Zoooooooom there goes another week!
This is the last blog on Texas apart from a little more in depth stuff about the conference itself in the next one.
We were treated to an afternoon at Sea World in San Antonio by the sponsors of the conference. My absolute favourite part was seeing Shamu and the other orcas. I’ve always wanted to see a killer whale, and finally I have. They are beautiful! They are large, but very agile. I know some people don’t particularly like to see these animals kept in captivity, and I’m probably more along those lines too, but, hypocritically, I have to say I totally enjoyed the show and the opportunity to see such beautiful animals. If you’re sitting down the front (which I wasn’t) to watch the show, be prepared to get totally soaked because that is what is known as the “splash zone”. The whales come along with their tales slapping the water to get you wet on purpose. It’s hilariously funny and extremely well executed! My favourite part of the show was at the end when Shamu came out of the water and did a summersault. Amazing!
Russ the bear is in the photo above, can you see him?
Here’s something I didn’t know; Shamu was the fourth killer whale (orca) ever captured (the second female) and was the third orca ever displayed in a public exhibit. She was the first orca to survive more than 13 months in captivity and was the star of a very popular killer whale show at SeaWorld San Diego in the mid - late 1960s. After her death in 1971, the name Shamu continued to be used in SeaWorld "Shamu" orca shows for different killer whales in different SeaWorld parks.
I thought there was just one Shamu!
On Friday evening, after looking around Sea World, we all attended the welcome dinner there for the conference attendees. It was a great opportunity to meet the rest of the people in a fun environment. The dinner was lovely. On the way in we were given a raffle ticket each. During the night I won a lovely glass ornament with a jellyfish (fake one) inside it which glows in the dark. It’s pretty cool.
Since we had been at Sea World all afternoon we didn’t have the opportunity to smarten ourselves up and a lot of people were arriving that were looking pretty swish! So I bought a flamingo headpiece to wear to the dinner as you do. There were many comments, all complimentary (I think). I think they may have been a little envious! You decide!
I’d also like to include a mention of how accessible different places are for those of us on a mobility scooter or in a wheelchair. There is no way I could have walked and seen everything at Sea World if I was not on Road Runner. We packed in a few miles! When you go on the rides you get to go through side gates and get in ahead of the crowd, you don’t have to line up, and if you cannot take your scooter or chair on the rides they do all they can to help you on board to specially accessible seats.
I also found the same of the airlines. You can take your wheels right up to the airplane door, then someone will stow them for you and meet you at the airplane door when you land if you wish. There will also be someone who will show you the way to your next gate and help you with your bags. I was lucky to have Brad to help me a lot too. It would be a little more intimidating going alone, but you really just need to tell them at the gate what your needs are and they go out of their way to help you. I was very very impressed! Particularly with Air New Zealand and Delta!
Last week I started using walking poles for exercise, to increase my core strength and improve my balance. I’ve been working with some physiotherapists who are doing therapy not only for Pompe but for other types of disorders which do similar things to your body. The comment was made today that my walking is improving and my posture is much better. It's hard work though I can tell you! Having to actually think about how you walk rather than it just coming naturally to you like "normal" people, is very hard. But hopefully sooner rather than later it will start to become second nature again. I'm also doing strength training for my breathing with a special little device I have to breathe in and out of. PLUS pilates exercises!
The physiotherapists, Jenna, Laura and Barb, are also the ones instrumental in getting the exercise video organised for handing out to Pompe patients. There has been a meeting already with the videographer and things are moving along nicely on that project. Stay tuned! Olivia Newton John will have nothing on us! Can you still get leg warmers? I used to have some pink ones, but I think I left them somewhere back in the 1980s.
Halloween has been and gone, and now all of the Christmas stuff is flooding into the stores. There's only 5 and a half weeks of school term left, then Christmas and then I get to see my little boys! Can't wait! The countdown is on :)
The Gators won today!
There goes another week! Time flies!
I still have more on Texas to talk about :)
One of my favourite things about visiting San Antonio was going to the Alamo.
What a great place to see. The thought of all of those famous names standing, and falling, right there where we were, all those years ago, was pretty awesome.
