Tips & Stories

User profile: Patrick Jones – Living with Traumatic Brain Injury with help from Evernote

Posted by Megan Soto on 25 Mar 2010

Posted by Megan Soto on 25 Mar 2010

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Name: Patrick Jones
Location: Colorado, USA
Website: Brain Injury Chaplain
Uses: Evernote for Mac and Evernote for iPhone


We hear many interesting and unique stories from our users who tell us how Evernote helps them remember everything, but we never realized how important that could be until we got a note from Deacon Patrick Jones who uses Evernote to, literally, remember everything.

Deacon Patrick Jones of the Catholic Diocese of Colorado Springs has sustained eight concussions since age 12 and as a result suffers from Traumatic Brain Injury (TBI), which causes severe short-term memory loss. In recent years, Traumatic Brain Injury has received some attention because it is among the most prevalent injuries sustained by veterans returning from Iraq and Afghanistan.

How Patrick Jones uses Evernote

In his day-to-day life, Patrick uses Evernote to help him piece together the basic memory flows we take for granted.

In a Psychology Today story published last year, Patrick tells of the process he went through to remember his connection to the article’s author who was calling to interview him:

“First, I got your email and had no idea who you were or why [we] were talking. The history in the email didn’t help much. So I searched “Gary Marcus” in my Mac’s Spotlight, which turned up an Evernote [note] on who you are and why we’re interacting, who put us in touch with each other, a log of our interactions, etc.”

The smallest memory connection becomes an active mapping exercise, helping Patrick to refresh his thought process in order to make daily decisions and engage with people in his life. This process includes taking notes, clipping articles, saving emails and images all into Evernote. When recalling the details of everyday situations, Patrick searches his Evernote account for keywords, tags, and text in images to solidify the memory. The resulting collection of notes help him trace and pull together the pieces of whatever task or connection he might be recalling.

“While I am able to handle various concepts, details disappear in a matter of days. Evernote is where I keep the details I need to reference later, linked to the concepts they belong to so they’re easy to find whenever and wherever I need.”

Aside from Evernote, Patrick also uses Curio on the Mac (an Evernote integration partner) and an iPhone which allows him to create diagrams of interconnected thoughts, replicating the way the mind normally wanders from thought to thought.

Patrick’s story is truly an inspiration. With the help of Evernote and other tools and skills, Patrick leads a rich life with his wife of 19 years and three children in Colorado where he is an author and carries out his ministry at Our Lady of the Woods parish in Teller County. You can learn more about his story on his site, which raises awareness about TBI. Also, take a look at his iPhone donation project that provides iPhones to individuals with severe memory loss.

Patrick’s latest project

With help from a community of volunteers, Deacon Patrick’s latest project, Mind Your Head Co-op, is launching in the coming months to provide support for other TBI-afflicted individuals. ‘Mind Your Head Co-op’ is a continuation of Deacon Patrick’s current TBI awareness campaign, Shoot The Moon For Brain Injury, which documents a collective effort to run 1.4 million miles with the goal to raise $100 Million for brain injury research and additionally fund Mind Your head.

“Every brain injury is different and what worked for me might not work for others,” Patrick says. “Medical science is somewhat baffled in terms of treating TBI. ‘Mind Your Head’ will be a resource for people to share their guinea-pig treatments and coping mechanisms with the greater TBI community.”

Through this forum, members can contribute their memory-retrieving techniques and methods, rate and comment on each others’ treatments and ultimately find an approach that works for them – like Evernote did for Deacon Patrick – so that they can, as he puts it, “Enter life as fully as possible.”

Donating Evernote Premium accounts

We’d like to do our small part to help Patrick in his efforts and will be donating 50 Evernote Premium accounts to the Mind Your Head Co-op.

To find out more, please visit: mindyourheadcoop.org

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53 Comments RSS

  • G D Milner

    Absolutely wonderful writeup. Thanks for that, and thanks for the donation. I am sure they’ll use it.

