I was reading through my GSDnet emails when I came across an email from David Hamlin. In his email David is sharing the progress of his son Eric with Myozyme and a whole lot of exercise. He posted some videos on the United Pompe Foundation web site. I checked it out and what I saw had me nearly in tears.
Awesome. That’s the word I’d use to describe David, Eric and the rest of the Hamlin family. It was through their collective effort and of course the people at Genzyme who brought us Myozyme that Eric is doing as well as he is right now.
Eric hasn’t been able to walk since 2001. He started with Enzyme Replacment Therapy April 2004. 11 months after progress was more evident. Now, Eric is taking his first steps with a walker. That rocks!!!
Pompe has slowly ravaged the bodies of people unlucky enough to get afflicted with it. Myozyme works but it does take time. This is evident with Eric’s case. It took awhile before significant progress was made. It took years to destroy the muscles, it will take years as well to repair it.
I guess the key to all of this is managing expectations. I understand that Myozyme is not a miracle drug. I understand that each patient will differ in the progress he/she makes. I also understand that it will take patience, hardwork and determination. I should learn a thing or two from Eric.
Go watch the videos here.
Life is filled with “Little Miracles”. Things that happen unexpectedly but amaze you. They aren’t big or earth shattering. When you tell other people about them, it may not seem like a big deal to others but for you they are. Well, one such thing happened to me today.
Since I started my Myozyme infusions, I’ve tried to manage my expectations. I know Myozyme has done good for some patients but it’s still more or less a case to case basis. It affects people differently. Some good, some less than ideal. So I’ve already told myself not to expect much. I’m not going to suddenly get up from my wheelchair and start dancing. No, nothing like that. In fact I’ve already accepted the fact that I may never walk again. My hope was to merely get off my breathing machine, even if it’s only during the day time. Lessen my dependence on my Bi-Pap machine. That would be fantastic.
I took my first steps towards that goal today. I consider today an exceptional day. I was feeling good and strong. I woke up without having a lot of coughing. My lungs seemed clear. I wasn’t feeling sluggish. I went about my morning routine. Stretching, assisted biking exercises and then onto my morning meal. I had oatmeal today with half a mango. I had some coffee with milk. Regular stuff.
I usually go to the bathroom afterwards to do my business prior to taking a shower. Now whenever I go to the bathroom, I don’t have my Bi-Pap machine with me but my aide and I developed a technique already to assist my breathing. Basically, he makes a fist and pushes it against my stomach in a pumping motion. This helps pump air in and out of my lungs.
After doing my business, I was transfered to the shower. I told my aide to stop pushing first. I wanted to try and see if I could breathe on my own. I tried it and felt good doing so. Seconds turned to a minute and a minute eventually turned to eight minutes. I was breathing by myself. Although not like a normal person. I couldn’t talk much, I was concentrating hard on my breathing. Towards the end I was desperately gulping in air. I managed to complete my shower though. I was transfered to my room without being assisted with my breathing. By the time I got to my bed and the Bi-Pap was placed on my nose, I was gasping and really thankful I’m breathing with assitance again.
I felt a deep sense of joy. I did it. 8 minutes on my own. Something I have been unable to do so in years. One thought kept me going while trying this exercise. That was the though of telling my parents that I was able to do this. I wanted to give them some good news. Something to show them that the past year and two months weren’t for naught. I’m showing some signs of improvement. The biggest of which is simply the fact that my condition has not gotten significantly worse. It’s remained the same if not slightly better. This is proof enough.
I called up my mom and dad to share the news with them. Both of them were happy.
I was able to repeat it that afternoon. But it was a little easier when I did it this time since I was on my wheelchair and I had a pillow on my lap I could push my stomach against. I breathed on my own for 15 mins, while getting my hair cut. I was exhausted after.
Little miracles. Nothing big for other people but certainly a miracle for me. It was definitely a good day.
I was browsing through Digg.com today. I was going through the videos section when I chanced upon a link to a google video titled “Can”. The title of the story on Digg.com read “Strongest Dad in the World!!! Absolutely amazing! Must See!!”. Something inside me made my finger click on the link.
Amazing! That’s all I can say about the video and the story of Team Hoyt.
There are stories that inspire you. Stories that truly touch something deep in your heart. Stories that make you think and say to yourself that the human spirit is such a wonderful thing. It’s capable of climbing insurmountable obstacles. Rick and Dick Hoyt’s story is one of those.
Rick was born with a severe disability. He has cerebral palsy and is a spastic quadriplegic. He also can’t talk. He uses a special computer to communicate with people.
