OUTSTANDING SOCIAL NETWORK PARTICIPANTS & SM WRISTBANDS
A special thank you goes out to all of our members for being a part of our awareness family; not just by supporting each other, but also in time it will help to increase awareness of Syringomyelia. We would like to acknowledge our members, keep the blogs going, and ensure that our members maintain a very supportive
environment. In doing so we would like to show our appreciation, while helping to increase awareness of our cause. By wearing the wristbands we had made to help fund our Syringomyelia Awareness projects:(www.syringomyelia.ca) & (www.smawareness.ca) , it will help to keep the conversations going with regards to sm, increase awareness of SM while helping us in building & maintaining our support system.
Therefore, we will be selecting one member per month from the nominations received from our members' and will send them 2 free wristbands for their outstanding participation on the social network.
About me: I am married and have 2 great kids. They are happy and healthy. I am grateful they are in HS and College and I'm not toting them on my hip any more! It's getting harder and harder to tote myself around these days. Trying to make the best of a bad situation. I've been to see the neurosurgeon at TCI. At this point I'm in a holding pattern until my lumbar puncture . Depending on the findings, I may be back for another appointment. The story continues! 
This honour will be given to a social network member who has been very supportive through the participation of blogging, commenting, and making that extra effort in helping others on our social network to become comfortable with our site and to encourage others to come forward and speak their mind as well. Is it our goal to be there for each other, get the foundation up and going and maintain the availability of our awareness site for our members? Everyone has done a great job thus far and we are grateful for our community. We do understand that some members are not able to participate as much as other members and we don't want to discourage anyone. If you're not able to participate in the blogs etc, that's understandable. Just by being a member it's making a difference and we appreciate having you here with us. The more members the more information and support. There are other ways to help us as well, and if you wish to discuss your ideas with us we would be most appreciative.
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August 2010
Outstanding Social Network
(www.smawareness.ca)
Participant
Dale Oster (SM)
Me, really? Well thanks for the honour. I have been eyeing those bands for awhile, LOL. About me, I continue'd to tell my GP in late 2007 and early 2008 that something was wrong. Usual advice and take asprin ect. So in jan 08 my Dr set up an MRI. Had to wait till june for it when I was diagnosed with SM. Then had to wait till Oct for surgury and my symptoms and pain continued to get worse. After the surgury and up to date the pain has stayed about the same. Being single I continue to struggle with house hold chores and such so lately I have been considering a roommate to help out with that. Hmmm how will that work out ... Still not able to work and coming to realize that I may never, yuck. Hard to keep busy as anything I do can flare up the pain so few hobbies although I have recently picked up a 1972 Honda mini trail motorcycle that I'm restoring to its former glory. Finding that I enjoy it and can work on it without to much trouble. Thank you for the special recognition.
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July 2010
Outstanding Social Network
(www.smawareness.ca)
Participant
Joann Saggese (SM/ACM)
Thank you Joann for your continued support and for being apartment of family.
Members' comments to Joann:
- Comment by Lisa Lafreniere (SM) on July 25, 2010 at 10:54am. Congrats JoAnn, you deserve this!!! You made me feel welcomed here( just like one of the family). You offer great advice & words of wisedom and you always know just what to said ( to pick up my spirits when I'm having a blue day).
Stay strong, Lisa
- Comment by Liz Darnell (SM,TM) on July 26, 2010 at 8:32am. So deserved...ya know, I think you were one of the first people to answer some of my questions and make me feel so welcome...Hugs to you!
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June 2010
Outstanding Social Network (www.smawareness.ca)
Participant
Tina Hoback (ACM & SM)
Tina's About me page: i have 3 boys....i LOVE god....friends and family. Diagnosed in Feb 2009, a friend linked her to our social network. We are happy to have her as a member with us, and glad she join our family in support of each other.
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May 2010
Outstanding Social Network (www.smawareness.ca)
Participant
Joe Carroll (SM)
Joe's response to the news: Carion SM. I am honored, and quite shocked at the same time. You have made my weekend, my month, my year. I would like to give thanks to our Lord Jesus Christ for surrounding me with Angels, without His blessings, I would have nothing. My wife, Kris & my kids and their wives for the continuing prayers and support. Of course, to all of you, whom have welcomed me and let me complain, throw fits, and say silly stuff. I pray that fewer and fewer people are afflicted with this and that medicine makes major leaps & bounds to help us. Thank you and God Bless You!! Joe's About me page: I am 53. Married 26 years, 3 boys, 2 grandchildren. Play a large synthesizer set-up and recording studio. Love to travel and eat fine dining. Definitely a family man. recently Joe and his family welcome a new granddaughter. Congrats from all of us.