    • jeff s

      Allsuch inspiring people! Im impressed and motivated as i am asurvivor of a very large stroke. Left side paralyzed severe hit to my cognitive abilities. Memory always changing rarely for better but new tools and hard rehab work overcome. I love evernote keep makingit easier to use tyingot to email and office apps ia a great poqerful tool. Tje little the make big differences
      Thx for all of you. Head injury is serious, but you move forward with pwrsistant rehab anda good semse of humor. And cool creative tools like evernote!
      Jeff ,stroke survivor that laighs a lot always heal . Be happy
      Jeff

  • Stephanie Schiffman Marushia

    I use Evernote in a similar manner. I was injured in the Army and the combination of my Neurological conditions and medications I have to take cause me to have a lot of trouble remembering basic things. My entire life is kept in my Evernote Notebooks. Being able to look chronologically, by keyword, or tags makes it so much easier to deal with day to day life; I call Evernote “my brain.” I would be lost without it.

    I make sure that I write down cute things my son says and include pictures from my cell phone in the notes to help refresh my memory or make it more “real” in case the note doesn’t work. It’s so important to me that his childhood isn’t lost because my brain doesn’t work properly and having it on EN means that I don’t have to worry about losing it if something happens to my computer because it synchs automatically.

    It also helps me keep my medical treatments, medications, doctor’s info, etc. organized. It’s very helpful to have the highlights handy when your medical records take up 3 huge folders.

    Thank you for Evernote, I don’t know what I would do without it, it makes a big difference in my life. I use it at least 15 times a day for so many things it would take at least an hour to list them all.

    • Phil Libin

      Stephanie,

      Thank you for your story. I’m very happy that you find Evernote helpful. Please let us know how we can make it better for you.

      • Lisa Bailey

        Loved seeing all this interest in using technology to live with a TBI. My first “prosthetic brain” was a Palm pda; it allowed me to return to work after a severe brain injury. I’ve happily moved on to an Ipod Touch that, along with my Macbook, keeps the details of life manageable and let’s me work effectively with other TBI survivors. I hope everyone will notice Patrick’s mention of using his Mac’s Spotlight search feature. Assistive technology is valuable for cognitive deficits only if it’s use requires minimal steps that flow intuitively. I believe the ultimate combo is Mac + Evernote + (hopefully) Iphone. Like Stephanie, these have become such a part of my life, I could go on forever…

        Evernote folks should note (ha!) that our company is trying out the application in our work with TBI survivors; we’re very happy it’s there…thanks!

      • Len

        Ihave had TBI since 1994. never heard of evernote before.Ihave anger management issues well.any techniques would be helpful.

  • Andy M

    Awesome story! Love Evernote.

  • Angus Neil

    Glad to see Evernote donating premium accounts – perhaps you could enable Premium subscribers to ‘contribute’ via an optional donation to help fund further charitable uses of Evernote? I’d be in when I next renew…..

  • Janice Russell, CPO-CD

    As a Professional Organizer and Organizer Coach who works with clients with TBI and related challenges, I really appreciate Patrick and Stephanie sharing their stories. I am always looking for tools to help my clients get and stay organized. Thanks!

  • Karl Marble

    Great article about Deacon Patrick and the added bonus of reading Stephanie’s story. I’m starting to do consulting on adaptive technologies for special education and this shows how Evernote can really shine in helping with memory and executive function.

  • Saskia

    I can very much identify with Patrick & the way he uses technology to support his life. I don’t have anything quite as serious as his condition, but I do have an (as yet undiagnosed) impairment that affects my memory & some other cognitive functions which I compensate for a great deal using technology. Some of us really need an “external brain” like Evernote, to make up for the lack of functionality in our internal one!

    • Andrew Sinkov

      Really happy to hear that Evernote is about to help.

    • Jeremy Mills

      I’m with you! I use Evernote, and other technological things because I can just remember things easier. Maybe that is just the way that both you and I have in common Saskia.

  • Alex

    This is how and why I use Evernote, though my head injury is less severe (literally a mild traumatic brain injury or mTBI).

    Alex.

  • SEO

    Wow this is a truly unique inspirational story

    I did not know anything about evernote until i found this article by mistake. I guess it was my lucky day :)

  • wendy

    i’ve been struggling with my tbi for 11 years now and this is the first i’ve heard of this. will look into it, but on first look i find myself intimidated by the amount of random info. i used to be a super organized person but since the tbi i haven’t been able to find a system that works for me at all.

    • Deacon Patrick

      I mostly view Evernote as one big bucket and make sure I put a line or two at the top of every note describing the concepts of that note, or tags or a combo. Then the search takes care of everything else.

