IamA ALS patient diagnosed @ 26 years old

Some people on reddit are asking if I'm "pretending" to have ALS to get donations... its crazy ignorant but here's a link to my doctors notes that clearly state I have ALS... btw i'd rather be poor and living on the street than have this horrid disease:

https://www.facebook.com/photo.php?fbid=10204716699060836&set=a.1129853890021.20231.1337452401&type=1&theater

I'm stepping away from my computer for three hours to look at a wedding venue with my fiancee :) I'm getting married in November, wahoo! Ill answer any unanswered questions when I return at approximately 8:30pm Please keep the questions coming and the conversation going! Much love and gratitude. You can see some beautiful engagement pictures of my fiancee and I on this blog while I'm away... if you'd like :) I'm a lucky guy.

http://www.samhurdphotography.com/2014/engagement-shoot/artistic-engagement-session-anthony-laarne

My grandpa was diagnosed with ALS 1 1/2 year ago. It was horrible to stand by and just watching someone you love slowly die. It went really quick for him. At least he is at peace now.

Your video was very touching and I feel for you! I am going into biomedicin just so I can search for a cure for ALS... I made that promise to myself when my grandpa got sick.

I wish the best for you and that your life will be filled with joyful moments.

If anything, you are strong and I believe in you.

I have one question for you: is there anything as a student I can do for you?

I got chills reading your comment / question. Empowering other students, faculty and peers about the severity of this disease.... you're already contributing so much of yourself. We need more motivated students & researchers.. Just study hard for yourself, grandpa and entire ALS community ;) but most importantly, make sure you make time for yourself to live fun AND meaningful life

I really have no words to say. Your family is really brave, and I hope you win your fight against ALS.

Thank god the ALS Ice Bucket challenge happened, research is funded.

Do you think you would feel more scared if the ice bucket challenge never happened? Has the ice bucket challenge given you more hope?

I hope I didn't upset you with my question. Best of luck, people are on your side. Be optimistic and see the better in life.

The ice bucket challenge give me a lot more hope... virtually zero of my peers knew what ALS was.. now almost everyone I'm around understands its prognosis and it's the first step to finding a successful treatment. You didn't upset me in any way!

Since it has been a topic of debate, do you feel that doing the Ice Bucket Challenge without donating money is still beneficial to the cause?

It is absolutely still beneficial... as long as they are at least mentioning ALS it's worth a bucket of water in my opinion. The people they challenge may investigate it more... awareness is equal to donations in my opinion.

Are you considering trying to get into any clinical trials with stem cells? My uncle took part in one a while back.. It worked for some of the participants as far as stopping the progression of the disease (it even helped regenerate a little for some).

Here's what my uncle took part in (phase 2, he was one of the 15)

http://www.neuralstem.com/cell-therapy-for-als

Wishing you the best.

Awesome!!! I haven't fully considered it yet but will investigate it further especially after this post.. Thank you!

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I want to live as long as I can, period. All ALS patients become completely immobilized. I'm going to fight as long as my body allows it. If I can choose, I would live as long as Stephen Hawkings...It takes a lot of mental strength and I'm preparing for it.

You are a very brave person! How did you find out that you were diagnosed? (Excuse me if that sounds rude, I'm just curious)

Thats not rude... eternally65 question above ^ was a little rude though... not a problem.. I just answered that question and I'll copy and paste my response. Much love! :

It started off with profound hand weakness.. I couldn't carry a camera very well and I had intense muscle spasms and twitching (I'm a photographer) I was initially diagnosed by Doc Kristen Lueck after a positive painful EMG (where they stick needles into your muscles and shock you) at Kaiser, I then got a second opinion from my mom's neurologist and was diagnosed at UC irvine ALS clinic by Dr. Mozafar, also I have genetic testing from Northwestern University from Dr. Teepu Sidique they told me I have the genetic mutation responsible for ALS.. Currently my hands and arms are atrophying away and I have constant muscle spasms, twitching and cramps...

Thank you for the response! Do you have trouble typing answers to all the questions you're getting?

