Journal With Me | Creating an ALS Awareness Page in my Bullet Journal + My Story

May is ALS Awareness Month. I am finally ready to share my story and to help educate people about this devastating disease. I'm donating 100% of the proceeds of this video to ALS Therapy Development Institute. Please consider clicking the donate button as well. We need a cure.
Products Used:
Archer & Olive Journal and note pad (10% off with code PWB10)
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Tombow Monoadhesive roller: Michaels- bit.ly/3r8mtiC Amazon- amzn.to/2qB2b0S
Archer and Olive Acrylograph Pens (use code PWB10 for 10% off your purchase): bit.ly/2L4pM7N
10 piece grid variety washi tape set (use code Bumble10 for 10% off): bit.ly/3bzfc3i
Muji pens .38: amzn.to/2OJxeUb
Sakura White jelly roll pen: amzn.to/2Ex9jpa
Arteza scissors: arteza.com/?ut...
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Joann:
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Target:
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The Washi Tape Shop (10% off with code BUMBLE10)
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Rongrong DeVoe Illustration (10% off with code BUMBLE10)
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Live Love Posh (10% off with code BUMBLE10):
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Planything:
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OTHER FUN STUFF I LIKE:
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-Try Home Chef meal kits! It has me excited about cooking again! www.homechef.c...
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Disclosure: I only recommend products I would use myself and all opinions expressed here are my own. This post may contain affiliate links that at no additional cost to you, I may earn a small commission. I am also a participant in the Amazon Services LLC Associates Program, an affiliate advertising program designed to provide a means for us to earn fees by linking to Amazon.com and affiliated sites. I get a very small percentage of the sale if you click the links above.
As an official Happy Planner Squad Mentor, I receive select product samples at no cost, and may earn a small commission for sales generated by my affiliate links.
Intro music: Wander
Musician: @iksonofficial
/ ikson
#ALS #ALSAwareness #bulletjournaling

[@evelynmuniz1089]

My brother-in-law had ALS. He was diagnosed at 50 and passed 10 years later. My sister quit her teaching job and became his full-time caregiver. Our entire family pulled resources to help anyway we could. It is such a devastating disease. It broke our hearts to see him go through this. He is missed everyday.

[@BarbaraMartinez-df6zr]

What a beautiful spread, Mary Ellen. Thank you for bringing awareness to this inhumane disease. I lost my dad to ALS on July 4, 2009 after being diagnosed almost two years prior. Caregiving for him was the hardest, yet the most rewarding thing for me to do for him. Watching him die from respiratory failure was the worst thing I’ve ever endured. We have to find beauty, strength, and positivity in order to survive as We still live with ALS. We are the survivors of ALS. We are resilient. You have shown your resilience through your creativity and beauty. Thank you for sharing your experience.

[@KatieReadsKoziesAndMore]

Thank you, Mary Ellen. A coworker’s husband was diagnosed with ALS about a year before I began working with her. He lived slightly over five years and his demise was grim. My friend had to work to keep his health insurance going. This meant she had to leave him in the care of his elderly father during the day. I was not privileged to meet him, but I saw the pain in his wife’s eyes every-time he lost another function. It was extremely hard for her to leave him, but they needed the insurance. I started watching you when Daniel was still alive. Your strength and courage amazed me. This is now my favorite spread you have ever done. It is as beautiful as ALS is brutal. Thank you for the reminder. And for the opportunity to help fight this disease. Respect and love, Katie.

[@PlanningwithBumble]

Thanks Katie. I actually started my Instagram while Daniel was alive but I didn't start this youtube channel until a month after he passed away. I know he would think what I am doing is really cool. Wish I could tell him about it!

[@KatieReadsKoziesAndMore]

@@PlanningwithBumble Maybe I saw you on Instagram back then? I’m sure he would be VERY proud of you.

[@magdaherman5033]

I work as a CNA on the neuro unit and I meet people every week with ALS. It a horribla disease , not just for what it does to the patient, but for what it does to all the people around the patient. Thank you for talking about this.

