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How I See It: Hello 2017

hello-20172016 was a year full of lessons for me. I spent most of the year trying to figure out who I was, where I wanted to go, and questioning what I was doing with this life. It was the first full year I spent away from my family. There were many nights spent staying awake, questioning every decision that lead me here.

It was a very difficult year – probably the most difficult I have ever experienced. It was both mentally and physically draining. It got to a point where I wasn’t sure what I was going to do, and how I was going to go on. Months would pass by where I didn’t write a single word, and I just didn’t have the energy or motivation to do it. I stopped reading; I let my hobbies fade away. I complained about everything, and I found myself showing hatred more than kindness. Sometimes we hit a brick wall, and I think 2016 was the year I finally hit mine.


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How I See It: Ivana Explores the World of Technology Part II

Business on a laptopThis post is a continuation of the last How I See It installment which can be found here

Over the course of the next few years, living with a disease such as MD will be easier thanks to technology. More assistance will mean it will be possible to complete daily activities and some aspects of life may not become so challenging.  Here are some examples of technology that is currently in the works, or already available.

The company created a sensor designed to measure the ratio of fat and muscle fiber in a user’s muscles. The Aim can measure 12 different muscle groups and estimate total body fat percentage from these readings. It can store the profiles of up to six different people and sync with iOS and Android devices using Bluetooth. Co-founder Seward Rutkove is a Harvard educated neurologist and provides medical devices used by research teams investing muscle-wasting diseases such as ALS, Muscular Dystrophy, and Spinal Muscular Atrophy. Currently, Skulpt is focused on fitness rather than the injury prevention market; however, future versions of its device could be used to detect even the slightest damage.

Monitoring Muscles

A new handheld device could give doctors more precise date about muscle health – painlessly. Currently, the best way to diagnose and evaluate muscle degeneration involves an uncomfortable needle test. A new device could provide a painless, noninvasive, and quantitative alternative. The prototype handheld probe, similar to an ultrasound probe, measures electrical impedance in the muscle, which changes depending on the health of the tissue. This useful research tool can help doctors understand in more detail how EIM readings relate to the underlying tissue changes with disease.

Controlling a Computer with Your Eyes

            Researchers at Imperial College London have developed an affordable technology that could allow millions of people suffering from ailments like Parkinson’s, Muscular Dystrophy, or spinal cord injury to interact with computers – using just their eyes. They have built a 3D eye tracking system that allows patients to interact more smoothly and more quickly than existing invasive technologies.

The Sesame Smartphone

The Sesame Smartphone is an Android device, which is designed specifically for people with mobility impairments. The smartphone is activated through a clever voice command – “Open Sesame” – and is operated entirely through head movements and voice control. The smartphone has a front facing camera that searches for your face in the frame. Once the system finds your face, you can control a cursor by moving your head up, down or sideways. When you rest in one position for a few seconds the navigation icon will appear and ask you if you want to click, swipe, or see more options.

Sesame was developed by Oded Ben Dov, an Israeli entrepreneur, app developer and computer expert Giora Livne who served as a naval commander in the Israeli Defense Forces.


            Per Uddén is a remarkable individual who has a talent for seeing new possibilities where others see none. He is a doctor, entrepreneur, inventor, and father. Being the founder of the Permobil company, he has never been afraid to fight for his vision.

Twenty years ago I was still a kid, unaware of anything except the latest Barbie and sneaking candy in my mom’s grocery cart. I had no idea about limitations; about the daily struggles of individuals in minorities. Upon research, about twenty years ago wheelchairs were not able to drive both outdoors and inside the home. Electric vehicles were very limited and very expensive. Which is why Per created the first chapter of Permobil. He has never given up his mission in which every disabled person has the right to have his or her handicap compensated. He has since passed away but his mission remains alive – now and always.

If you visit the website you will find so much information and resources in finding the perfect rehabilitation solutions. The products are always improving and customer satisfaction is very important to the company. They believe their products must always comply with or exceed approved specifications.

Promising Treatment

A drug called antisense oligonucleotide is made up of a short strand of nucleic acids, the building blocks of RNA and DNA. The molecule is designed to eliminate the abnormal part of the protein in a subset of children with a specific mutation in the gene for dystrophin. It is being developed by Prosensa, a Dutch biopharmaceutical company and pharmaceutical giant GlaxoSmithKline.

Two new classes of experimental drugs shown to have powerful muscle building capabilities are “Selective Androgen Receptor Modulators (SARMs)” and “Myostatin Inhibitors”. Scientists have developed antibodies to Myostatin and other molecules that can boost lean muscle mass in animals by as much as 60 percent. It’s not yet clear how well Myostatin inhibitors will work in humans. Clinical studies of two Myostatin inhibitors are now under way for muscular dystrophy and other muscle-wasting diseases.


Ivana was born in Sanski Most, Bosnia & Herzegovina but moved to Canada at the age of 3. She was diagnosed with LGMD a few years ago and it has forever changed her life.  She is a regular contributor and her blogs will be everything she has learned along the way and what she continues to learn today. Read Ivana’s personal blog at: 


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