SMA and Sleeping Better and Moving at Night

Uncategorized May 16, 2020
 

1 Challenge of SMA Kids

Children who have progressed in the disease of Spinal Muscular Atrophy (SMA) need to be constantly moved at night to stay comfortable and to avoid pressure points. Even with my baby who received Spinraza at 3 weeks needed additional care at night until she became strong enough to move herself at night

 

I understand the utter exhaustion an SMA parent feels when caring for their SMA child at night. For those who don't have help at night, a parent is constantly on edge waiting for the sound of some machine. 

 

  • The Bipap machine signaling a big leak in the mask, or the child needs suctioning
  • 30 to 60 minute long respiratory treatments in the middle of the night (sometimes multiple) 
  • The oximeter, saying the child is low on oxygen, or possibly letting the parent know of a mucus plug
  • The food machine going off
  • Getting up anyway to change the child's position to avoid a pressure point if a machine has not gone off. 

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SMA Type 1 Sitting Without Support for the First Time

Uncategorized May 09, 2020
 

At 10-months-old, my daughter with Spinal Muscular Atrophy (SMA) Type 1 is sitting for the first time and sitting without supporting herself heavily with her arms.

Using the Movement Lesson™ technique, I am teaching her how to find balance. I have heard many therapists say, "more muscle means more movement." I have come to learn that more rotation and counterbalance in the system means more balance and movement in the system. 

I have two children with Spinal Muscular Atrophy (SMA) Type One. Both can sit independently without supporting themselves with their arms. So how is this accomplished? 

Without getting into too much detail and confusing you, you will have to take my word for it when I say that I helped my children achieve this milestone by putting rotation and counterbalance into their pelvis, spine, and head. 

Though I won't take all the credit for my child's success. I am a certified Movement Lesson™ Practitioner, but once or twice a...

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3 Ways You Didn't Know That Help Your Child with SMA Move Better

 

3 Ways You Didn't Know That Help Your Child with SMA Move Better

When Spinal Muscular Atrophy (SMA) begins, the body starts to rapidly turn off functions to the body to sustain life-sustaining organs for as long as possible.  

When I gave birth to my first daughter with SMA, we had no idea why she didn't move. At her two week appointment, the Pediatrician said, "Let's wait a month and see where she is at then."

 I knew I couldn't wait that long; Something was wrong now, so I started in-home therapy with her. From two weeks old to six weeks old, I worked with her every day. Day by day, I saw increased movement even though I could see her becoming weaker and weaker. 

Fast forward 2-and-a-half-years later. I had another baby with SMA. At birth, we didn't know it. At seven days old, we drew blood samples sent them to a lab, and a week later, the doctor said, "She has Spinal Muscular Atrophy too." 

Before the blood draw, I knew my baby had SMA. With my first...

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Can a SMA Carrier Be Athletic?

sma sma type 3 Nov 06, 2019

"I would not call myself athletic by any means. I can't run or jump at all but I used to when I was young. I'm able to bike and kayak for sure now and I lift weights but not very heavy. I remember quite a few years back hearing about a guy that road in the Tour de France and a few years after he started to develop symptoms and was diagnosed with SMA."

"Click on the photo and you will be able to watch the video of an interview that was done on my SMA and my treatments of Spinraza. I am on this site so much and love watching these little ones make so much progress. I have fought for over 25 years working out in the gym 6 days a week (with a rare break that I could maybe count on my two hands) to prove my diagnosing neurologist wrong...he told me I could not do what I am doing today. Look forward to an update in about 6 weeks where I pursue a great adventure. I just hope this interview gives hope to others!"

Kurt Beach - Springfield Athletic Trainer SMA Type 3

Click Here

 
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Movement Lesson the Anat Baniel Method (ABM) and Doman International

abm doman movement lesson Oct 24, 2019

DOMAN INTERNATIONAL***

-The brain is the reason for the lack of movement in the body

-The ultimate goal is one of wellness

-Movement is created based on a holistic system of treatments involving all the senses


ANAT BANIEL METHOD®**

-If brain function can be changed then movement can be changed

-Touch is slow and soft. The goal is to make the body aware of where you are touching so it can create movement there

-The brain organizes the conscious and subconscious movement

-Self-developed enthusiasm must come from the patient in order to encourage the brain to make the necessary movements in the body

-Movement is created based on the principles of “variation and playfulness into everything you do [to] awaken all your senses”

-The brain is either in learning mode or it is not. The goal is to get it into learning mode so progress can be made in the body


MOVEMENT LESSON™*

-The lack of rotation in the system is the reason for the lack of movement in the body

-Touch is...

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How to Reverse Scoliosis

"I've been seeing this wonderful family for over 8 years. We do one or two intensives a year and see each other twice a week. He was 100% fixed with at scoliosis of 77 degrees when we started. Recommenced to be rushed to surgery for rodding. He's never needed the surgery. He's comfortable and healthy. What has been really been remarkable is that, despite his general well being, he's never had a pneumonia or been in the hospital during the years of treatment. Only once, when I was in India. He's now 26 years of age."

-Michelle Turner-

 

Hi, my name is Erin Fulks,

I am a Movement Lesson™ Practitioner. My goal is to guide you through the Movement Lesson™ (ML) process to get you the help that will change your child’s future forever.

You are reading this post because you want to learn how you can start reversing or improving scoliosis.* I first want to show you a case study of a young man who, at nine-years-old, experienced an accident. He started ML at...

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