[@monicarodriguez3935]

My dad was diagnosed with ALS in 1994 and fought for 11 years, passing away in 2005. My aunt, his sister battled ALS for 5 years, passing away in ‘98. My great-uncle (dads uncle) passed away in 2017, just a year after being diagnosed. I’m so sorry that it has touched the lives of so many of us 💔, that’s one thing I hate having in common with people! I love your awareness spread and think you did a great job simplifying what it is and what it does! Love and hugs to all of those who have lost a loved one to this terrible disease!

[@PlanningwithBumble]

So sorry you’ve been affected by it!

[@SparklePlansADayAtaTime]

🤗This was a tough video for me to watch but an important one. My Mom was diagnosed with ALS after months of health issues and ending up at the ER on a breathing tube. I move across country out of necessity to care for her and my aged grandmother (both have passed). I never really got over that experience and without my own family it hit me hard. Thanks MaryEllen for bringing this disease to light and prayers to you and your continued healing.

[@PlanningwithBumble]

I'm so sorry you have a personal experience with the disease.

[@robintaylor3705]

Thank you, Mary Ellen, for this video. One of my dear friends has ALS, his diagnosis came about 2 years ago now. Breaks my heart whenever I see him. 😢I don’t know what to say and I certainly don’t know what to do except pray.

[@starburst2080]

As I nurse who has taken care of patients with ALS, thank you for sharing your story and raising awareness.

[@sherriechandler6582]

So i have seen this horrible disease in action too. My ex’s uncle had it and my husband’s step mother also died from it. It is so sad and devastating to watch them go through it. My heart hurts for you too Mary Ellen and what you went and are currently going through. Stay strong and know that Daniel is always near and watching over you.

[@alias065]

So glad that you made this video. I know it was painful for you. My husband’s grandmother passed away from ALS. Such a devastating disease.

[@lizmallett6389]

I learned so much from your video. Thank you for using your gifts of creativity and compassion even when it’s difficult. I’m new to the planner world and your videos have made me feel like part of the planner family so often!! ❤

[@SweetDreamsofParis]

Mary Ellen, thank you for raising awareness and for your donations! This was heartbreaking to hear about, but important information to know.❤️❤️❤️

[@ReadBrucey]

My father in law had fast moving ALS. He lasted only about a year- so hard to watch! He was older but still a strong healthy man until he was hit with this.

[@kaylaaguilar2621]

Mary Ellen my heart truly goes out to you and yalls family. You are one of the strongest people I know you have been through so much. Thank you for spreading awareness because I had no idea about ALS and it is truly truly heart breaking. Continued prayers for you and remember there are so many of us who love you and you make so many of our days and I truly thank you for being YOU!! You're one of a kind 💛💛

[@PlanningwithBumble]

I'm strong because I have no other choice. Thank you.

[@LeenerAnn]

((((Mary Ellen)))), thank you so much for sharing not just the medical information regarding ALS, but your own personal experience from it. My heart reaches out to you and the extended family that grieve such a loss of.what sounds like an incredible human being. Thank you for being vulnerable in sharing. God bless you 💛

[@jamiehintson5325]

So sorry for your loss. Such a devastating disease. I know you did a wonderful job taking care of your husband.

[@PlanningwithBumble]

I did the best I could. It wasn't easy. Caregivers are my heroes.

[@MFackCoaching]

You are always stronger than your mind allows you to believe!

[@aprilandbella6738]

Mary Ellen I knew your story and your wonderful husbands struggle. Thought I could watch this without tears. Could not. your gift to him was so good as a caregiver. people do not realize how much a disease can affect the person who is side by side in the struggle. The heart ache in his mind must have been so heavy. The ache in you was so strong but you put it as a back burner so do what you must do , what you want to do, never knowing that was your destiny. I am surprised you were able to do this now. You have lived way to much life so young. Thank heaven you have been sprinkled throughout with love and pride of your family. I hesitate to say God too here. Being a believer is so hard when you witness real peoples pain. So much loss ...... I really do think you are handling all this life like a strong gracious person. My prayer is that your Aunt has caregiver like your sweet husband had. That is definitely the hardest job any one will ever do. Thank you for sharing a link to a responsible group. That is also so hard to do.

