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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

Last year's AMA

The Living, Breathing Wendy

Wendy's World

Q:

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.

A:

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.


Q:

Thanks for sharing, so it's an aerolized antibiotic? Interesting about the vitamins.

A:

The medication list varies A LOT from patient to patient, but for the most part we all take forms of bronchodialators (sp?), medications to thin mucus, and inhaled antibiotics among several pills and vitamins, then add in airway clearance therapy such as The Vest. Plus, IV antibiotics whenever infections flare up.


Q:

Thanks, so it can progress to pneumonia, if you don't stay on top of treatments?

A:

Yes! It can still lead to pneumonia even if we are diligent with our treatments too. The treatments are preventative care, but it's not perfect. The lungs also get scarred from chronic lung infections.


Q:

Good OP. As a doctor i know what you go through. All the best and God bless you.

A:

Thank you for your support and what you do. :)


Q:

What has changed to most for you since last year's AMA?

A:

I LOVE your question! A LOT has changed, actually. My baseline (which is what we call our normal) has had quite a drop and I am in the middle of re-adjusting my lifestyle to fit it. I have an official college degree now (I was 2 weeks away from getting it last time I did this AMA) and am working full-time in my field. That has been another adventure in itself. I am also transitioning in "full" adulthood, which to me means having my own insurance and being 100% responsible for my health care. Those are just the big things.


Q:

So, some pretty big milestones - congratulations, (not on the lower baseline part mind you)! How do you handle the mental side of it; the ups and downs, the uncertainties? How have your parents been handling this time of transition?

A:

Thank you! It certainly has been a learning experience. I have actually been struggling with the ups and downs lately. I am really lucky to have an awesome support system, though. My family and friends are always there for me. I have been reaching out to some close CF friends more lately. That has really helped me... just to speak with people that get it. Then it always leads to joking around and laughing and that's what really helps!

It's funny you ask about my parents because I wrote a post for the CFF blog on that subject. I know my mom is taking the adjustment pretty hard, but they are very supportive. This last hospitalization they drove through a snow storm to bring me food & underwear because it was a surprise admission.


Q:

Aww, the things parents do for their kids. I'll have to check out your post. Do you think your mom is taking it hard because you are making decisions that she doesn't agree with or is it more that she has a hard time giving up control? Has your mom spent most of her life caring for you, going with you to doctors appointments, dealing with pharmacies and insurance etc and now she isn't needed as much? Is she having struggling with finding her own life again, but feeling like she can't make any big commitments in case you need her? (If this is too personal for a public forum, don't feel that you have to answer.) I ask because my young teen was recently diagnosed with cf right around the time that I was thinking of going back to work / changing careers, and every time I think I have a handle on meds and routines, the protocol changes.

I also wanted to ask you how your siblings have handled your illness. Has there been resentment growing up around parental attention, division of chores etc. Are your siblings older, younger?

A:

I think she is just having a hard time because she is a mom. She took me to all my appointments, deals with insurance and pharmacies, and now I am independent. No parent wants to watch their kid suffer. It just makes her sad to see me not doing well and to be in pain and there's nothing she can do to fix it. Long story short, she just loves me. :)

I have an older sibling and two younger siblings. There hasn't been any resentment (as far as I know :P). My siblings are very supportive, which I know I am lucky to have them. My parents didn't treat me any different than the rest of them. In fact, I was kind of the problem child (sassy and trouble-like)... so I had more negative attention. Haha.


Q:

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.

A:

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.


Q:

Where do you see yourself in a year's time? What is on the horizon for you?

A:

THAT is something that has gotten difficult: planning the future. I was just reflecting on this the other day. It's funny because they always ask you if you have problems doing that on questionnaires at the doctors. I have always checked no. The plan was college, career, family. SO much has changed since then. I am working full time right now and I am struggling. I hope that I am still able to work in a year because I love my job, but I just don't know. If my health gets any worse or just doesn't get better, I'm not sure I'll be able to. I also have chosen, with my partner, to not have children. It's too risky for me and too exhausting. It's just so hard to make plans when you don't know what your health is going to look like in a year or if/when you will be hospitalized (I've had some close calls with trips that way). I really just take life as it comes and enjoy the present. :)


Q:

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?"

A:

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.


Q:

Game on! I'd love to play with patients. I haven't played in years though. I need to practice.

A:

Haha. I used to bring my Wii/Wii U every admission. Every one knew me as the MarioKart girl :P


Q:

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.

A:

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.


Q:

I had to get it off Netflix, it's obscure enough that I don't know where else one would obtain it except buying it outright.

Fair warning, you basically see him die on camera though :(

Part of the film's theory is that he became a sadomasochist in part to have some form of control over the pain his body was in due to the CF. Interesting idea, I guess.

Best of luck to you.

A:

Hmmm... interesting. Thanks for sharing! Maybe I'll have watched it by next year's AMA.


Q:

How often are you on Reddit and what are your favorite subreddits?

A:

This question has a funny story to go with it. My first time really using Reddit was for my AMA last year. Then I got on the front page -- my partner is an avid Reddit user and has never been on the front page... so we giggle about that all the time. I go on Reddit about once a week, I would guess. I frequent the /r/CysticFibrosis subreddit, although since we started a Discord I have been on less often. Otherwise I really like /r/aww, /r/funny, /r/mildlyinteresting, and /r/showerthoughts.


Q:

Are you aware of any promising new treatments for CF? What treatments have you been through? Thanks for sharing and good luck to you.

A:

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.