    • Deacon Patrick

      Wendy, I forgot to mention (go figure!) that I moderate an email support group for TBI survivors and loved ones which you (and others) may find helpful. It’s: http://health.groups.yahoo.com/group/TBI-Together/

  • Brad

    Another software that you might look at to organize thoughts is Personal Brain at www dot thebrain dot com: http://www.thebrain.com/

    It uses a dynamic mind-mapping technique to connect relationships. I do not work for TheBrain but I have used it since version 2.0 and find it very effective. It’s definitely worth investigating to see if it would be useful to you.

  • rosaline gonzalez

    hats off to Patrick. I cant even imagine living that life.
    But thanks to evernote, there’s some help.

  • hensnight murdermystery

    Thanks for sharing the story. Evernote indeed is a lot of help. Let’s spread the word to everyone!

  • Lisa

    What a nice story! I love reading these “how folks use Evernote” stories – better than just the typical “here’s what we’ve patched/fixed this time” news.

    Patrick looks and seems like a cool guy, like someone that everyone would love to know. You’re an inspiration!

  • Tamon Yanagimoto

    This is a great testimony to flexibility and utility of Evernote! Keep the stories coming.

  • terry weakly

    Rest assured, when iPhone OS 4.0 hits, Evernote will be one of my full time background apps!

  • carlos

    I used to have a great IT career until thyroid cancer disrupted my entire system. The thyroid controls an incredible amount of the body’s function, including: metabolism, heart function and brain function. I can no longer do my IT job because I can’t think properly much of the time and the simplest things can literally paralyze me – I’m cognitively aware of what needs to be done but totally incapable of doing it. My long-term memory does not seem to be affected by any of this, but short-term is pretty much gone. I try to use Evernote to remember things but find it difficult to remember to put things in there and then forget to look there when I can’t remember something. Thanks loads for the tip on using Spotlight to access your Evernote memory. I just tried it and it worked! Guess i never noticed the Evernote entries showing up before (or hadn’t searched for something in Evernote).

    It’s good to hear someone else’s story even if the cause of the problem is different. It’s easy to forget (hah!) that other people have similar difficulties to overcome.

    • Steve

      This sounds all too familar. I have been battling chronic, persistent headaches and migraines for many years. As an IT developer, I have noticed the same issues with my memory. I thought it was the result of one of the many medications I take daily. However, maybe they should be checking my Thyroid…
      Evernote has been critical in my ability to recall information, especially samples captured while researching issues. Thanks!

  • K B

    I am a bit of a techno-phobe….. and find that I need hands on/ one on one or small group instruction. I also have ADHD- with significant “executive function” deficiencies. Reading Patrick & Stephanie’s experiences- I believe if I could learn to effectively utilize Evernote- it would be extremely helpful.

    Is there anyone in the Dallas/ Ft. Worth area that would be willing to take me on as a paying student ?

    • Stephanie Schiffman Marushia

      K B – I would be happy to walk you through it over the phone if you would like some help. Or just send you an email with the ways I use Evernote and then talk you through setting it up. It comes pretty naturally if you can ask questions as you use it. My email is Learning Inspire at gmail (I can’t write it properly or I will be spammed to death). Contact me if you would like some (free of course) help.

  • John Roach

    Evernote is a handy tool…I have limited hand use (C4 SCI)

    sure beats typing…Thanks

  • Norm D

    Very moving and thoughtful, both the profile and the comments. It must be very inspiring for everyone on the EverNote team to know that you are building a product that makes such a profound difference for your users.

  • Carsten Dreesbach

    That is very cool! This is a real use for software, something that actually helps people in their day-to-day lives. Wish I could say that about something I write sometime – congrats!

  • Steven

    Great work guys! Been an enthusiastic Evernoter for a while, and glad to hear your are supporting people doing good things. Well done.

  • Matt Passell

    I hope this doesn’t sound too tacky, but when I read the title of this post, I immediately thought of the movie Memento ( http://www.imdb.com/title/tt0209144/ ). Guy Pearce’s character “Leonard” would certainly have found Evernote useful.

    I definitely find it very useful. :)

    Thanks!

    • Fabricio Zuccherato

      @Matt Passell, I thought exactly the same thing!!! Evernote is the modern world’s memento :)

  • Kyra

    My daughter (12) has similiar problems from a TBI at age 2. She struggles everyday. We’ve tried dayplanners, but she loses them. Thank you for sharing this story. I am putting Evernote on her Ipod touch 1st thing tomorrow. I have been using Evernote for a few months now for writing and photography projects. I never thought to use it for my daughter!