Yes actually. My fingers cramp up and are kind of sore.. it's been non stop all day but I'm excited and simply want to keep a positive conversation going...hopefully its making a difference.. and I definitely need to take a shower HAHA

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It was gradual.... i first attributed it to carpal tunnel and fatigue. I photographed 45 weddings last year...It was a lot of work! Especially, caring for my mom while doing my photography was pretty intense. I ignored my symptoms at first, but then got to a point where I was profoundly weak and was convinced I had ALS.

Do you have a particular organization that would benefit from the donations, ALSA or ALSTDI or local ALS associations?

ALS TDI all the way you can find them at ALS.net... also Northwestern University has an amazing research program that's worth considering. Dr Teepu Siddique at Northwestern University actually found my family's genetic mutation.. it's a brand new mutated gene that hasn't been published yet... hopefully in the next coming months.

You mentioned a sibling- does he/she also have ALS?
Also, I know this may be a sensitive question and don't answer if you feel uncomfortable, but are you and your fiancee planning on having children? Thanks for doing this AMA!

Good questions!! My fiancee and I aren't planning for kids at the moment (we have a lot on our plate already) but if we do it would be through the adopting route... that is unless a cure is found.. #stayinghopeful My sister does not have ALS and does not want to know if she has the genetic mutation.. she says she's also going to adopt one day :)

This disease fucking sucks, man. Most motor neuron diseases are horrible. I just want to let you know that there are clinical trials for possible treatments here:

https://clinicaltrials.gov/ct2/results?term=Als&Search=Search

Thanks buddy! This information is valuable to the entire ALS community!

The ice bucket challenge has reached the UK, but it appears to have been taken over by McMillan (Cancer care nurses). Do you feel that this detracts from increasing knowledge of ALS?

We've already gotten a lot of momentum... it's not bad if other organizations are also benefiting from the virality of the challenge. More power to them! There's a lot of disparity/need and if everyone became more passionate about making a difference... this world would be a better place.

Wow, that was such a powerful video. I wish you absolutely nothing but the best in this tough, dark time.

Tough to pick a really good question, because you answered a lot of the ALS-related ones pretty well in that video, but without intending to offend, I guess I'd ask what your fondest family memory is? I know you said your mother was diagnosed when you were in HS, so I hope thinking back before then gives you some warm, happy memories.

Stay strong, bud!

I appreciate your kind words my friend.

My favorite memories... well... after I graduated from LMU I moved back home to help care for my mom (she was becoming A LOT more dependent) and I started my photography business. You can see my work here: www.AnthonyCarbajal.com

It was perfect, I spent every weekday caring for my mom and editing pictures with her on my side and on the weekends I would photograph "love" She critiqued my work, shared stories, laughed at the funny moments I captured... but most importantly I got to spend quality time with my mother that I didn't have as a child. My mom was a single parent with two kids at 16 yrs old and she worked two jobs to keep a roof over our head. The time I continue to spend with her have been the most rewarding and sometime the most difficult while seeing her progression...

Damn. You're really good. Who is shooting your wedding?

Awww thanks buddy!! The talented Sam Hurd is shooting my wedding :) He's donating his time! He's awesome!

How did you get tested? I lost my uncle to ALS and there's a very strong chance that if I don't have it I'm at least a carrier.

I'd like to get tested, but it honestly scares me.

Stand strong, I'm happy that it's gotten so much attention. Fight on!

This is Anthony's fiancee: Neurologist conduct very uncomfortable tests to find the manifestation of ALS in a person. The diagnosis is symptom based. Anthony found the need to see an ALS specialist when he started experiencing weakness and non-stop twitching on his upper extremities.

I would suggest if you don't have any symptoms to keep living a stress free/healthy life. According to what I have learned, people may have the genetic mutation but not get ALS. Something that is unknown triggers it.

Thanks honey :) I love yah!!

My fiancee took the words out of my mouth... if you have no symptoms, than there's no urgency in getting tested for a genetic mutation that's responsible for ALS.... Because (here comes the confusing part) just because you have the genetic mutation, doesn't mean you'll get ALS... there's something that triggers the genetic mutation to manifest into ALS..

My opinion live your life, and if you don't have any other family history of ALS, you're most likely good! Only 5-10% of ALS cases are familial.

