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Do I really want to know

CatDave
  • By CatDave · New reply yesterday at 9:31 pm
  • Journal · 1 reply
  • Yesterday one of our clients died while on vacation with his family. Definitely not expected and it was a shock. We are helping the family now and it is a sad time. This whole thing got me wondering if ...

Boyfriend with Muscular Dystrophy- HELP

Coconutgirl
  • By Coconutgirl · New reply yesterday at 9:17 pm
  • Discussion in Family and friends · 4 replies
  • Hi, My boyfriend was diagnosed with MD a few years ago. He is 27 now. He had no symptoms at the time- a blood test showed elevated CK levels and from there, a muscle biopsy confirmed the diagnosis. They ...

Anyone Experiencing Feeding Tube Leakage or Clogs

Duvie
  • By Duvie · New reply yesterday at 8:56 pm
  • Journal · 59 replies · Photos
  • Hello Everyone, Feeding tube leakage can be a nightmare if, like us, were not informed in how to reduce the risk or what products to use in eliminating the skin irritation caused by stomach acid eating ...

HUMOR IS ENCOURAGEMENT TOO...

Survivor29
  • By Survivor29 · New reply yesterday at 7:37 pm
  • Journal · 101 replies · Photos
  • HUMOR IS ENCOURAGEMENT TOO... FUNNY HUMOR...DRY HUMOR...ODD HUMOR...HOENST HUMOR, ...MAKE YA GRIN & SMILE HUMOR,...DELAYED- REACTION HUMOR, ... AAAAH OK, "I'LL GIVE IT A TRY" HUMOR,... SILLY HUMOR ...

Scheduled Maintenance of Inspire 5/30 2-3am Eastern Time

TeamInspire
  • By TeamInspire · Posted yesterday at 11:51 am
  • Journal · 0 replies
  • All, We are planning an outage of the Inspire.com website on Saturday, May 30th at 2-3 a.m, Eastern for system maintenance. The site will not be available for some or all of this window. Please let us ...

HOPEFUL WORDS & SUGGESTIONS THAT HELPED ME IN A TIME OF NEED... PART 1

Survivor29
  • By Survivor29 · New reply May 28, 2015
  • Journal · 15 replies · Photos
  • "HOPE FOR PAIN, INFLAMMATION, GASTRO, BLADDER, BRAIN, NEUROLOGICAL AND BODY REBOUND I WAS NOT WRAPPED IN BUBBLE WRAP IN THE PAST…BUT WISHED I WAS! My hopes for being an outgoing and healthy person, were ...

Urodynamics

CatDave
  • By CatDave · Posted May 28, 2015
  • Journal · 0 replies
  • Yesterday I completed a Urodynamics test – that was about as much fun as you can have in two hours. First they insert a pressure sensor – OK not so bad. It was just a very thing catater. Now that they ...

Need help

priyanka65
  • By priyanka65 · New reply May 26, 2015
  • Journal · 10 replies · Photos
  • Hey guys! I have a unique problem and I hope someone can help me in giving a solution for the same...we have started aqua therapy for ishaan at the local swimming pool. The problem is that he loves water ...

congenital muscular disorder-ullrich syndrome

priyanka65
  • By priyanka65 · New reply May 25, 2015
  • Journal · 7 replies · Photos
  • My Lil 4 year boy has finally been diagnosed as ullrich syndrome leading to congenital muscular disorder or CMD. Since past 4 years we have been clueless about the cause for his condition and the neurologist ...

introduction to muscular dystrophy

fawnmarie79
  • By fawnmarie79 · New reply May 25, 2015
  • Discussion in Raising a child with muscular dystrophy · 22 replies
  • Trying to get a diagnosis for my 9 year old son. He has just had a muscle biopsy done. The doctor thinks it's muscular dystrophy. Hopefully we can narrow it down for the next genetic test. I hate that ...

CARRAGEENAN & SULFA, SULFITS, ETC. WHAT'S IN YOUR HEALTHY FOODS???

Survivor29
  • By Survivor29 · New reply May 23, 2015
  • Journal · 32 replies
  • WARNING: DOES YOUR ALMOND, COCONUT, SOY, RICE, OR OTHER NUT MILK CONTAIN THIS INGREDIENT??? "CARRAGEENAN "…. SULFA, SULFUR, AND SULFITE AND ANYTHING WITH SIMILAR PREFIX OR SUFFIX IN THE WORDING? REGARDLESS ...

Looking for someone thats already been down this road

MandyandAxel
  • By MandyandAxel · New reply May 23, 2015
  • Discussion in Raising a child with muscular dystrophy · 4 replies
  • Hello...My son is 4 years old and recently dx with Ullrich Congenital Muscle Dystrophy. I think I'm doing a good job, but am really overwhelmed! Does anyone know of good swimming instruction in Miami ...

SAVE THE HUMAN RIGHTS ACT OF NORTHERN IRELAND

terryhoey
  • By terryhoey · New reply May 21, 2015
  • Journal · 4 replies
  • It is important for all the people in Northern Ireland to have the right of free political thought and to have the right to freedom of expression of religion the right to pursue democratically national ...

Life with HMERF and the BiPAP machine

CatDave
  • By CatDave · Posted May 19, 2015
  • Journal · 0 replies
  • Caught another cold or it is allergies. Lot of difficulty breathing. I have to make sure it does not get worse so I am throwing everything I can at this. Just do not have the bounce back anymore. Now ...

Starting the HMERF journey

CatDave
  • By CatDave · Posted May 18, 2015
  • Journal · 0 replies
  • After 6 months of testing I had a muscle biopsy that confirmed that I have Muscular Dystrophy (HMERF). That was January 2014. So far it looks like it is slow progressing and it is effecting my core muscle ...

ENFit Connections With Only One Hand

Duvie
  • By Duvie · New reply May 16, 2015
  • Journal · 44 replies · Photos
  • Reading some of the comments, I've realized that there is going to be a huge problem connecting the new ENFit connections for patients who only have the use of one hand. How are they going to screw the ...

Stem cell therapy

craigkaren01
  • By craigkaren01 · New reply May 11, 2015
  • Journal · 2 replies
  • Has anyone tried stem cell therapy? Our son was diagnosed just before Christmas having Becker/duchenne and his symptoms are becoming more problematic and we are looking for some different options ...

Hereditary myopathy with early respiratory failure

CatDave
  • By CatDave · Posted May 9, 2015
  • Discussion in Newly diagnosed · 0 replies
  • Got the news in January after a year of testing. Finally had a muscle biopsy to confirm. So it is what they call HMERF due to the TTN gene. Not a lot of writing out there but some research in Norway ...

Hereditary myopathy with early respiratory failure

Hape
  • By Hape · New reply May 9, 2015
  • Journal · 5 replies
  • I went to see the neurologist last week. The news was that they have found a new version of MD or MFM. I'm not sure, as I had my youngest son with me to the doctor's. You tend to miss information when ...

What do you wish your doctor knew?

Brian
  • By Brian · New reply April 30, 2015
  • Journal · 663 replies · Photos
  • Dear members, Some of you have seen the story of the schoolteacher who asked students to anonymously finish the sentence, “I wish my teacher knew…” in an effort to get the children to share something ...

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