Dick is a loving father commited to making sure that his son Rick, lives the best life he can. When doctors told Dick and his wife to place Rick in an institution because he wouldn’t be able to do anything when he grew up, they said no. They brought Rick home and raised him like any normal child. The same way they did for their two other sons.
In 1977 Rick told his father that he wanted to participate in a 5 mile benefit race for an injured lacrosse player who was paralyzed in an accident. Dick who was hardly a long distance runner agreed to push Rick in the race. They finished second to last but that didn’t matter. Later that evening Rick would tell his dad something that would change their lives forever. Rick said “he just didn’t feel handicapped when we were competing.”.
For more than 25 years now, father and son have been competing in various marathons, triathlons and other gruelling races to spread their message across, “Yes You Can”.
This story struck me because in some way I can relate to it. Like Rick I also managed to finish school despite the odds. I’ve gone on to lead a productive life. While I’m far from being the athlete that they are nor am I the ambassador for people with disabilities such as they are, I’m inspired to do what I can. Maybe one day I can do as much as they can. I promise to give it a go.
Like Dick, I also have a loving and caring father. That goes the same for the rest of my family. While my dad didn’t carry me, push me or pull me in gruelling races, he did push, pull and carry me through life. His sacrifices, hard work, perseverance and never-give-up attitude made me who I am today. For that I am eternally grateful.
This blog entry is dedicated to Team Hoyt and all the families out there who continue to battle through life dealing with disabilities. Their strength and perseverance give me hope and inspiration to carry on. Their stories fuel my motivation to turn my life hopefully into a story like theirs.
Watch the video “Can” either on Google Video or You Tube or read about them in this CNN Article.
Visit the Team Hoyt Website as well and read about their fantastic story.
I got this from Bernadette’s Blog it’s a written by an anonymous soldier during the first World War.
Here is goes..
I asked God for strength, that i might achieve,
I was made weak, that I might learn to humbly obey.
I asked for health, that I might do greater things,
I was given infirmity, that I might do better better things…
I asked for riches, that I might be happy,
I was given poverty, that I might be wise…
I asked for power, that I might have the praise of men,
I was given weakness, taht I might feel the need for God…
I asked for all things, that I might enjoy life,
I was given life, that I might enjoy all things…
I got nothing that I hoped for—but everything that I had hoped for,
Almost despite myfelt, my unspoken prayers were answered.
I am, among all men, most richly blessed!
I loved the prayer simply because it echoes most of my thoughts about my life. It rings true. God made me weak so that I may learn to be humble. I was given Pompe’s disease that I may go on to achieve things that I would not have if I was normal. I was given weakness so that I may learn to turn to God and know he’s beside me. I got nothing that I hoped for and yet everything that I needed and more. I’m truly blessed.
That’s not just lip service. I truly feel that my life is blessed. So far I’ve been lucky. A loving family, friends, education, some comfort in life. God has truly blessed me.
Now this Soldier’s Prayer will now also be a Fighter’s Prayer.
I want to wish everyone a Happy Easter. This is a day of renewal. The day that Jesus Christ rose from the dead to fulfill a promise. To complete our redemption from sins. He died for us and now he rises for us.
This Easter is a special one for me. I got to spend time with my family, almost all of them including my aunt and uncle from California. What really makes it special is because this is my first Easter on Myozyme.
The treatment has given me a renewed sense of hope. A rebirth of sorts. As much I was hopeful before I am moreso now. It’s with great happiness that I now look forward to the days ahead. With Myozyme I am now more optimistic that my quality of life will improve. I hope it does so.
A friend sent me this message via SMS. I’d like to share it with you because it’s a great one.
Today is God’s way of saying, “one more time..!” live life, make a difference, touch one heart, encourage one mind and inspire one soul. A blessed, happy & meaningful EASTER to you n your family! Ü
I’m starting a new thing here at Fight Pompe. Since launching the Fight Pompe Store several months ago, I’ve sold several shirts already. Many thanks to all those who bought shirts. I sincerely appreciate it.
In order to create more awareness and just to see where Fight Pompe shirts have been I’m making a call to those who’ve bought them to send me pics of you or someone wearing the shirts with the general location of where the pic was taken. With your permission I’d like to post them here just so people can see where the Fight Pompe campaign has been.
As a firm believer in leading by example I’ll go first. Below is a picture of me wearing a Fight Pompe T-shirt inside the hospital room during my 9th infusion. Pardon the picture, I forgot the digital camera at home and had to make do with the built-in camera of my mobile phone.
Man! I gotta put on some weight!!!! I look so thin in the picture… But trust me, I look better now than I was a few months ago. Still, I got a long way to go…
So c’mon send me yours. You can email it at juanbkm at gmail dot com.