  • Brian King

    What a great product and glad to hear that it’s beneficial to people who have sustained a traumatic brain injury! It got me thinking about how technology and can help this community.

    Check out http://www.brainline.org, it’s a great resource for pulling together all the disparate resources on TBI that are out there. We’re also on Facebook and Twitter from there.

    Would love to hear more about other people who use your technology to cope with their injuries! The curio integration is a perfect match for this community as well.

  • Ceal

    Interested to know more about how it integrates with ‘Personal Brain’ and BusyCal. Also, any more inspirational tales out there in relation to Adult ADD?? Thanks.

  • jacobian

    well this is just so heart-breaking.but now we know that evernote is quite useful.

  • Gino

    As a software engineer for over 30 years, my job has become more and more complicated. To add to the complexity, I have Bipolar Disorder, which causes shifts in mood and thinking. Furthermore, the medication I take acts like a “memory reset” roughly every 4 doses – that’s half a day.

    I have used PDA’s for years to help remember things, and depend on their alarms to get me to meetings, etc. When got my iPod Touch, I needed a better way to get things in and out of it. Evernote was the answer. I have a lot of complicated data stored in there with photos, etc. I love that I could put spreadsheets in there too. Because of the “cloud” synching, I can get my stuff into my PC too.

    The name of the game is to use whatever tools you can to organize your life, and don’t give up!
    Gino

  • steven obrien

    I understand everything he’s going through after having returned from Iraq with a TBI as well and I also use evernote for day to day memory tasks as well as for my medication reminders.

  • Ginger Campbell, MD

    I recently interviewed Dr. Whitehouse about Alzheimer’s on my Brain Science Podcast. We reflected on the need for tools to help dementia patients use technology.

    When I was editing the interview I couldn’t help thinking that Evernote would be the perfect tool if we could figure out a way to get to patients and their families.

  • Gordon Gaines

    I also have memory problems from a bicycle accident I had with a car when I was 10 or 12 years old, I have always had to have some way to keep my life together. I’m still learning to use Evernote but I’m working on it and learning everything I can through articles like this one.

  • Amanda

    Wow, great post. I am going to pass this along to my dad who is starting to “forget” things. He isn’t too techy, but I am sure with a bit of help, this would be very useful to him.

  • Barbara Ames

    I had a stroke 8 years ago, and have come to rely on my computer (and Evernote) to “replace” the brain cells that were damaged. I am blessed to have recovered so much, but I joke now that I used to have 3 or 4 gigs of RAM in my brain before the stroke, but now I have more like 512MB or less :) It is my best analogy for my stroke: I can still think as well as I used to, but the more things I have to juggle in my mind or the more complicated the task, the slower my brain seems to work, until I “lock up” and have to “reboot”. Thank heavens for my computer and Evernote !

  • Bill Goodwin

    This is INCREDIBLE.

    18 months ago, my father had a devastating heart attack that nearly crippled his short and medium term memory. Fortunately, he’s still improving, albeit slowly. I have, for more than a year, been trying to get him to embrace Evernote, but it’s been a brutal process.

    Recently, he’s really started to adopt it and it’s already had a dramatic impact on his life. He’s just started journaling and doing some basic tagging…if I could only convince him to embrace it entirely, his life would be transformed. I’ll definitely be in touch with Deacon Patrick to learn more about he integrates this day-to-day. Any other members of the Evernote community who know about similar solutions, I’d desperately like to hear from you.

    Damn. I still can’t believe that someone has really proven this method to work. You don’t know how much hope this gives me…yeah, it’s impossible to articulate, so I’ll stop. Thanks, Evernote, and Deacon Patrick. Looking forward to learning from your experience.

  • Ryan

    I’m glad there is a tool such as Evernote that is able to help so many people. :-)

  • Dodge

    What a great story! I only appreciated the use of Evernote yesterday, but after reading this now, I think Evernote is one of the best apps ever.

  • Deen

    Perhaps the most valuable contribution that anyone can make is making life easier for others (not necessarily in terms of finance but other little little things as well) While medical science try to solve the problem people with TBI have to live normal and any tool that helps them to keep organised should be given its due credit, hats off to evernote and now onwards if anyone complain about memory loss this is what I m going to recommend (thats my little contribution to make their life better). I m sure that the premium account donation would put to good use.
    I just realised the value of a product that I never know existed!

