myotonicdystrophy-ourfamilysjourney.blogspot.com

Myotonic Dystrophy - Our Family's Journey

This is the story of our family's journey from the first diagnosis of Myotonic Dystrophy, onward. As with any journey there are the ups and downs and so it was and will be with us, too. My plan is to keep a positive spin on dealing with this life long journey. I'd love to have you join us on our journey. Maybe you can learn a little from us. We can certainly learn from others.

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Myotonic Dystrophy - Our Family's Journey | myotonicdystrophy-ourfamilysjourney.blogspot.com Reviews

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This is the story of our family's journey from the first diagnosis of Myotonic Dystrophy, onward. As with any journey there are the ups and downs and so it was and will be with us, too. My plan is to keep a positive spin on dealing with this life long journey. I'd love to have you join us on our journey. Maybe you can learn a little from us. We can certainly learn from others.

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posted by,kathy,4 comments,email this,blogthis,share to twitter,share to facebook,share to pinterest,labels muscular dystrophy,myotonic dystrophy,steinerts disease,a quick update,myotonic muscular dystrophy,new treatments,blog,9 comments,labels death,love

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Myotonic Dystrophy - Our Family's Journey | myotonicdystrophy-ourfamilysjourney.blogspot.com Reviews

https://myotonicdystrophy-ourfamilysjourney.blogspot.com

This is the story of our family's journey from the first diagnosis of Myotonic Dystrophy, onward. As with any journey there are the ups and downs and so it was and will be with us, too. My plan is to keep a positive spin on dealing with this life long journey. I'd love to have you join us on our journey. Maybe you can learn a little from us. We can certainly learn from others.

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myotonicdystrophy-ourfamilysjourney.blogspot.com

1

Myotonic Dystrophy - Our Family's Journey: January 2013

http://myotonicdystrophy-ourfamilysjourney.blogspot.com/2013_01_01_archive.html

Myotonic Dystrophy - Our Family's Journey. Saturday, January 26, 2013. Update - January 26, 2013. Together, we're stronger! I guess I spoke a little too soon with my previous blog update. Brian, the eldest boy, is now in the hospital. The blood results have revealed that he has the flu, which has led to excess fluid in his lungs. Having Myotonic Dystrophy, he doesn't have the muscle tone to cough hard enough to dislodge the mucous from his lungs. We're thankful that so far, it's just been the one child a...

2

Myotonic Dystrophy - Our Family's Journey: Aiden and Brian's Annual trip to the Stan Cassidy Center for Rehabilitation

http://myotonicdystrophy-ourfamilysjourney.blogspot.com/2015/04/aiden-and-brians-annual-trip-to-stan.html

Myotonic Dystrophy - Our Family's Journey. Wednesday, April 1, 2015. Aiden and Brian's Annual trip to the Stan Cassidy Center for Rehabilitation. The boys made their annual trip to the Stan Cassidy Center for Rehabilitation, in Frederiction this week. For anyone not familiar with this Center here is a link to their site. SCCR. We are very fortunate to have these services available for us, here in Canada, at no cost to the boys and their family. Aiden showing off his ball throwing skills. After getting bo...

3

Myotonic Dystrophy - Our Family's Journey: February 2013

http://myotonicdystrophy-ourfamilysjourney.blogspot.com/2013_02_01_archive.html

Myotonic Dystrophy - Our Family's Journey. Saturday, February 23, 2013. Update - February 22, 2103. Together We Are Stronger. Our family has been living with Myotonic Dystrophy since our diagnosis in early 2004. the following is the most recent update. The rest of our families took turns taking care of Aiden at home, so they could be there. Aiden had an appointment with the specialist for his scoliosis. For this we had to travel to another city hospital. Please click the link. Links to this post.

4

Myotonic Dystrophy - Our Family's Journey: The boys yearly medical team visit - March 13, 2013

http://myotonicdystrophy-ourfamilysjourney.blogspot.com/2013/03/the-boys-yearly-medical-visit-march.html

Myotonic Dystrophy - Our Family's Journey. Thursday, March 14, 2013. The boys yearly medical team visit - March 13, 2013. Our family has been living with Myotonic Dystrophy since our diagnosis in early 2004. The following is the most recent update. Aiden, waiting for one of the therapists to come to see him. It is a very psychologically exhausting day for the whole family, with each boy seeing so many individual professionals. For more information on Myotonic Dystrophy please click here. Thanks for your ...