Two of the most recognised names of course;
David "Davy" Crockett (i'm going to have that song in my head for the rest of the night now...king of the wild frontieeeeeer...) was one of the most famous figures of his day. Born in Tennessee in 1786, Crockett had many adventures in his youth as a frontiersman and military scout. In the 1820s, he entered Tennessee politics and eventually served two terms in Congress. His reputation as a sharpshooter, hunter, and storyteller grew with his success, and many fanciful accounts of his life were published, both by Crockett and by those seeking to capitalize on his fame.
By 1835, Crockett had become disillusioned with politics and set off to explore Texas, departing Tennessee with the famous quote: "You may all go to hell and I will go to Texas." Crockett fell in love with Texas and joined the volunteers in the fight for Texas independence. He died at the Battle of the Alamo on March 6, 1836.
James "Jim" Bowie, a 19th-century American pioneer and soldier, played a prominent role in the Texas Revolution, culminating in his death at the Battle of the Alamo. Stories of him as a fighter and frontiersman, both real and fictitious, have made him a legendary figure in Texas history and a folk hero of American culture.
Born in Kentucky, Bowie spent most of his life in Louisiana, where he was raised and later worked as a land speculator. His rise to fame began in 1827 on reports of the Sandbar Fight. What began as a duel between two other men deteriorated into a melee in which Bowie, having been shot and stabbed, killed the sheriff of Rapides Parish with a large knife. This, and other stories of Bowie's prowess with the knife, led to the widespread popularity of the Bowie knife.
Bowie's reputation was cemented by his role in the Texas Revolution. After moving to Texas in 1830, Bowie became a Mexican citizen and married the daughter of the vice governor of the province. In January 1836, he arrived at the Alamo, where he commanded the volunteer forces until an illness left him bedridden. Bowie died with the other Alamo defenders on March 6.
We weren’t allowed to take photos inside unfortunately. It's also a big no no to touch the walls!
This is a photo I found on the internet to show what the inside looks like.
I like this following website which shows how the Alamo has changed over the years.
A L A M O I M A G E S
CHANGING VIEWS OF THE MISSION SAN ANTONIO DE VALERO
I have introduced Russ in a previous blog along with Betsy, one of my nurses. Betsy bought him his Gators outfit.
Here he is again at the Alamo;
Can you find him?
While we were walking around outside the Alamo looking at the sights, a lady commented on my “New Zealand” tee-shirt. I said “I’d recognise that OZ accent anywhere”! Turns out she was from Hamilton! *palm smacks forehead*! She was with her family, and had driven from the West Coast and was heading to Florida, having a driving holiday. So I had a yarn to her for a while. I wonder how many other Kiwis I pass without knowing it.
On the way back to the hotel after our Alamo visit, I fell off Road Runner! What an idiot! I was going up a gutter, it had rained a LOT the night before and there was a big puddle that I ended up in. Fortunately I was with some people who picked me up off the ground; thanks Theresa, Tim and Brad! There was no way I could have gotten out from underneath the scooter by myself. I'll have to get a helmet if I keep that sort of thing up!
And talking about rain in Texas, I have never in my life heard thunder like they have there. When they say everything is bigger in Texas, it is certainly true of a thunder storm! It rumbled and cracked like there was no tomorrow!
Thinking about tomorrow, I have my 6th infusion. I have noticed that my pain is lessening a lot and I even managed to roll over in bed one morning without having to pull myself up with my blankets or sit up to turn over. This may sound like nothing to a “normal” person, but to me it is a LOT! It’s only happened once, and it’s early days, but it’s an improvement!
Until next time, hope you all have a great week :)
A BIG Happy Birthday to my son Ben who was 10 this week :) 10 years has flown by.
What a lucky Mum I am to have 3 lovely sons. You make my world wonderful. Love you love you love you xoxoxo
Hi y’all! A little bit of Texan speak there…
I’m slowly coming back down to earth after the conference in Texas. I’ve been so busy with a new exercise routine plus the ongoing campaign back in New Zealand to get treatment funded for Pompe patients. The Prime Minister refuses to speak with anyone about it and the first day of this round of the campaign saw our supporters asked to leave Parliament by security guards. I’m just at a total loss as to why rare disease sufferers are not considered worth saving. Everywhere we turn we hit a brick wall. Maybe it is because our numbers are so small that we cannot make a big enough noise to be heard? Anyway, I’m not giving up the fight! Ever!