Your video broke my heart, and it hit too close to home. My brother, who is 26 years old, has late stage Duchenne Muscular Dystrophy. He lost the ability to walk at the age of 10, on a ventilator 24/7 at the age of 18, has a gastrojejunal tube for feedings and medication, and he can no longer use his hands without assistance. Despite all the challenges, we try to make his life as normal and happy as possible. He always puts others before himself, and it absolutely breaks my heart to see him in that situation because he's one of my best friends and one of the sweetest, most genuine people I know. I don't want anyone to go through anything like we've experienced.

Here are my questions. Please feel free to disregard anything you don't feel like answering.

• I know that the progression of ALS is inevitable. Is there anything you hope to do or travel to before it becomes too difficult to do so?
• What are three of the best memories you've had so far?
• How long has your grandmother and mother had ALS?
• Are there any therapies that can be done to ease the progression/pains?
• Do you have any hobbies outside of photography?

Please don't ever give up hope. I know it'll be a long road ahead, but always remember that you've got friends, family, and even people you don't know rooting for you.

I'm sorry about brother buddy... muscle dystrophy is no fun and we have some similarities. Sending love your way!

traveling... hmm I traveled the world as a successful wedding photographer.. Costa Rica, England, Philippines... and realized traveling is fun when you have someone you love with you to share the experience. I do want to travel... but right now I also really enjoy the lazy days with family :)

my grandmother had ALS for maybe 8 years or so... my mom has had ALS for 13 years now fighting strong!

ALS has NO cure or treatment... sucks. Doc told me to use medical marijuanna and that seems to help calm my nerves, pain and help me sleep!

Hobbies: photography, skateboarding, yo-yo expert! - painting, drawing, oragami, classical guitar, piano - most of which I'm losing the ability to do :/

Hey man, keep on fighting the fight and stay strong. You look great and I hope you can stay that way for a long time. My dad was actually diagnosed with ALS just two weeks ago. They originally thought he had cervical stenosis and had spinal surgery a year ago, but progressively got worse until now they diagnosed it to be ALS. My parents had kept it hidden from me how bad he's gotten since i didn't see them from Xmas until July ( they live in Ohio, I live in Cali). I was very surprised to see him in a motorized chair and he can't really do anything on his own now, but can still talk and eat and has enough hand strength to use his chair. I'm hoping he can stay that way as long as possible while we can try and make more memories with him. We are just in the beginning of this so I need to look into all of the resources available. If for some reason you ever pass along fellow ALS stories or donation pages, I've just made a page for him to try and receive donations to help my parents fight the piling med bills and to try and make him as comfortable as possible. My question is, are there any tips I could give him about slowing progression you may have found? Supplements or diet or anything at all?

Keep it up man, and thank you for sharing.

www.lovefordoc.com

Hey buddy... I'm so sorry to hear about your father.. I hate ALS. If you live in CA, stay in touch and find me on Facebook... i plan on creating resourceful youtube videos on managing ALS. Ask me for support any time!

Here are some treatment options/resources to consider

• rilutek - the only FDA approved med for ALS to add a few months to life expectancy
• medical marijuanna: eases pain, helps manage symptoms and has neuro protective properties that may prolong his life..
• Get fatter!!: ALS patients with higher BMI's statistically live longer
• nutrition - avoid foods that create glutamate in the brain (primarily sugars/grain/bread) and avoid MSG... I'm still figuring this part out myself
• www.ALSuntangled.com - great website that reviews off label treatments for ALS
• MAYBE Deanna Protoccol - some says this regimen slows progression... worth investigating further
• PatientsLikeMe - an amazing resource!

Hope some of this helps! Much love sent your way!

Hey wolfsuit! Not OP but I watched my dad's four year progression firsthand and I understand how difficult it is. Watching him start move from a walker, to a motorized chair, to a chair operated by tapping his head against two panels, to his eventual mutism was very very hard for me.

My father found that breathing exercises helped him stave off the complications related to swallowing, speaking, breathing, etc. Sorry I don't know any specifics. My father was very spiritual and into holistic medicine so he also meditated and seeped Chinese herbs (I remember hating how much they smelled!!).

Good luck man, you're in my thoughts! Feel free to message me too.

Edit: www.ccals.org/home.php This organization really helped my family with getting ahold of items like shower chairs, bed lifts, scooters, in-home nurse contacts, and hospice info! They were also very supportive emotionally for my family (their founder was close with my dad, came to his funeral). I've been giving them a shoutout in this charitable time of the ice bucket challenge. Definitely see what they can do for you, and if anyone is so inclined, donate!

