It has been a long hard journey. For many years I dragged my daughter from one doctor to another looking for answers to what might be wrong with her. Her brain wasn't working right. She was slow,weak,developmentally behind.
It was my son that finally gave us the answers we were looking for. My son, now 18, was taken to a sports physical doctor. His hand are deformed and when he would make a fist, it would take him about 20 secs to open his hand up. He was referred to a neurologist where the diagnosis for MMD was made.
I was in total shock. I can home and asked my daughter to make a tight fist and open her hand up quickly and her hand was also slow to open. My search for answer were over.
I have two kids with Myotonic Muscular Dystrophy.
If that wasn't bad enough, my daughter was 5 months pregnant when we found out.
Both my kids have weak throat muscles that makes it difficult to swallow. They are at risk for inhaling food into their lungs which can cause pnemonia. Feeding bag into their stomach is the only option. I pray it doesn't get to that.
Their brain is greatly affected. Learning difficulties, making everydays decisions, very unmotivated, no socializing skills so they are loners,
Fatigue is a big issue that they battle everyday. They can take a 3 hour nap everyday easy.
Waking up in the morning is hard.
low blood pressure which causes dizziness and lightheadedness
Of couse weak legs and arms
my son had speech difficulties due to weak facial muscles
My daughter is going to be needing a wheelchair in the near future. It is hard for her to walk for very long before her heartrate goes sky high and needs to rest.
They will never be able to live on their own which is fine with me. I love having them at home.
It was my son that finally gave us the answers we were looking for. My son, now 18, was taken to a sports physical doctor. His hand are deformed and when he would make a fist, it would take him about 20 secs to open his hand up. He was referred to a neurologist where the diagnosis for MMD was made.
I was in total shock. I can home and asked my daughter to make a tight fist and open her hand up quickly and her hand was also slow to open. My search for answer were over.
I have two kids with Myotonic Muscular Dystrophy.
If that wasn't bad enough, my daughter was 5 months pregnant when we found out.
Both my kids have weak throat muscles that makes it difficult to swallow. They are at risk for inhaling food into their lungs which can cause pnemonia. Feeding bag into their stomach is the only option. I pray it doesn't get to that.
Their brain is greatly affected. Learning difficulties, making everydays decisions, very unmotivated, no socializing skills so they are loners,
Fatigue is a big issue that they battle everyday. They can take a 3 hour nap everyday easy.
Waking up in the morning is hard.
low blood pressure which causes dizziness and lightheadedness
Of couse weak legs and arms
my son had speech difficulties due to weak facial muscles
My daughter is going to be needing a wheelchair in the near future. It is hard for her to walk for very long before her heartrate goes sky high and needs to rest.
They will never be able to live on their own which is fine with me. I love having them at home.