So, blog time…I still have lots on Texas.
The San Antonio Riverwalk; what a beautiful place to visit. Our hotel was across the road and around the corner. You can either take stairs down to the riverwalk or an elevator if you are wheeling your way around. There are so many shops, cafes and restaurants. Lots of tourists but not too crowded. The people are all friendly and cheerful, enjoying their time out and about. We were told it is a very popular city to have conferences, and hence there are a ton of hotels there!
The San Antonio River Walk (also known as Paseo del Río) (sounds like a great name for one of my miniature horses! "Half Pints Paseo del Rio" I like it, i'm using it!) is a network of walkways along the banks of the San Antonio River, one story beneath downtown San Antonio, Texas. Lined by bars, shops and restaurants, the River Walk is an important part of the city's urban fabric and a tourist attraction in its own right.
Today, the River Walk is an enormously successful special-case pedestrian street, one level down from the automobile street. The River Walk winds and loops under bridges as two parallel sidewalks lined with restaurants and shops, connecting the major tourist draws from the Alamo to Rivercenter mall, to the Arneson River Theatre, to Marriage Island, to La Villita, to HemisFair Park, to the Tower Life Building, to the San Antonio Museum of Art, and the Pearl Brewery.
The area was noted for being extremely dangerous (at one point, it was declared off-limits to military personnel). Support for commercial development of the river bend grew, and crucial funding came in 1939 which resulted in the initial construction of a network of some 17,000 feet (5,200 m) of walkways, about 20 bridges, and extensive plantings including some of the bald cypress (others are several hundred years old) whose branches stretch up to 10 stories and are visible from street level.
Thank you Wikipedia!
One afternoon we walked to the Tower of the Americas. This is a 750-foot observation tower/restaurant. The tower was designed by San Antonio architect O'Neil Ford and was built as the theme structure of the 1968 World's Fair, HemisFair '68.
The tower was the tallest observation tower in the United States from 1968 until 1996, when the Las Vegas Stratosphere Tower was completed.
It is located in the middle of HemisFair Park and has an observation deck that is accessible by elevator for a fee - about $10. In addition, there is also a lounge and revolving restaurant at the top of the tower that provides panoramic views of the city. It's pretty cold when you go out onto the outer deck of the tower! The wind is pretty strong up there. But you get an awesome view of every angle of San Antonio.
Construction of the tower began on August 9, 1966 and was completed in approximately 18 months, just in time for the opening ceremonies for the fair held on April 6, 1968. The tophouse of the building was constructed at ground level and hoisted to the top of the poured concrete shaft. As the tophouse was being hoisted into place, on October 30, 1967 some of the cables used to hoist the tophouse snapped leaving the tophouse resting on and precariously tilted on the Tower’s shaft. Eventually, oil field pipes were used in lieu of cables to complete the job.
Thank you Mr Google for some of the above information!
A couple of interesting bits just for fun:
Interesting bit #1.
One for the blokes. We saw a stretch Hummer on the street near our hotel. And in the back, a SPA POOL! You wouldn't want to go around corners fast while it's full I guess.
I just did a Google search for Hummers with hot tubs, and came up with this website. It appears the one we saw is the only one in Texas. Texas is a huge state! Check this site out if you want to have a drool! The photo at the top has the limos parked in front of The Alamo.
Interesting bit #2.
On our walk back from the Tower to the Riverwalk, Brad and I took a wrong turn and ended up slightly out of our way. We turned to go back to where we were supposed to be and some strange man started staring at Brad and kind of bowing his head to him. I was aware that the man was holding something in his hand but I was more intrigued by the head bobbing thing so I took no notice of what he was holding. Once we past the strange individual I asked Brad if people often bowed to him in the street. He said he was trying to sell us cocaine, didn't you see what was in the bag he was holding? Um NO! No I didn’t! Colour me naïve! This was only a block away from our hotel. You really don’t need to go far out of your way to encounter some really seedy areas! Scary stuff. I think it was more good luck than good management that we didn’t get mugged!
