Have Muscular Dystrophy and Thinking of getting a tracheostomy? Don’t get it before reading this!

Do you have Muscular Dystrophy and are you or your child, relative, or loved one in general thinking of getting a tracheostomy aka trachea ? Well before you do, there is an non invasive alternative that works just as good and that doctors do not even know about. They only know what has been practiced over the years.

 

According to NIH, A tracheostomy (TRA-ke-OS-to-me) is a surgically made hole that goes through the front of your neck and into your trachea (TRA-ke-ah), or windpipe. The hole is made to help you breathe.

 

Now, just to clarify, I am not a doctor nor a medical specialist. I am simply speaking from experience as a 30 year old individual with Muscular Dystrophy and on what is working for me.

 

So what non invasive method works? The answer is to use a CPAP or BiPAP machine, anyone will work, I use the one called the Trilogy 100. It’s mainly used for sleep apnea but I use it for nearly 24/7 breathing when I can. I even hooked it up to my wheelchair so that I can use it on the go. I don’t feel out of breath and I get the same amount of air as I do via trachea.

 

Trilogy 100

Trilogy 100

My doctor already suggested that I have a tracheostomy but I refused because I wanted to maintain my lifestyle. And if the giant mask that covers half your face (nose and mouth) is too annoying, you can do what I do and use the nasal nose piece that only covers your nose. The one I use is Resmed Swift LT.

 

swift-LT

Swift LT Mask

And since you get less air with a nasal mask, I went into the machine settings (not allowed btw without doc’s permission) and adjusted the max/min air pressure to 30.
Really if you think about it, the only reason that the tracheostomy is needed is because people with MD just have weak muscles enough so that your body struggles to take deep breaths making it slightly harder to breath. So really the BiPAP/CPAP machine is just as effective and performs the as purpose as the trachea. This is my logic and my analysis on why this works.

 

I basically need the trachea, but with using my BiPAP machine nearly 24/7, I feel great and my heart feels great as if I did several years ago. I feel as if I’m at my prime when I did when I was younger when I did not need to be on this machine. So before taking that ridiculous huge step that can alter your life. Try using a CPAP or BiPAP machine all day and night for at least a week or so, and if after that you still feel out of breath try having your doctor adjust max/min pressure, a full face mask or a different mask that works for you. And please leave the tracheostomy to the absolute last resort!!

 

Any questions feel free to contact me directly.

How do you find a job as a disabled person regardless of disability?

Have an obvious or non obvious disability? Here’s how to get a real professional job as a person with a disability, not just a physical disability…. ANY disability. 

Rule #1 – Initial stages – Interview phone screen stage

Do NOT tell the company you have a disability when you first speak to them, especially during the initial stages such as the phone screen. Go through the phone screen and first pass it.

Rule #2 – Interview stages – Interview in-person stage

Now that you passed the phone screen, there’s no way around it, they must see you. So now this step highly depends on your situation. If you need some kind of accommodation during the interview you need to tell the recruiter what your accommodations are for the in-person.

If you do not need any accommodations but you’re somehow physically disabled, you can disclose your disability at this point. After all, some companies do have stairs as their main entrance especially start-ups. But how? Some might find it awkward, like me, to simply say “Oh by the way, I use a wheelchair!”. The way I go about it is I ask the recruiter “Are there any stairs to enter the building, I will need an ADA entrance”. This will nicely imply that you use a wheelchair.

If you feel uncomfortable about mentioning anything about your physical disability, then dont disclose anything. Just show up and surprise them!

Rule #3 – Interview stages – Interview in-person stage – DURING THE INTERVIEW

So you’re talking to the hiring manager during the in-person and you clearly have some kind of disability. Well legally its against the law for any potential employer to ask you about your disability at any point, so the interviewer will never ask you about your disability.

So what do you say? Do you not say anything when its clearly obvious y

 

What we are about and the purpose of the UnDisabled Site?

What is the intention of this site you ask?