[@PlanningwithBumble]

Thank you so much. I’m only strong because I have no choice.

[@aliciarowland830]

Thank you for sharing your story and bringing more awareness to this awful disease. My dad was diagnosed in late 2003. The doctors sealed his fate and said he wouldn't make it two years, but he did. And then 5 and so on. He is still living and we are all thankful for that, but the watching a loved one slowly fade away is heart breaking. My prayers go out to all people affected in one way or another by ALS.

[@PlanningwithBumble]

I’m so sorry your family has been affected by this.

[@rhondacesana2221]

My heart broke to hear your story. I pray sharing this will help you heal in the way only God can heal. Thank you for your bravery and strength, and your sweet heart that cares so much.

[@southernplanner-june]

Hi Mary Ellen, thank you so much for sharing your story. I have been watching you PWMs for a few months now and have heard you speak about your grief. My daughter-in-law was diagnosed a few months ago with ALS and this news has been devastating for all family members. My understanding is that the disease can start from the bottom up affecting legs and mobility first or from the top down affecting speech, swallowing, upper body strength. Her ALS started from the top down. She has three teenagers and I can't imagine what these three kids will have to go through and witness in the next year or so. She had the symptoms for about a year while the doctors were completing all the testing and she is approaching the end of her second year. We live about 3,000 miles apart and I wish I knew now how I can be a help to the kids especially as the disease progresses. I think they are all in the denial stage of grieving. I am sorry for this loss for you and your family members and really appreciate your courage to tell your story. Respectfully, June.

[@PlanningwithBumble]

I’m so very sorry. It’s heartbreaking. ALS can start in so many different ways. Daniel didn’t ever lose his speech or swallowing all the way. His started with his back muscles and breathing, then progressed to hands, then went on from there. I wish this disease didn’t exist, and I’m sorry your family is affected by it

[@southernplanner-june]

@@PlanningwithBumble Thank you for your kind thoughts. I am sorry it affected you and your family. Thanks so much for the video. It was a great thing you did.

[@clairdeluna70]

Thank you, Mary Ellen. I knew another wonderful man who passed from ALS, not so long after diagnosis. Bless you for reminding us of ALS.

[@planittilyoumakeit]

SO SORRY FOR YOUR LOSS. THANK YOU ONCE AGAIN FOR SHOWING US THAT WE CAN USE ANY GIFT WE HAVE TO BRING CHANGE INTO THE WORLD! ❤️

[@plannerbabe_jb9064]

I learned a lot from your video.❤️ a high school classmate of mine died from ALS last year. It hit her hard and swift. I’m so sorry you had to go through this experience.

[@PensAndAPlan]

Heartbreaking! Such a devastating disease! You did amazing shedding light on it and explaining it to us. Praying for all those affected and their families. 💙

[@lisas8542]

Thanks for sharing your story. I knew a little about ALS but learned a lot. As always, hugs to you. ❤❤❤❤❤

[@pine_and_pen]

Very beautiful and informative spread. Thank you so much for sharing your story and I am very sorry for your loss ❤️

[@lorinousen4982]

What a great video! I have had two close family members die from ALS. It is a terrible disease. Thank you for sharing.

[@PlanningwithBumble]

I'm so sorry

[@LynnLBE]

Aww I extend my sympathies to you. I cannot imagine. I’m sending you love…💔🦋💚

[@PlanningwithBumble]

❤️

[@TeamM334]

Thank you for making this spread and bringing awareness to this devastating disease. My brother-in-law passed away from ALS. It is a horrific way to die, to know and be aware of everything that is happening to you is something I wouldn't wish on anyone. THANK YOU again Mary Ellen for shining a light on ALS.

[@thoughtsofhamp8692]

Hi there...God Bless the dead. Thank u for sharing ur story. May God bless ALL that hv ALS. I would love to donate; however, I am financially challenged right now. Just wanted u to know that I appreciate u for spreading the awareness about ALS. Ur videos are AWESOME!!