The best news this week is...Mike went HOME Tuesday!! Yaaaay! Love and best wishes to you Mike, you rock!!
Here's a pic of Mike with his family on the day of his arrival home. Couldn't wipe the smile off his face with sandpaper! Great stuff :)
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...
A message from Sabrina. Please read it and please do what you can to help us.
I don't think it's just patients and parents of patients who embrace the effects & benefits of Myozyme but likely it's those we surround ourselves with as well. It takes just a few minutes for someone to draft a letter and I think the response could have a profound effect on the powers that be who don't see the need for this life saving drug. I would greatly appreciate your consideration. Please let me know of anyone else you guys know who blogs. I also have requests in for AMDA & UPF. Sabrina Friends in the pompe community, As most of you know, New Zealand is currently not on board with funding Myozyme even though more than 45 other countries see the benefit of doing so. There are at least 5 patients in New Zealand currently suffering from this progressive muscle wasting disease. Monique Griffin, a fellow pompe patient, has been asked by Lysosomal Diseases New Zealand to join them in their fighton Tuesday with Pharmac (the Pharmaceutical Management Agency of New Zealand). Whether she is talking directly to Pharmac or being interviewed by media, she is front & center in a major struggle that stands to benefit so many people. Monique will be flying out on Saturday with this huge undertaking and we, as a community, can help. For those of you who know Monique, she is a walking testimonial and a compelling public speaker but lets give her even more ammunition for this very important meeting.
Please take a moment and write a brief story of what Myozyme has meant to you or what is has done for a beloved member of your family. It's best if your story is kept short so that it'll be read. Imagine if Monique waves in her hands hundreds of letters, photos, results and testimonials of patients who suffer from pompe disease who have benefited in some way from receiving Myozyme infusions. There is great power in numbers, please take a moment to give voice to your story for our fellow pompe sufferers in New Zealand.
Please send your story THIS WEEKEND to Monique Griffin at email@example.com.
Thank you in advance for your support! Sabrina Low-DuMond Mom to Zack (16) pompe, Madison (14) unaffected, Kyle (28) unaffected So Cal.
Did yet another week just zip by? I’ll be home before I know it!
I had the pleasure of meeting John Crowley at a tailgate party at Dr Byrne’s house this weekend. As you will see below, John Crowley is a hugely successful man, but when you talk to him, he is first and foremost a Dad with a huge love for his family. As I said, it was truly a pleasure to meet such an inspirational person.
John has 2 children with infantile pompe and an older son, John Jr, who does not have pompe.
In 1998, two of the Crowley's children, Megan and Patrick, were diagnosed with a severe neuromuscular disorder, Pompe disease. In the face of the children's deteriorating health, the family moved to New Jersey to be close to doctors specializing in the disease. Frustrated with the slow pace of research on Pompe disease, Crowley took a position as CEO of Novazyme Pharmaceuticals, a biotechnology research company located in Oklahoma City that was conducting research on a new experimental treatment for the disease.
In 2001, Novazyme was acquired by Genzyme Corporation, then the world's third largest biotechnology company, under Crowley's initiative. Crowley was in charge of Genzyme’s global Pompe program from September 2001 until December 2002. Genzyme’s work eventually bore fruit and in January 2003, Megan and Patrick Crowley received the enzyme replacement therapy for Pompe disease developed by Genzyme. John Crowley credits the experimental trial with saving his children's lives. The acquisition of Novazyme by Genzyme, and Crowley's fight to cure Pompe's Disease, was documented in the Harvard Business School Case Study, Novazyme: A Father's Love.
Crowley went on to become President and CEO of Orexigen Therapeutics in 2003. In January 2005, he was named the President and CEO of Amicus Therapeutics, based in Cranbury, New Jersey. He also serves in the United States Navy Reserve as an intelligence officer. He completed a six-month tour of active duty at the Center for Naval Intelligence in Virginia in 2007. He is currently assigned to a Navy Reserve unit at the United States Special Operations Command.
Crowley was profiled in The Wall Street Journal by Pulitzer Prize-winning journalist Geeta Anand. Anand expanded the profile of Crowley into a book published in 2006, The Cure: How a Father Raised $100 Million – And Bucked the Medical Establishment – In a Quest to Save His Children.