So much valuable information here.. thank you for sharing, some of which I wasn't aware of. Awesome!! #strongertogether

What do you think of the als foundation only spending 7 percent of what they make from donations on research?

I think the ALS association’s numbers are ridiculous... Last year the spent 10 million dollars on “fundraising expenses” alone... there's a list of things the ALS community is dissatisfied with the Association.. most of the complaints are valid and sometimes people are looking for someone to blame.. but Listen to this true story: A fellow ALS friend of mine went to the ALS Association conference in Washington DC. He and his wife HAD to get first class seats to accommodate his medical equipment and health at $2,500 a seat that they could barely afford. They said two of the ALS association staff members from CA flew first class right next to them to DC.



I only support ALS TDI where 88 cents of every dollar donated goes directly to research. You can find them at ALS.net

Please don't assume that those staffers paid for first class seats. If they're frequent flyers due to conferences and such, they probably have status with the airline and get free upgrades. I travel very often for work and very, very rarely pay for first, but I get upgraded on about 75% of my flights because I'm platinum with my airline of choice. Most of the flights I'm on have more status upgrades than paid first class from what I can tell.

That is very true... I shouldn't make that assumption. You could be right but I guess we'll never know. I encourage you to take a look at these numbers, though.. go to page 15 under combined revenue and expenses

http://web.alsa.org/site/DocServer/annual_report_fye2013.pdf?docID=107222

I'm not trying to de-value the ALS association. They do provide a lot of patient help / support groups... they're an umbrella type of organization and serve a variety of needs. Last year they used 10% of their donations for research and used 15% of their donations on "fundraising costs".... I'm more driven to support a research driven organization to help find a treatment or cure... ALS TDI

What is your favorite of the following

TV Show

Music Artist/Band

Video Game and Video Game Platform I.E. Xbox,PC Etc.

Game of Thrones Character

and how different is your life now then 7 Months ago?

TV Show - Breaking Bad :)

Music Artist/Band - Jack Johnson

Video Game and Video Game Platform I.E. Xbox,PC Etc - Don't play much video games... but the last game I was addicted to was metal gear solid on playstation 1

Game of Thrones Character - Tyrion Lannister

and how different is your life now then 7 Months ago?

My ALS diagnosis is a reminder to me that NOTHING lasts forever, which makes this present moment a harsh yet inspiring reality. This disease will not defeat me... but only inspire me to FURTHER appreciate these fleeting moments we all experience. I'm definitely a lot more emotional and honest.

I just watched your video, and promptly put it on Facebook. I'm also glad for the charity mention, what led you to support that particular charity? I ask because most people mention alsa.org in their videos, but ALS TDI is ranked higher on charitynavigator. Blessings!

The ALS association is an established umbrella organization that does contribute to the ALS community in a variety of ways but I believe a lot of funds are being wasted. Only 10% goes to research... ALS tdi is 88%.. huge difference

Hey acarbajal! Thanks for doing this. My dad passed away from ALS three years ago after a four year fight. It has been pretty tough on me, especially since my mother doesn't talk about it and I have been left in the dark regarding the medical side of it. I guess what I'm trying to say is that I'm anxious that my father had familial ALS. I (19F) am wondering how you coped with knowing the odds of having this disease?

First... I'm so sorry for your loss. ALS truly sucks. I rarely thought about my possibility of inheriting the disease to be honest... I just thought I was invincible i guess... There's genetic testing that can be done if your truly scared of the possibility.. but only 5-10% of ALS cases is genetic the rest is random.. hope this helps

my mother has ALS and it has been the most challenging thing our family has ever faced yet she amazingly is able stay positive, where do you draw your inspiration and drive in the face of something like that? Also do you ever have moments where you feel angry and bitter?

I'm so sorry to hear that... this disease is so rare but I've been meeting so many individuals. The internet connects us all. My mother is my inspiration.... she strong, wise, a fighter, selfless...

At times I have this thought "Its not fair" and tears usually follow... I do have moments of anger, confusion... but it usually subsides. My fiancee makes everything better, I have a therapist now and medical marijuanna also chills me out!