[@Parkitloveit]

I don’t know anyone who’s had it, but I hope they can find a cure soon. 🍀🍀🍀

[@momof226]

So sorry to hear this! I personally do not know or have any one that has/or had ALS. I do know from research it is a very horrible disease to have.

[@LynnLBE]

I really love your page too❗️. Sure love the reds.

[@valeriephelps3939]

I lost a classmate at 50 years old My husband lost a woman that was like his mom and now a former police officer sgt of my husband is suffering. Its a horrible disease. Breaks my heart.

[@Olduvai9]

Thank you for this, and love to you and To Daniel.

[@peggyvandewater6092]

Thank you. Im so sorry you had to experience this. You did a great job explaining everything. My thoughts and prayers are always with you. 💜

[@bubblepuffs]

What a beautiful tribute to your late husband and everyone else who is affected by this horrible disease. Thank you for sharing your story and for spreading awareness ❤️

[@TNT66762]

We are currently going through this with my cousin. She was diagnosed last year after a grueling year of tests. Within the last month, she has lost all function of both arms, the ability to eat/drink other than through a feeding tube, and is wheelchair bound. Thank you for spreading this information to the masses of people who may not have known. 🙌

[@PlanningwithBumble]

I'm so sorry this is affecting your family.

[@mechudoba]

Thank you for educating me on this.

[@gidgetgetscrafty]

💕💕💕 My grandmother's sister had ALS. I was pretty young when she died. My memory of her is her drawing me pictures I requested, for me to color. Later, when she could no longer move much, she had a board with the alphabet to point with her toe.

[@carianderson2254]

My great uncle had ALS and was lucky to live relatively long after diagnosis but it’s just heart breaking and I am so sorry for what you went through with your late husband. He seemed like such an awesome person. ♥️♥️♥️

[@dr.janaleewagner1177]

What a great way to spread awareness! I have had many ALS patients. It is so sad to see them trapped in their bodies. Tgere are high levels of depression and suicidal ideation with ALS patients. I'm glad I was able to make their's and their families' lives easier in a very small way.

[@PlanningwithBumble]

What you do makes a big difference. We had a great bunch of doctors and nurses along the way and they all made such a difference. Thank you.

[@buckeyethor]

Thanks for posting! Very informative.

[@cack121]

I lost one of my very best friends to ALS 5 years ago and a cousin at the age of 28, 30years ago. Terrible disease. So sorry for your loss

[@meghanhurtado1147]

Thank you for sharing your story ❤️

[@horseygirl645]

So heartbreaking. Thank you for speaking out about this horrible disease.

[@tinarowe9336]

My heart goes out to you!!! Hoping and praying for a cure. Love the page!!!

[@stephanieblake4618]

It is a devastating disease. Lost one close friend to it & now know of a young woman that was kust diagnosed with it. Just donated to her ALS page.

[@symonerhein4385]

Thank you for using your talent and platform to educate us all about such an important cause!

[@marysoldiaz6225]

Thank you for sharing!!! I think you learn about diseases like this one when you are directly affected which can be so overwhelming. ❤️❤️❤️❤️ I haven’t lost anyone to ALS but it seems to be devastating disease.

[@tiffanyt.t.w.8285]

I’m so sorry for your loss. About 14 years ago I had a lot of the same symptoms of ALS, the doctors were trying to figure it out , they did a EMG and told all of what I didn’t have which included ALS and all I could do at that moment was cry the hardest I’ve ever cried. It was like all the worry and how scared I was just came out at that point. They couldn’t find out 2hat it was so they just said it’s some kind of neuromuscular disease. I’ve been struggling to figure out what the hell it is but the only thing closest to my symptoms that I found was myasthenia gravies. They ran tests but the main test they needed to diagnose couldn’t be done bc I would’ve had to not take my muscle relaxer for a week, and that is impossible for me to do bc of all the cramp i n g and spasms I get bc of my back. I have degenerative disc ‘s disease among other things. So I couldn’t get the test that could give me answers which really sucks !!! I’ve had Lupus for 24 yrs. I was 15 yrs old when I found out. I have many other diseases stemming from lupus and others that have nothing t do with lupus. I don’t have what your husband had , in some ways I do feel like I at least understand the scared, tired of all the appointments, hospital stays, meds part of it. It is A LOT to deal with and you are an amazing person for being as strong as you were for him and taking good care of him with the time he had left. I’m sure he appreciated it and is watching over you now, helping to protect you and your children. Btw I love the ALS page you made !!! 💜💜💜