Harrison Ford and Double Feature films optioned the rights to produce a film inspired by Anand’s book and the Crowley family. In April 2009, CBS Films began filming this major motion picture about the Crowley family's quest to save their children's lives. The film, titled Extraordinary Measures was released nationwide on January 22, 2010. Extraordinary Measures stars Brendan Fraser as John Crowley and Keri Russell as Aileen Crowley, and also executive producer Harrison Ford as "Dr. Robert Stonehill" who is a composite character based primarily on Dr. William Canfield and inspired as well by other doctors Crowley worked with. John Crowley has also written a personal memoir entitled Chasing Miracles: The Crowley Family Journey of Strength, Hope and Joy.
For more about this inspirational family see link below:
Before we went to Dr Byrne's place I also went to another tailgate party at Katie and Dean’s sectioned off bit of roadside. Great food, lovely people, some I have met before and some new ones. It’s always interesting to meet new people and find out about where they come from and what they do. Most of them who have heard of New Zealand have heard about how many different terrains there are all in one small country, and the wonderful outdoor lifestyle we have there. I’ve invited them all over. If they all come at the same time our house is going to be PACKED!
I had to include this photo of me with this man, because he is 6’8”! That’s his wee daughter there pulling my hair lol.
I guess since I’m talking tailgate parties, I should mention the score in the big game following. Gators vs Alabama…The Gators got chomped, #3-ranked Alabama beat #12-ranked Florida 38-10 in The Swamp. At least the tailgate was great!
I took the OZs car for a drive this week. It’s funny how you feel like you have this huge flashing neon sign on your forehead saying “look at me, i'm an idiot, I have no idea what I’m doing”!
But, I took deep breaths, stayed on the correct (right…wait… yep the right hand side) side of the road and didn’t crash. I didn’t go out on to the bigger main roads as they are a little scary. But I will work my way up to that.
This week I went to the pet shop and they had an adoption day. Lots of dogs, mainly large ones, plenty of cats and kittens. I just wanted to bring all of the cats and kittens home…
Note to my husband: NO I didn’t!
I saw a great sign on the cages of the black cats which read:
10 Reasons to adopt a black cat
10 You’ll save $$$ on their Halloween costumes
9 You can always find them in the snow
8 Holding a black cat is very slimming
7 Black cats will match any décor
6 A lint brush isn’t required for a black tie affair
5 When you love a black cat, luck is on your side
4 Black cats are like Onyx, a beautiful gem
3 Hey they don’t care what colour you are!
2 Love knows no colour
And the number 1 reason for adopting a black cat is…
...they are the least likely to be adopted.
I couldn’t resist putting this in because I think black cats are awesome. Two of our cats are black, one which we adopted from the local SPCA. Frances is one of the best cats you could ever hope to have. So if you’re thinking of adopting a cat, try a black one!
Critter of the week
The Great Egret
I saw this bird down the road as I was scootering past. At first I just noticed its head as he was in behind the low hedge I always go past. He was sauntering along picking lizards out of the hedge and wasn’t worried one bit when I stopped to take photos. When I went around to the other side of the hedge to photograph him he just carried on with his lizard hunting. Felt kinda sorry for those cute little lizards though…
I had to do a little homework on this one. When I saw this bird I thought it was a White Heron. But when I googled that it wasn’t quite right. It is similar to a white heron, but the egret has black legs, a thinner, bright orange-yellow bill and no head plumes.
The Great Egret is found across much of the world, from southern Canada southward to Argentina, and in Europe, Africa, Asia, and Australia. It's the largest egret in the Old World, and thus has garnered the name Great White Egret. In the New World, however, the white form of the Great Blue Heron is larger. In the United States, the Great Egret used to be called the American Egret but that was hardly appropriate, since its range extends beyond the Americas and indeed farther than other herons.
This Monday I have my 4th infusion, preceeded by a morning of tests for lung function, muscle strength, 6 minute walk test and belly dancing whilst standing on a beam like the gymnasts use…I’m kidding about that last bit!