  • NB

    Thank you for this blog post!!! My husband has a TBI and we are trying to find ways for memory compensation instead of a antiquated notebook. The ITouch has been a great purchase.

  • macpug

    I usually see the Evernote blog, but somehow I missed this until today. I loved coming across this post. What Deacon Patrick has done is amazing, and I’ll be checking out his blogs.

    I, too, have been affected by TBI as a result of several concussions while playing sports. Over the past couple of years, I’ve developed seizures and memory issues. Sometimes, the medicines that one has to take for the conditions are worse than the conditions themselves. After having surgery for thyroid cancer, I found myself unemployed for the first time after working for 15 years in the medical field, and several years at Apple.

    I discovered Evernote while trying to find something to help me salvage little pieces of my life so I wouldn’t forget everything. I could look at photos I’d taken at a family event, and not remember being there. I could see pictures of a special vacation, and not remember making the trip. Tags are fantastic, because instead of having way too many folders and having no clue which folder I put things into, I just have a few folders but lots of tags. That makes it much easier to find things.

    With Evernote, I can add everything into it. I add business cards and take photos of them with people I meet (I had the pleasure of meeting Phil at MacWorld and added him, too!), I record meds, events, daily schedules, websites, photos, errand notes, sketches, literally everything. Having access to it on my Macs, my iDevices, and the web ensures that I’ll never be away from it when I need it. Evernote is my peripheral brain, and I really don’t know what I would do without it.

    Largely thru using Evernote, and with the encouragement of a good friend, I started working with a software company almost a year ago providing online customer support. There’s no way I would be able to do this without Evernote. It’s quite amazing since my doctors didn’t think I would ever be able to work again.

    Words cannot express the self-worth that I have because I am able to work. There are times when I feel like I have to work ten times harder to produce half as much as a co-worker, but you know what? It’s totally worth it, because it’s one more part of me that I’m still able to hold on to, and one more thing that I can do without relying on someone else. So thanks, Evernote, for helping me to remember everything, and for giving me my life back.

  • Megan Greenlee

    This is so inspiring! I can’t wait to spread the word further about EVERNOTE.
    I am a professional photographer that is recovering from a TBI (traumatic brain injury from a car accident last Spring). I can’t begin to relay the positive effects that photography and the visual arts and visual applications can do in healing the mind and memory. If you or anyone you know is suffering from a TBI, remember to pick-up a camera and it may not only soothe your brain, but soothe your soul while healing!

  • Jenny Smith

    Hey I am Jenny and my best friend is a TBI survivor. I am trying to contact the owner of this blog to help one of my best friends Doctor named Dr. Ivanhoe is trying to start a Renaissance project to help people with TBI in many ways! She is trying to get a grant from the pepsi refresh project to get this project on the right path. You can read more about it at http://www.refresheverything.com/theivanhoefoundation

    You can help us by voting everyday, and passing on the word.
    Here is what I wrote in my own blog:

    Hey everyone please do me a favor! My best friend who has a TBI from a boating accident and I are rallying for a great cause. It is for my best friends Doctor named dr. Ivanhoe.. She is trying to get enough votes to win money for her cause on Pepsi refresh project. Most of her paitients are low income due to a horrible accident they went through. it is only a few mins of the day everyday this month and you could be helping give money to a deserving cause. The only thing you will loose is only mins a day, so it is a win win situation Vote and spread the word. Feel free to post the website and anything useful on your fb, myspace, twitter, webpage, send info to work buddies, church buddies, and such to help us spread the word. Go to http://www.refresheverything.com/theivanhoefoundation
    it explains what she wanted to do. Trust me it is a worthy cause *vote everyday* and *spread the word* thanks guys!

    If you can post a blog for us we would be so grateful! We need a lot of votes and support from everyone! God bless and thank you so much!

  • Lise

    I heard something about evernote, and downloaded it to the iTouch. However, would it be easier to use on an iPhone, when there’s more consistent internet access? (still need to dive in and educate myself, so I can show my TBI husband how it works) I’m thinking of buying a refurb iPhone 3G, but don’t have any time to research this item. Help?

    thanks for any advice!
    Lise Neer
    Denver, CO