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April 2010
Outstanding Social Network (www.smawareness.ca)
Participant
Liz Darnell (sm) (tm)
Woke up one morning in the summer of 2008 feeling numb and tingly from the waist down and in some tremendous pain. Went to the medical center here two days later and was given pain meds and xrayed in the L Spine and SI joints. Was then sent to a local doctor here who immediately set me up with a neurologist out of town and MRI's. It was then I was diagnosed with Transverse Myelitis, SM and tested positive for O bands associated with MS after many tests and lumbar puncture. Did IV steroids once, and steroid treatment twice and have been on pain meds since then. Have only had about two or 3 good weeks out of all this time. My neuro has thrown his hands up, sent me to pain management where I am now on 90 mgs Avinza, 1800 mgs neurontin, and hydrocodone about 4 times a day. He also referred me to Johns Hopkins. This is where I am and I struggle each day to get to work and take care of 2 teenagers. Although I do not know you all individually...you are my friends and I love you.
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Syringomyelia Awareness Wristband
Help raise awareness by purchasing and wearing your Syringomyelia wristband. A great conversation piece in telling others about SM, helping to build a strong foundation of support from the ground up and bringing awareness to this rare disabling neurological condition. This custom design RED with white accented writing and Canadian Maple Leaf silicone debossed wristband (202mm x 12mm x 2mm) by all of us living with Syringomyelia displays our cause and website address on the outside. This is a great way to show your support, while helping to increase awareness. Profit from the wristbands will be used to pay the cost for our support systems and help to increase awareness of Syringomyelia. Your support is greatly appreciated in order for us to help make a difference.
If you or a love one was diagnosed with Syringomyelia or ACM join us at our Syringomyelia Awareness Social Network (www.smawareness.ca) where we have over 300 members who are living with Syringomyelia, ACM & love ones, a great support system where our members support each other around the world. Our members are from Canada, USA, United Kingdom, Denmark, New Zealand, India, Greece, Australia, and we are growing each day. We hope those living with Syringomyelia and related conditions find a home with us and help support each other. God bless you all and keep praying for us.
March 2010 Outstanding Social Network (www.smawareness.ca) Diagnosed with Syringomyelia in July 2008, a nurse working in the community with a great family and a strong faith. Ms. DiFonzo has posted 7 blogs, a very frequent user of our social network in responding to others, and she plays a very supportive role with our members. Her blogs includes her struggles with Syringomyelia such as, Humbled, Feeling better, I want a vacation from pain, Met with Dr. Tator, What do you do and think about in the long nights?, Stem Cell Research, and sweats. She actively shares her experience and knowledge with our members. We are happy to have her as our December 2009 Outstanding Social Network Participant. Congratulations Ms. DiFonzo and Thank you!
Outstanding Social Network (www.smawareness.ca)
Participant
Nicole McFadden (SM)
About me: I am 45, mother of 3 children; Isabelle (16), Adam (21) & Chrystelle (24) who made me a grandmother; Aryelle (5) & Serena (1). I have been suffering with many symptoms since 2007. After falling in 2008, injured my neck. That's when they found I had disk denerative disorder, pinched nerves at C-6. In January 2010, they found a syrinx in my MRI. It's the day that I found this site. It has been a Blessing to be part of this wonderful group!
Ms. McFadden has been a great help in supporting others, getting the support of others. Her shining participation has helped to make our community a home for all. We are glad she has found our sites, and look forward to her continued support to others as well as herself receiving support from our members.
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FEBRUARY 2010
Outstanding Social Network (www.smawareness.ca)
Participant
Jody (SM)
Jody's about me: This is my first time joining something like this. My "struggle" with my health hit hard on Christmas Eve 2008, and I've been trying to figure out what the problem is eversince. My symptoms are multiple and continue to just get worse, the latest being intense pain and muscle spasticity. I have been significantly affected by this and just want to find some answers so that I can begin treatment and work towards getting better.
Jody posted 26 blogs and is one of our frequent bloggers. We are blessed to have her share her story/ journey with us and help in supporting each other.
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JANUARY 2010
Outstanding Social Network (www.smawareness.ca)
Participant
Mr. Rick Ferris (SM)
Rick's "about me" from our Social Network: Spinal Cord injury in 1980 left me ambulatory but with other problems...first signs of SM were around 2006-2007...diagnosed in 2008...currently on disability from work as a result of my SM.
Ricks blogs includes: New guy in town", "Thanks to all", "Confused", "Confused...the sequel,lol", "Replies to the sequel", "Update to the sequel", "As promised...a weight loss solution", an afterthough about weight control", "Merry Christmas", "Chat room", "Appointment set", Appointment results". Mr. Ferris is one of our regular bloggers who is very supportive to our members in sharing his experiences, asking questions, and responding to blogs posted by others. We are thankful for his support and happy to have him as our January 2010 Outstanding Social Network Participant.
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We would like to introduce our first outstanding participant:
DECEMBER 2009
Participant
Ms. Sheila DiFonzo