Monday night my friend Brad from Canada, who also has Pompe, will be arriving. Fortunately the All Blacks caned Canada in the game yesterday so I have a bit of ammo up my sleeve if need be! Sorry about the Warriors, maybe next year! Awesome that they got there though!
Anyway as I said, Brad from Canada (I have to differentiate because the OZ is named Brad as well) is arriving Monday to hang out here for a few days until we go to Texas on Thursday. I've been very fortunate to be funded by the International Pompe Association (IPA) and the Acid Maltase Deficiency Assocation (AMDA) to attend a Pompe conference representing New Zealand next weekend. Our New Zealand Pompe Network is now a fully paid up affilliate member of the IPA. So I will have lots of info in next week's blog about our Texas adventures. Would it be too "cliche" to buy a 10 gallon hat in Texas??
Until next week from Texas...Keep well, keep safe, treat each other with love and kindness...and get yourself a black cat :o)
I had a varied and interesting week this week. A few ups and downs. The main event of course was my 3rd infusion. It went well again, no reactions. The Benadryl given intravenously really makes me tired so I was sleeping through the infusion again, when I was woken from my slumber by a few sneaky people who carted me off to one of the conference rooms for a surprise birthday party! It was so lovely. We had a beautiful chocolate ganache cake. I got to wear the princess crown for the day!
I had a skype call with my son Ben’s class at Opaki School. All of the kids sang happy birthday to me. What a great bunch of kids they are. What a great school that is. And thank you to Mr Pallister for allowing me to have a chat to you and the kids via skype, it’s a lot of fun.
For my birthday dinner the OZ and I went out for tea to a place called 101 Downtown. We were the only ones in the whole restaurant! I had Chilean Sea Bass on mango salsa. It was gorgeous! It was nice to note that they had NZ lamb rack on the menu. I wanted to try something I had never had before so went for the bass. They also had Bison burgers! By the way the lamb rack was $26 for a whole rack, and $20 for a half. Not sure how that compares with prices in NZ but would be interested to know.
More on the food bent…you have to be on your toes here when ordering food, an entrée in NZ is called an appetizer here, and an entrée here is the main meal. Tricky! And the Marmite you get here is NOT like the Marmite you get in NZ!
Jenna and I at my party.
Jenna is a Physio Therapist at Shands Hospital.
You may notice that i'm still "mid-infusion"!
Critter of the week…
Love bugs! I’m going to have to consult with Wikipedia about these since I have never seen them before and I don’t know anything about them. But they are all over the place at the moment and just something a little different for someone from NZ.
The lovebug, Plecia nearctica, is a member of the family of march flies. It is also known as the honeymoon fly, kissingbug or double-headedbug. The adult is a small, flying insect common to parts of Central America and the southeastern United States, especially along the Gulf Coast. During and after mating, adult pairs remain coupled, even in flight, for up to several days.
This species' reputation as a public nuisance is due not to any bite or sting (it is incapable of either), but to its slightly acidic body chemistry. Because airborne Lovebugs can exist in enormous numbers near highways, they die en masse on automobile windshields, hoods, and radiator grills when the vehicles travel at high speeds. If left for more than an hour or two, the remains become dried and extremely difficult to remove. Their body chemistry has a nearly neutral 6.5 pH but may become acidic at 4.25 pH if left on the car for a day. In the past, the acidity of the dead adult body, especially the female's egg masses, often resulted in pits and etches in automotive paint and chrome if not quickly removed. However, advances in automotive paints and protective coatings have reduced this threat significantly. Now the greatest concern is excessive clogging of vehicle radiator air passages with the bodies of the adults, with the reduction of the cooling effect on engines, and the obstruction of windshields when the remains of the adults and egg masses are smeared on the glass.
Well there you go, all you ever wanted to know and more about Lovebugs!
Also this week, Mike, whom I mentioned in last weeks blog, has finally gone back to his home state of New Jersey to continue his rehabilitation before going home to his house. Hopefully he will be HOME in a few weeks time. How awesome! He did travel in style back to New Jersey, he took a Lear jet! Good luck Mike, we will be seeing you soon.
Mike went home all decked out with his Gators stuff! I hope he didn't forget his "murse" LOL.
