us

Sunday - day before first infusion.

22/8/2011

5 Comments

 
Another very warm day here in Florida.  A lot of thunder and some rain to go with it too.

Had another 6 minute walk test this morning then came back for lunch and did my laundry.  When I came back to my apartment it had been cleaned - it's like magic! 
Tomorrow i'm being picked up in the morning to go and do more testing, and then after lunch my first infusion.  Pretty exciting stuff.  I've been reading for so long about others getting treatment for their pompe disease, it seemed like a pipedream for me.  I will be overnighting in the hospital for this first infusion. 

This week I will try to find a place that can rent me a mobility scooter so I can get around when I want to, give me a bit of independance.  The roads and drivers here are mad.  Pretty much everything that I need to exist is close by.  e.g. Supermarket, craft shop :)

And I saw another squirrel on my travels today, SO CUTE!!
5 Comments
Kim Farmer
22/8/2011 03:07:21 am

Hi Ally' ! That's GREAT !!! I have thought of you often over the past week, hoping that all is gong well for you. If prayers come true Sweet, you will beat this.
Luv ya Honey !
Hugs, Kim ;-)

Reply
Brad Crittenden link
22/8/2011 06:57:51 am

The first poke! How exciting! So happy to see that you're getting started. This was a long time coming!
Brad

Reply
vivienne armatage
22/8/2011 07:06:29 am

Hi Allyson, Heard through coffee group get to gether the other nite about you. Great to hear you've made Florida. We're all thinking of you and will keep our fingers, toes and anything else crossed for the treatment to be a success! Hang in there

Lots of Love

Viv, Dennis, Caitlin and Marc

Reply
davina
23/8/2011 11:19:49 am

hi allyson, yes, great when you pop out and the cleaning fairy has visited. now, if that fairy could hide in your luggage and reappear at your place in masterton. lol

Reply
Steve link
23/8/2011 01:38:04 pm

http://tvnz.co.nz/close-up/hoping-help-in-us-5-17-video-4363219

Aired on TVNZ Close Up show the night of your first infusion

Reply

Your comment will be posted after it is approved.


Leave a Reply.

    Author

    Allyson Lock.

    Archives

    February 2012
    January 2012
    December 2011
    November 2011
    October 2011
    September 2011
    August 2011
    July 2011
    June 2011
    April 2011
    March 2011

    Categories

    All
    Allyson's Florida Blog

    RSS Feed

Thank you for visiting us @ NZPN
  • Home
  • Our People
    • Our Patients >
      • Freda
      • Allyson
      • Christine
      • Dean
      • Samantha
      • Yakuta
      • Laurie
  • About Pompe
    • What is Pompe Disease?
    • Symptoms
    • Diagnosis
    • Treatments
    • Recommended Links
  • News and views
    • NZPN Conference 2018 Summary
    • Press Releases
    • Personal Media Stories
    • Blog
    • Allyson's Florida Blog
    • Success Stories >
      • Maryze
      • Brad
      • Monique
      • Ben
      • Brian
  • Clinical Trials
  • Air Travel
  • Donations & Fund Raising
  • Glossary
  • Accessible NZ
  • NZPN Membership
  • PHARMAC & Govt
    • Party stances on funding Rare Diseases
  • Contact us