[@PlanningwithBumble]

Believe it or not I have almost all of the symptoms too, currently. It is very scary. I’ve been through many tests and they say I don’t have it. But they don’t know what it is.

[@tiffanyt.t.w.8285]

@@PlanningwithBumble I’m so sorry, it really sucks not knowing what it is. I hope someone can figure it out for you! Good luck & Take care. 💜💜💜

[@shelly3251]

Thank you for bringing awareness to this ALS and telling your story. Wonderful spread.

[@equestrianesse]

Liking this video because I appreciate you sharing something so personal in order to help others. ❤️

[@audreygrabowski193]

Great info!

[@meloncitacrafts]

Thank you for sharing your story and raising awareness for this disease. I hope you are taking care of yourself and sending much love 🧡

[@tompolek2972]

🙌 🙌 🙌 🙌 🙌 🙌 🙌

[@PlanningwithBumble]

❤️❤️❤️

[@KCNeill18]

Thank you for sharing your story

[@christyb7455]

You’re a wonderful person❤️

[@threasashelby1668]

Thank you for this!!! My father has just been diagnosed with ALS. 😢

[@PlanningwithBumble]

I’m so sorry. 😢

[@threasashelby1668]

@@PlanningwithBumble thank you. We are going through the VA and they have been great so far as to getting what we need for him and the house. Whatever it takes for him to keep his independence as long as he can and as comfortable as he can. ❤️

[@PlanningwithBumble]

@@threasashelby1668 Yes, the VA was INCREDIBLY helpful. Make sure you do some research so you can be sure to get all the benefits you are entitled to. I will always be so grateful that the VA helped us so much.

[@PlanningwithBumble]

If you have any questions about it you can always DM me or email and I could try to help.

[@threasashelby1668]

@@PlanningwithBumble Thank you again so much for that. I know it will be a long road ahead of us so I just might borrow you or should I say borrow your ear/shoulder some time. 🌸

[@debramurphy4295]

Thank you for showing this vedio. I lost my best friend it was not good she was a owner editor of a small paper.

[@PlanningwithBumble]

I’m so sorry

[@brhousel]

💜💜💜

[@caycollie8284]

A horrible illness. So tragic. 🙏🏻🙏🏻🙏🏻

[@kendrathomas3519]

We lost cousin to ALS just short of a year ago. It was and is a devastating disease to watch. He was a strong firefighter only 56 years old. I understand the devastation of this disease. My heart is with you.

[@debrakeesee9414]

❤🙏

[@sarahlefton9007]

My uncle died from this. He suffered for year's before he passed away. He got it from a bad reaction from the flu shot. 5 people went into the hospital with the same thing from the same source on the same day. My uncle was the only one that left the icu. Stuck in bed on a Trac with a feeding tube for the remainder of his life. Not way to live at all.

[@PlanningwithBumble]

You can't get ALS from a flu shot. I'm sorry for your loss

[@sarahlefton9007]

@@PlanningwithBumble Your right. Sorry I was wrong he had Gbs.

[@princessrockplanner]

I am going to send you a email. You really touched me.

[@emilyrogers3271]

Very sad

[@sharonmcallister7443]

This is the first time I have ever heard ALS described. You have really done a great job informing us and raising awareness, this sounds like an absolute nightmare of a disease. I'm terribly sorry for the loss and pain this awful disease has caused. Your so brave to share this experience with everyone. ❤‍🩹❤