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Switch to Forum Live View Anyone Else Dealing with Myotonic Dystrophy?
4 years ago  ::  Jul 23, 2010 - 11:23PM #1
Redbaron
Posts: 311

Hi there.  Thanks for taking the time to read.


My wife has a condition known as myotonic dystrophy, a genetically inherited form of muscular dystrophy.  For the past year and a half, she's been living in a medical facility, fully concious and aware, but on a ventilator and with a feeding tube (she's no longer able to swallow, and cannot breathe adequately on her own.)  She'll be using both of those for the rest of her life, and it is not likely she'll ever be able to live outside a medical facility.


 


Anyone else have a similar situation?  How do you deal with it?  any suggestions?

You are a unique, special individual, just like everyone else.
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4 years ago  ::  Jul 26, 2010 - 6:21PM #2
MDFDadCalif
Posts: 2

Have you reached out to the Myotonic Dystrophy Foundation?  They are a great source of Support and Education for Myotonic Dystrophy families internationally.  They are based near Sacramento, California USA.   


They can be reached via phone 866-968-6642 or 916-788-2626 or email: info@myotonic.org


Their Website:  www.myotonic.org


Their Community Page:  www.myotonic.org/community


God Bless!

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4 years ago  ::  Jul 27, 2010 - 4:27PM #3
Redbaron
Posts: 311

MDFDadCalif,


Thanks for the information and the web link.  There's a lot on the site, which will be helpful.  I appreciate the link!


Peace, RB

You are a unique, special individual, just like everyone else.
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4 years ago  ::  Jul 29, 2010 - 12:57PM #4
MDFDadCalif
Posts: 2

RB,


We have a 5 yr. old daughter, Kayla, born with Congenital Mytonic Dystrophy.   She spent the first 5 months in the ICU and came home on a ventilator and feeding tube.  She just turned 5 yesterday 7/28, and she is a TRUE MIRACLE to have survived. 


Also, we were acutally invited to be on TV for the 2009 Jerry Lewis MDA Telethonin Las Vegas last Sept. 2009 with our daughter, Kayla. 


See Kayla's story by wife Lisa who runs MDF - 3 min video: 


www.youtube.com/watch?v=KvfumSBsdC0&feat...


My 3 min video:


www.youtube.com/watch?v=HcHpTX3_b_s&feat...


As a result of our daughters experience, my wife became a founding member with others to form the Myotonic Dystrophy Foundation in 2007 , a cental site to provide all the latest up to date info and support for families of all ages dealing with MD.  Lisa is the Managing partner of MDF here in Roseville, CA. (outside Sacramento, CA).


Also, there is a large MDA Support Group based in Los Angeles, CA that has weekly online chat and support group meetings and also a large doctor and family conference (every yeer at the end of September) in the LA area.  It's typically on a Saturday and Sunday all day conference in the LA area run a lady named Alice Gunderson.  Feel free to reach out to Alice for support at MDAASGChat@aol.com.   She is a wonderful lady. 


Best wishes...God Bless!

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4 years ago  ::  Aug 13, 2010 - 7:43PM #5
Redbaron
Posts: 311

MDFDad,


Thanks again for the website, and thanks for sharing the videos.  I signed up at the website and just got a bundle of information that I hope to start looking through over the weekend.  Looks like it will be helpful in understanding what's going on.  Thanks again


Peace, RB

You are a unique, special individual, just like everyone else.
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