To start, I'm sorry for what life has thrown at you. I was just wondering what the first thought in your head was after the doctor diagnosed you? Also, thank you for taking such good care of your mom. Being that I lost my mom when I was young, it's nice to see a young person putting aside their life to take care of their mom!

My diagnosis was the worst day of my life... screaming kind of cry that i didn't know I was capable of.. telling my mom I had ALS was worse.. I'll leave that up to your imagination.. I don't feel like crying anymore today HHAAHA

Not sure if you're done/back yet... but if you are:

Have you and your fiancee considered children? I'm not sure how ALS works genetically, but if there's a good chance you would pass it on to biological children, would you prefer to adopt?

Do you have any siblings? If so, how has your diagnosis affected them?

Awesome question! My fiancee and I aren't planning for kids at the moment (we have a lot on our plate already) but if we do it would be through the adopting route... that is unless a cure is found.. #stayinghopeful We could, however, do the in vitro fertilization...but thats something we haven't considered.

Aside from spreading awareness and donating money, how can we help?

You're too sweet.... this reddit community is awesome!

I know in the near future I'm going to need support... and an advocacy Army to help me make a difference, so stay connected through my instagram and twitter at carbajalphoto or even Facebook! :)

Thank you for shedding some light on this topic. I know there has been a lot of debate of about the ice challenge and what's going on, and its easy to get caught up in all of it. Seeing things from your point of view really opened my eyes. I thank you for making this video. You are an inspiration. Anyway, my question is what song was playing in the video? (Kinda irrelevant but I really liked it.) My heart goes out to you and your family.

Thanks for your kind words buddy! It was the only royalty free music I could find... i don't even remember how I found it to tell you the truth.. it's through YouTube's library of free audio :)

Could you talk about the gene that you have? I'm glad somebody at NU was able to help you out!

Yeah!! Its a brand new identified ALS genetic mutation... BUT Dr. Teepu Sidique has not published his findings yet because he says he's still investigating the mechanism behind it... hopefully soon! It does appear to be a slightly slower progression... prognosis being anywhere from 5-14 years. (My mom's had it for 13!) That's really all I have for now :) More to come soon hopefully!

Are you taking any experimental treatments for your condition?

I just read yesterday how antiretrovirals may be protective against some cases of MS. And apparently, there's an HIV associated ALS-like syndrome which is sometimes reversible with antiretroviral therapy. I wonder if anyone has studied antiretrovirals on HIV negative ALS sufferers.

I haven't yet... at least nothing to crazy. This does look super interesting, especially the HIV associated ALS like syndrome...I'll definitely look into it. Thank you for sharing!

Have you done the IB challenge?

EDIT: yeah, it's the Ice Bucket Challenge. I was being lazy, sorry.

I have no idea what the IB challenge is... care to inform?

Ice bucket

OHhhh haha I only did the most epic one ever lol You can see it here:

https://www.youtube.com/watch?v=h07OT8p8Oik

I am most sorry about your condition. But would you provide some proof that you have actually been diagnosed with ALS? All I see here is you taking the challenge and asking for donations to another organization.

How would you like me to prove that I have ALS?!? Tell me and I'll do it... I'm early in my diagnosis so it's not as visually evident as my mother's state. Trust me... I'd rather be poor, on the streets then have this horrid disease.

I was initially diagnosed by Doc Kristen Lueck after a positive painful EMG at Kaiser, I then got a second opinion from my mom's neurologist and was diagnosed at UC irvine ALS clinic by Dr. Mozafar, also I have genetic testing from Northwestern University from Dr. Teepu Sidique they told me I have the genetic mutation responsible for ALS... I'm receiving social security and medicare... that wouldn't be possible without a clear official diagnosis.

Currently my hands and arms are atrophying away and I have constant muscle spasms, twitching and cramps...

I have seen far too many trolls on IAmA, particularly when "hot" topics are involved. Perhaps you could provide a copy of a letter with your name covered by a piece of paper saying "Reddit IAmA"?

I did that already. :) Here's the link: http://instagram.com/p/r5UCQOLbnM/

I saw that, but it doesn't prove you have ALS. Just that you are the guy in the video.

https://www.facebook.com/photo.php?fbid=10204716699060836&set=a.1129853890021.20231.1337452401&type=1&theater

heres a page from my doctors notes that I submitted to social security...