Another one leaving, although only for a couple of weeks, was Brad the OZ. We managed to ditch him at Orlando airport on Wednesday. He’s left me with the car…I haven’t shifted it out of the car park yet, I’m not sure if I want to either! Katie, who is one of the beautiful people at the University of Florida, was taking Brad to Orlando so I caught a ride to take in the sights. I saw where Mickey Mouse lives over yonder. We went and had a browse around a mall, WOW it was gorgeous. There were fountains and beautiful things everywhere. Since we were there so late in the day for the airport, Katie and I had dinner there at an authentic Italian restaurant, and were served by a Spanish guy LOL. Ah well, the service was great and the food was delicious.
When Katie and I were driving to the mall after going to the airport, she pointed out this sign.
Who knew there was a religious theme park!? Not sure what rides they have, maybe donkey rides? Anyway, I looked it up online and if you are keen to see what it is all about, here is the web address;
Katie says she goes to the Mall at Millenia for her Holy Land Experience! I have to agree, it was Heaven!
We’ve had a couple of good storms this week. They all seem to have a name now. Years ago you just used to have a storm, just a plain old storm. Now they’re all named after someone. This reminds me…when I first came here there was Hurricane Irene. This caused huge laughter among the family back home. Not because they thought it was funny there was a hurricane coming, but because my mother in law's name was Irene. And she really did not like me! So they joked that even though I had come all the way to America, she was still following me around! Scary for me!
When I was in the supermarket earlier today on Road Runner, an elderly lady in a motorised shopping trolley chased me down in an aisle and asked me all about my scooter. She thought it was great and wanted to know where she might get one, and what make and model it was etc. So I wrote it all down for her. I hope she gets one soon as she seemed very excited about the thought of having one. I also nearly flattened some poor guy as he walked out of the pet shop this morning while I was whistling past. In my defense he was walking quite quickly...! MEEP MEEP!
Thank you to everyone back home, those whom I know, and those I don't know personally, for your continued support and for making this time in our lives so much easier to get through. I truly feel thankful each day for everything you have all done for us. Much love to you all. I dont know how I can ever pay you back, but I can and will pay it forward.
I’m still 46 until tomorrow ;o)
Finally I get to be younger than you! Hahaha!
Farewell Mike! Note the snazzy Gator colours there?
On Wednesday we attended a special luncheon for Mike. Mike also has Pompe and he has been in Florida receiving a diaphragmatic pacemaker to help him breathe on his own. This should enable him to get off his ventilator and go back to live with his family in his own home. Mike is from New Jersey. He has only been able to go home to his house twice in over 4 years, and that was just for brief visits of a few hours. The rest of the time he has been hooked up to a ventilator in a palliative care hospital. Mike has a great sense of humour, to have been through what he’s been through and still be laughing, I gotta take my hat off to him! The lunch was a send off for Mike as he heads back to New Jersey to a rehabilitation centre to get his breathing and muscles stronger before he goes home. Bless you Mike, I know you’re going to make it back home soon!
On Thursday afternoon the OZ and I headed out to Paynes Prairie. This park became Florida´s first state preserve in 1971 and is now designated as a National Natural Landmark. Over 20 distinct biological communities provide a rich array of habitats for wildlife and livestock, including alligators, bison, horses and over 270 species of birds.
The park is open until sunset each day. I guess it depends on what time of the day and also what season you go in, as to what you are most likely to see. It is a beautiful place. We saw alligators (ok 1), lots of different beautiful birds including an Eagle, an armadillo just wandering along minding its own business on the side of the track, loads of squirrels and some very large spiders! I HATE spiders! I was looking at an extremely large one on my way past on Road Runner, it was eating something in its web, I think it was an elephant. When I pointed it out to the OZ he acknowledged he had seen it, but he was seeing a different one, and pointed even closer to my face! I hadn’t noticed the one a LOT closer to me! This one was only slightly smaller; its dinner of choice was a wildebeest I think. We saw wild deer with babies, and wild horses too. This is a breed which belongs in this area called the Florida Cracker Horse. These horses were first brought to Florida by the Spanish in the early 1500s. It’s so lovely to see horses in the wild.
