Actor / EntertainerI'm Mark Proksch, from The Office, Better Call Saul, and star of the new ghost hunting comedy ANOTHER EVIL - AMA!
May 5th 2017 by MarkProksch_AMA • 15 Questions • 88 Points
UPDATE: Well that's a wrap on Day 1 of CF Awareness month. Thank you all for the wonderful questions - I am always impressed by them! You can always contact me elsewhere on the interwebs with questions. I am always happy to talk. :)
I did an AMA to kick off Cystic Fibrosis Awareness month last year and the response blew my mind! I decided that this would be the way that I would kick of CF Awareness month every year. Each year, I will have a new year's worth of experience and hope to continue to raise awareness so that we can cure this disease! One of my biggest beliefs is that the best way to spread awareness is by simply sharing your life and experiences.
"Cystic fibrosis is a progressive, genetic disease that causes persistent lung infections and limits the ability to breathe over time." - Cystic Fibrosis Foundation
However, Cystic Fibrosis also affects other areas of the body. The other major one being the digestive system.
I began blogging a few years ago, which developed my love of writing and advocating for Cystic Fibrosis. As my blog grew, I had more and more people asking for updates on my health. That's when I began vlogging on YouTube. I am still trying to find a balance between it all, but they are all passions I hope to continue!
Here is my proof and links: Proof
My friend who has the disease used to have a fairly grueling physical training regimen. His father used to cup his hand and hit him in the back to help break up some of the mucas inside. I guess my question is whether or not there has been progress in that respect? Or if that type of physical therapy is still required? It was always hard to listen to when we would hang out. I felt bad that he had to go through it so often. But hey he's still alive and doing very well for himself so I guess it must have helped.
Excellent question!!! Yes, there has been advancement. There are many airway clearance devices nowadays. The most popular machine being "The Vest"... which I am currently doing. :) It is a machine that has a vest attachment that puffs up and vibrates to break up mucus. There are also other machines (that can vary as to where you live) and hand-held machines too. Manual PT (what you described in your comment) is still an effect therapy for airway clearance. My partner is actually learning to perform manual PT for me as soon as his schedule clears up because The Vest alone is just not as effective as it used to be.
Good OP. As a doctor i know what you go through. All the best and God bless you.
Thank you for your support and what you do. :)
that's a good question, I would probably have seen a therapist if, and i know this is going to sound bad, if my mum was not the person who suggested it. There's no malice between my mum and I, we love each-other to bits. it's just that when your mum has been saying for 17-18 years to do your medicine, if she says see a therapist it would have just sounded like noise "just another thing she's nagging me about".
If the suggestion came from a outside source, like a friend who's never commented on my health before.. I believe it would have made me stop and think that maybe there's something to it.
As for exactly what to say.. I really don't know. I guess it would have to be a fairly frank conversation with them to spell it out.. thing is at that age, the important thing on most 17 year old's mind is school and/or dating, not picking fights with their best friends.. so it would probably have not happened.
hindsight as they say is 20/20. I know now that therapy would probably have helped me back on the path to recovery earlier, but at the time there was in my mind "nothing that anyone could do to make it better" so I'm not sure how effective it would have been.
I'm paying for it now, but I kind of feel that I needed it to go wrong. I learned humility practically overnight, and did a lot of growing up staring at the hospital ceiling.
My parents were always open with me about the realities of CF. If I asked them why, they would tell me. I personally love that they handled it that way.
I had my own personal revelation when I went off to college and I started having CF really affecting my life. I had to start fighting harder to keep myself healthy and sometimes, no matter how hard I fight, I still lose battles. It's just part of it.
I'm training to be a respiratory therapist. I admire your AMA and love that you spread awareness with such charisma. My question is "what can I do, as I prepare to be in a field working with CF patients, to be the absolute best for you ? What makes you happiest if you are in a situation that would have us meet?"
LEARN TO PLAY MARIOKART!!! Haha. I know that seems like a silly answer, but my favorite hospital memories are playing MarioKart with my RTs. CF patients deal with a lot of medical people, so the ones that treat them like friends rather than a patients are gold.
Have you seen the movie "Sick: The Life and Death of Bob Flanagan, Supermasochist"* and if so, how do you feel about it? Considering that it is a tough movie for anyone to watch I would imagine it would be extra rough for you.
*For those who have not seen it, it is a documentary chronicling the life and eventual death of artist/CF sufferer Bob Flanagan.
I have not yet, but I hope to some day. Where is the best place to watch it? I have watched other CF movies, but I am more of a reader. I find that they are rough, but I imagine they are rougher for individuals without CF to read. Haha. We are accustomed to trials of CF and so might not find them as difficult to watch/read about. I read the stories more out of interest. Each CF patient is so different and we often have very different lives -- that is something that truly fascinates me.
Are you aware of any promising new treatments for CF? What treatments have you been through? Thanks for sharing and good luck to you.
There are always studies going on. I try to participate in as many research studies as I can. Unfortunately, with my big health drop I am not eligible for any at my clinic at the moment. I was in a 2 year long study for Orkambi, which is a gene therapy drug that has helped many people keep stable with their health. Unfortunately, we did not see those results in my own health.