Firstly, my dear friend Brad from Canada, arrived here last Monday night and stayed with me for a few nights before we headed off to San Antonio, Texas. Brad has Pompe also. I had never met him in person before, but when we met it felt like we had known each other for a long time. He is very special to me because the very first day that I was diagnosed, I went looking on the internet for information and support, Brad was the first person who spoke to me, gave me hope and carried me along with his great sense of humour, and we have communicated often for more than a year, sharing jokes, information, and even poking fun at our situation at times. It is almost…almost…worth having this disease to meet wonderful people like him. Thank you Brad, we will be friends for a long time. Love you heaps.
Monday, the day Brad arrived, I had my 4th infusion. I had all of the testing that morning, pulmonary function, quantative muscle testing and 6 minute walk test. After lunch was my infusion. All went well again, no bad reactions. I got home that evening at 7.30, Brad arrived at 10.45pm and we went out for dinner at the local sports bar. A long day but all good!
Tuesday we went to the Harn Museum of Modern Art, the Museum of Natural History, and the Butterfly Rainforest here in Gainesville. We must have spent around an hour in the butterfly rainforest. The butterflies were so beautiful and the surroundings so serene. There was a lady there who must have had some nice sweet smelling cream or something on her legs, because the butterflies were landing all over her legs and she was walking around with them all stuck to her. It was pretty funny!
Tuesday afternoon we went to Paynes Prairie. There were 3 alligators in the lake this time. Of course Brad and I think they are cool because Canada and New Zealand don’t have alligators in the wild at all. Whew! We also saw lots of deer, squirrels and pretty birds. I particularly like the bright red cardinals.
Wednesday we headed on down to Orlando arriving at Disneyworld at 9.30am. We rode rides, we scootered around, we hung out with friends, we ate food, and I tried SUSHI for the very first time ever, and it was YUM! I didn’t see Mickey Mouse but I did see Donald Duck, I do prefer Donald to Mickey so I was pretty rapt. He was wearing a sombrero though so I don’t know what was up with that! Didn’t he used to have a sailor's hat? We stayed at Epcot (New Zealand had a food stall there!) at Disneyworld till 6pm then caught the monorail and ferry over to the Magic Kingdom. We arrived at 7 just in time to trip over all of the people who were sitting along the footpaths waiting for the parade which starts at 8pm, so that wasn’t very good timing on our part! So we went down the middle of the roads where the parade was to follow, it felt like we were our own little parade lol.
You can't go to a theme park without getting a goofy photo of yourself and your friends!
The castle was all lit up with wonderful light displays. At 9pm the fireworks began, it was so beautiful. It’s easy to get caught up in the “magic” of it all, no wonder they call it the “Magic Kingdom”.
Following the fireworks it was going home time. We got the ferry and monorail back to the car which took us till around 11pm because so many people were all leaving at the same time. We didn’t get back to Gainesville until after 1 in the morning…zzzzzz
Thursday morning we organised ourselves to get to the airport here in Gainesville and winged (wung???) our way via Atlanta, Georgia to San Antonio, Texas. It was a tight connection and we made our flight in Atlanta with only 6 minutes to spare! We arrived in Texas at 5pm and got a taxi to our hotel on the Riverwalk. We met a few other Pompe patients in the lobby and went to dinner at a Mexican restaurant. It was wonderful to meet all of the people we have been on facebook and other parts of the internet with for a long time. And they all walk funny like me! Made me feel kind of normal!
The reason for our visit to Texas was to attend the 2011 AMDA/IPA Patient and Scientific Conference.
I’m extremely fortunate to have been funded by the International Pompe Association and the Acid Maltase Deficiency Association to attend this conference. The expertise there was phenomenal. I wish our government and the people who run Pharmac, who deny us the right to live, could have been there to hear the evidence and wonderful stories which have allowed people the world over to live long and relatively healthy lives with the treatment available to us. Well when I say “us”, I mean people in 52 OTHER countries, NOT New Zealand! I hope that one day John Key and his people in Pharmac will get with the 21st century and embrace these new wonderful treatments that are making their way into our world. You never know when you might be the one who needs them. I never thought I would be one of those. We never do, do we? Who has heard of Pompe Disease and Enzyme Replacement Therapy? Not me! Well, not until last year.
Trevor in the middle
I had the pleasure of meeting a young man named Trevor who has Pompe Disease. Trevor is 21 and lives in Canada. He is totally wheelchair dependant. Fortunately he is not on a ventilator. Trevor has a wonderful sense of humour. We had great fun racing our wheelchairs and scooters against each other. I was always the loser. He has 2 motors on his so he had a distinct advantage in my humble opinion! One word Trevor never uses is the word “can’t”. He said that when he was younger he could play hockey and do kid stuff and over the years as Pompe took its toll on his body, he said he might not be able to play hockey any more, but he would be “the best darned hockey watcher in Canada”! I think we can all learn a wonderful lesson from Trevor. Glad to know you Trevor, you are an inspiration!
Another inspirational person to me is Mike. I have mentioned Mike in my previous blogs, yesterday he spent 10 whole hours off his ventilator…and guess what! He’s going HOME to his own house on the 18th of THIS MONTH! Over 4 years and 6 months since he found himself in the emergency room with respiratory failure. Wow, brings tears to my eyes that story. The same thing happened to me last year, I’m just so lucky they didn’t stick a tube in my neck! We’ll be going to New Jersey to see Mike in his HOME in November. Diaphragmatic pacemakers, look it up, totally cool!
That's enough blogging for now. Still got more on Texas and an introduction to "Russ" in the next blog...