5

Myotonic Dystrophy - Our Family's Journey: Continued Assessments for Stan Cassidy Rehabilitation Center

http://myotonicdystrophy-ourfamilysjourney.blogspot.com/2013/05/continued-assessments-for-stan-cassidy.html

Myotonic Dystrophy - Our Family's Journey. Wednesday, May 1, 2013. Continued Assessments for Stan Cassidy Rehabilitation Center. Myotonic Dystrophy - Our Family's Journey. The one day the boys were seen at the Stan Cassidy Center, in March was not enough time to complete the assessments the team needed to help the boys go forward with this condition to achieve a positive outcome. We look forward to several busy weeks. For more information on Myotonic Dystrophy please follow this link:. May 3, 2013 at 6:3...

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OTHER SITES

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Myotonia Congenita

The Myotonia Congenita Project. Is hosted by Bravenet - it is only accessible through this website in order to maintain privacy. Once you are at the site, you can add the page to your favorites for quicker access. There is also a Facebook page for people with non-dystrophic myotonias which includes myotonia congenita as well as the sodium ion channel myotonias like paramytonia congenita, hyperkalemic periodic paralysis, and others. Myotonias - Non-Dystrophic Facebook Group. Word Document - English. Put f...

myotoniacongenita.org

Myotonia Congenita

The Myotonia Congenita Project. Is hosted by Bravenet - it is only accessible through this website in order to maintain privacy. Once you are at the site, you can add the page to your favorites for quicker access. There is also a Facebook page for people with non-dystrophic myotonias which includes myotonia congenita as well as the sodium ion channel myotonias like paramytonia congenita, hyperkalemic periodic paralysis, and others. Myotonias - Non-Dystrophic Facebook Group. Word Document - English. Put f...

myotonic.nwcreate.com

Myotonic Research

Classification and external resources. DM) is a chronic. Slowly progressing, highly variable inherited multisystemic disease. That can manifest at any age from birth to old age. It is characterized by wasting of the muscles (muscular dystrophy), posterior subcapsular iridescent cataracts. Opacity of the lens of the eyes), heart conduction defects, endocrine. There are two classifications of DM, each having different associated symptoms. Differences between DM1 and DM2. Differences between DM1 and DM2.

myotonic.org

Myotonic Dystrophy Foundation | Care & A Cure

Skip to main content. How DM Affects Your Body. DM As a Family Disease. Family Planning with DM. Working with Your Doctor. 2018 MDF Annual Conference. Study and Trial Resource Center. Key DM Research Discoveries. Grant Opportunities and Awards. DM Research Newsletter Archive. How DM Affects Your Body. DM As a Family Disease. Family Planning with DM. Working with Your Doctor. 2018 MDF Annual Conference. Study and Trial Resource Center. Key DM Research Discoveries. Grant Opportunities and Awards. Join the ...

myotonicdystrophy-ourfamilysjourney.blogspot.com

Myotonic Dystrophy - Our Family's Journey

Myotonic Dystrophy - Our Family's Journey. Wednesday, April 1, 2015. Aiden and Brian's Annual trip to the Stan Cassidy Center for Rehabilitation. The boys made their annual trip to the Stan Cassidy Center for Rehabilitation, in Frederiction this week. For anyone not familiar with this Center here is a link to their site. SCCR. We are very fortunate to have these services available for us, here in Canada, at no cost to the boys and their family. Aiden showing off his ball throwing skills. After getting bo...

myotonicdystrophyblog.blogspot.com

Myotonic dystrophy blog

This blog is for anyone who has in interest in Myotonic dystrophy to share some of their stories. Thursday, 30 December 2010. Decided to create a Myotonic dystrophy blog. Since starting to blog about my PGD, I have become aware of a whole blogging community, that I didn’t even know existed. I have also discovered that many people with medical conditions are using blogs for a variety of reasons:. To raise awareness of their condition. To find emotional support from people in similar situations. Instead of...

myotonicdystrophysupportgroup.org

Home - Myotonic Dystrophy Support Group

National Office (Open Tue-Thu 09:00 13:00):. What is Myotonic Dystrophy. Variations in Myotonic Dystrophy. How is Myotonic Dystrophy inherited? How Myotonic Dystrophy can affect your health. Myotonic Dystrophy type 2 (DM2). What causes Myotonic Dystrophy? Myotonic Dystrophy Type 1. Myotonic Dystrophy Type 2. Myotonic Dystrophy and the Brain. Myotonic Dystrophy and the Eye. UK DM Patient Registry. UK DM Patient Registry. We welcome new members and new ideas. Keep up to date with research in this field.

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