The Florida Gators play Tennessee down at “The Swamp” tonight. There have been big RVs rolling into town, cars covered in Gators emblems and flags everywhere. It’s great how people really get into game day over here! I had to buy a Gators T-shirt so I didn’t look like such a foreigner! Now I fit right in until I say something.
Note: Ben Hill Griffin Stadium (popularly known as "The Swamp") is the American football stadium for the University of Florida and the home field of the university's Florida Gators football team. It is located on the university's Gainesville, Florida campus. Attendance for the Gators' home football games regularly exceeds 90,000 persons.
That's A LOT of persons!!
Hidyhi from Florida again. Where did this week go?? WOW!
A mixed bag this week...
Tailgate Party - If you look that term up on Wikipedia you will find this...
"In the United States, a tailgate party is a social event held on and around the open tailgate of a vehicle. Tailgating often involves consuming alcoholic beverages and grilling food. Tailgate parties usually occur in the parking lots at stadiums and arenas, before and occasionally after games and concerts. People attending such a party are said to be tailgating. Many people participate even if their vehicles do not have tailgates. Also, many people don't even go into the game and just go to the tailgate to party. Tailgate parties have spread to the pre-game festivities at sporting events besides football (e.g. basketball, hockey, soccer, and baseball) and is also used at non-sporting events such as weddings and other non-sports-related barbecue gatherings".
I attended my first ever tailgate party yesterday (Saturday). It is indeed exactly what Wikipedia says. I could not imagine local councils in New Zealand ever letting thousands of vehicles of all shapes and sizes congregate on grass verges and in parks, under trees and unload all of the goodies like tents, tables, TVs, BBQs, fake trees for putting your empty beer bottles on (these are to keep flies away by the way. The motto is "Fear the Brew", seemed to work, there were no flies, although maybe there wouldn't have been any in any case, but that isn't the point..), LARGE blow up 'Gators, gazebos, chairs, chilly bins, food, food and more food and of course beverages. ENORMOUS RVs were rolling in one after the other after the other...even a car the shape of an alligator drove past! It had a tail and scales and everything! Everyone was there for the same reason, the Florida Gators. It is a family event too, not just for adults. There were plenty of kids there enjoying frisbee and remote controlled cars and kicking a ball around. It was a great day. First ever tailgate party, and I hope to go to more.
One thing you have to learn in Gainesville is the "Gator Chomp". This is the action you perform at a Florida Gators football game. The Gator Chomp is done by fully extending your arms, one over the other in front of your body with the palms facing toward each other. Then you move your arms apart and together to symbolize an alligator's chomping mouth. This gesture is used by Florida Gators fans to intimidate opposing players and fans. I haven't been to a game yet but I hope to. In case I do, I have been practising my "chomping". CHOMP CHOMP!
There are only 7 Gators games played here in Gainesville each year. 2 have been played, but this weekend coming is the first BIG game. It will be against Tennessee. More on that in a later blog...
On the way to the tailgate yesterday we went past a lake, a lake very close to the road's edge. When I say "close", I mean ONLY a few metres. This lake is in a very built up area, not way out in the wopwops. Although I guess the houses were built in the wopwops... Anyway, it's no wonder these things end up in some peoples swimming pools! Pretty awesome to see them out in the wild when you're just driving along an average neighbourhood street. Not something you would ever see in New Zealand...well hopefully not! Henley Lake would never be the same!
Today I went for a tootle on "Road Runner", as my scooter is now affectionately called, and it was 38c! Whew! I went for a swim the other day, in a POOL, NOT a lake! But stupidly I picked the coolest day of the summer and the water was a little chilly. If it is this hot tomorrow I will don my water wings and take the plunge again.
Lastly, but certainly not leastly (is that a word?). This week my twin brother Bruce was also diagnosed with Pompe Disease. He's less affected than I am and in fact would probably never have gotten tested if it wasn't for the fact that I have been diagnosed. So this is a good thing for him as it means that he can HOPEFULLY get treatment before symptoms really get a hold on him. When I found out what I had I was relieved to find out. When I found out Bruce had the same thing, I was totally gutted...Now i've got even more reason to get Pharmac to do the right thing! No one is allowed to be mean to my brother!