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SunandMarius
Приєднався 22 жов 2010
My life....on wheels.
Відео
Christ Alone
Переглядів 1611 років тому
Jordan singing at our church's last baptism. My favorite song.
The Will To Survive
Переглядів 55513 років тому
This is a video I made of my friend, Eric Benjamin Gordon. He is performing a song he wrote in memoriam of those who perished on 9/11. We had travelled to the site originally called Ground Zero so he may perform. He also played 2 other songs that I did not record. He is an amazingly talented man with a beautiful spirit and I am stoked that he is one of my dear friends. If you would like to hear...
Being Blind
Переглядів 91413 років тому
A few people on here have questioned if I am really blind so I decided to make a video about my blindness. If this doesn't convince people, I don't know what will! So I was born with a congenital disorder called colobomas. Mine are rather severe so I have limited vision. I don't let that stop me though! My blindness, we think, is unrelated to the nemaline myopathy but it may have a connection; ...
A Song About the Saints
Переглядів 5013 років тому
My art teachers singing a song to us. We were studying Medieval Christian art in the RISD Museum, Providence RI. So my teachers thought it would be great to sing this lil song to help explain what a saint is.
My swallowing problem
Переглядів 2,2 тис.13 років тому
Here is a video I made for my speech therapist so she can see what eating a meal is like for me. I was able to drink a sip of water really easily which is usually not the case. I eat pureed food because nemaline myopathy makes it difficult to swallow due to weak muscles. Also we hope that the pureed diet will help with weight loss and nutritional balance. Any questions, just post a comment.
Early Morning Blizzard
Переглядів 4213 років тому
It's January 27, 2011 and a blizzard has been hitting us since midday yesterday. It seems like this Nor'easter is the millionth one to plow into us. So while taking my dog out to relieve himself, I thought I would pick up the video camera and catch some snow coming down. Mind you we already have 2 feet of snow on the ground (hard packed by now) and by the end of the storm, we'll have another fo...
Using my CoughAssist Machine
Переглядів 9 тис.13 років тому
Here is the video of me using my CoughAssist Machine. It helps me by clearing secretions from my lungs by suctioning out the fluid when I exhale. I use this because I have a weak cough and I aspirate fluids and food on a regular basis. I have a congenital myopathy, a form of muscular dystrophy.
Skiing with my best friend
Переглядів 12513 років тому
I'm skiing down the mountain to meet my best friend halfway down the trail. Love to go skiing with her at NEHSA (New England Handicapped Ski Association). Our instructors are the best!
Skiing South Peak
Переглядів 24713 років тому
Starting down our fav trail on South Peak at Mt. Sunapee, Newbury, NH on Valentine's Day 2010.
Skiing a Mini Halfpipe
Переглядів 34013 років тому
My ski instructor and I going through the Calypso beginner's halfpipe at Mt. Sunapee, Newbury NH.
Ski Lift Unload
Переглядів 37513 років тому
Here I am getting off the ski lift at Mt. Sunapee in Newbury NH. I participate in adaptive skiing with NEHSA (New England Handicapped Ski Association). They are the greatest, most dedicated group of people you'll meet!
Vlog 3-15-10
Переглядів 4013 років тому
I talk about the first flood to hit Rhode Island in March 2010.
You’re a strong spirit for having the courage to post this. Keep doing you! & have some extra motivation! To facilitate it. ✌️
thank you for your sharing,,i also have swallowing problem,,im very picky when it comes to food not to choke
Hi Dawn! Thanks for posting a peak into mealtime at your house.
You are amazing and anyone that would question you isn't worth anything!
@SunandMarius Thank you Dawn, as always. You're not so bad yourself!
@SymphonyBrahms Thank you so much, Jim.
It's a great performance. Eric is a very talented songwriter, musician and singer. Thanks for posting it. Good job Eric!
I'm really Glad you made this video because my son has colobamas he is legally blind he has one full colobama in one eye and a partial coloboma in the other eye. His good eye is only 20/300 so his vision is quit poor he just got his monocular a month ago and its a great help. your video helps me as a mom see things that might help him thanks so much for making your video.
I myself sometimes have stomach acid refluc "upchucking" sometimes when eating.