Well the answer to that is simple, I along with another friend of mine, Skyelar Willis, wanted to start a blog to highlight our lives and what it’s like to live with a disability. We wanted to do something different and help educate people and perhaps inspire other disabled people along the way.  We want to show everyone how we’ve overcome the boundaries of our disability and concord it. We do not want to focus on one specific subject but we will be blogging about general subjects relating to our disability in someway. I truly hope that everyone enjoys this site.

The meaning behind the name ‘UnDisabled’ is that while we clearly are physically disabled and use wheelchairs to get around; We’re not truly disabled if that makes sense, the way I see it is that we are just regular people who just happened to be sitting down 24/7. We’ve achieved the impossible and sought an education levels from Bachelor of Science to Masters of Science in the tech field. We both are total computer nerds both Majoring in Computer Science, but we also have a humble side to us as well which is what we hope to share with our audience.

To find out more about us visit the About us section.

If anyone has any questions for us we created a contact form that you can use to email questions to us. We will post your questions on a separate page once we get enough of them with our responses.

Thank you,

Ibrahim Yusuf

 

Who is Ibrahim Yusuf? Just a little background.

So my name is Ibrahim Yusuf. I basically use a wheelchair to get around. I have a disease called Muscular Dystrophy. Some people might consider me physically disabled :P.  Any who, I thought that a great way to introduce myself is to re-publish an amazing article that my friend, My Nguyen – a writer extraordinare,  wrote about me back in 2009 when I was still attending SJSU. It was for an school magazine written about disabled persons. I’ll share more stories from that magazine later but here’s my story, enjoy! :

Ibrahim Yusuf, a 24-year-old computer science major, is no stranger to the multiple organizations he’s active in around campus, although it took him several years to reach the comfort level he has today.

Yusuf was born with autosomal recessive muscular dystrophy, a disorder in which the skeletal muscles progressively become weak and degenerated, according to the National Institute of Neurological Disorders and Strokes Web site.
Yusuf was diagnosed with MD after getting a muscle biopsy when he noticed he couldn’t do certain things, like walking long distances.

At eight, Yusuf started using a push chair and was determined to walk, but after being on and off his chair for six years he was forced to stop walking after his legs gave out.

“It was weird; It was to the point where it wasn’t safe for me to stand anymore.”

Yusuf said. At 17, Yusuf had spine surgery where two metal rods were implanted into his back to correct his sclerosis.
Although doctors told him the surgery would result in the immobility of his limbs and the inability to feed himself, he persevered and is now able to not only feed himself, but can extend his arms and legs to an extent.

After surgery, Yusuf felt depressed and self-conscious about his image and when his mother enrolled him in another school, he became the subject of torment for other students, he said.

“It was a wake up call; For a long time I was babied and I was not aware of the real world. I didn’t know how to deal with it, but after that I was able to.”

Yusuf said he used to feel sorry for himself and because of this he was unconsciously sabotaging his relationships with people.

“The problem I had was I didn’t know if people were nice to me because I was in a wheelchair or because they were my friends,” he said. “I was testing people to see if they would stick around and if they passed, then they were my friends.”

Everything changed for Yusuf when he started high school. He was surrounded by a new pool of friends who accepted him for who he was and he developed an exceptional sense of humor.

“It is important to me as someone with a disability to have a good mental state,” he said. “People don’t care if you’re disabled or not. If you have a good mindset, people will notice.”

Today, Yusuf uses a power wheelchair instead of a manual because of his lack of upper body strength. He no longer al- lows his body to interfere with his life or the organizations he works with, such as the Disabled Student Association and the Environmental Resource Center.

Yusuf commends the accessibility of San Jose State University’s campus, as well as the students attending it. “SJSU is really opened minded,” he said. “The social acceptance of people on campus is unbelievable.” One thing Yusuf wants people to understand is that just because he’s in a wheelchair, it doesn’t mean that he isn’t self sufficient or isn’t as able as everyone else. He wants to be treated equally, he said. 

 -Article written by My Nguyen

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image by Sandra Santos