Tag Archives: ALS

Advice

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A few months ago I was asked to reach out to a peer, whose mother had recently been  diagnosed with ALS.  At first I wasn’t sure what to say except “ALS sucks, but I’m here if you want to talk.” She told me a little bit about her mother’s experience, and it sounded very different my own mother’s experience. I wasn’t sure how to relate to her story, but the more I thought about it, I realized her pain was the same as my own.  She had the same fears, and felt the same helplessness that I had felt when my mom was first diagnosed.

If I had to give advice to someone dealing with a close friend or family members ALS diagnosis it would be this…

  • Spend time with them! They are probably feeling just as alone and helpless as you are.  Help them continue to keep living their life as “normally”as possible. Most importantly, just be there for them.
  • Find a support group.  When my mom was first diagnosed with ALS I found a group on facebook called kids of ALS or KALS, and reading other people’s stories helped me feel a lot less alone. Just talking to friends wasn’t as helpful to me as knowing that the people I was talking to had gone through something similar.
  • Get involved.  I found myself going a little stir crazy.  I wanted to spread awareness to the disease, so I got involved with the ALS Association, and the ALS TDI.  Volunteering at events, and participating in walks in my area, helped me feel like I was “making a difference” in some small way.  It made me feel less helpless.
  • Take each day as it comes.  Each day can bring new challenges.  It’s okay to be sad, and it’s okay to be afraid of the unknown, but take a deep breath and remember that you can get through this.  You are not alone.

 

Repost

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My Mom got a new computer a few months ago with updated technology, and I haven’t heard from her since.  Family members have told me that she has been having trouble sending and receiving text messages. It has been weird going from getting multiple texts from her a day, to not hearing from her at all in months.  I have reached out to her via text message many times, but she hasn’t replied to me. I know she isn’t ignoring me on purpose, but it still makes me a little sad, because I miss her.

I texted my Mom yesterday morning “Happy Mother’s Day,” but she didn’t reply.  My brother tried to FaceTime with me later in the day when he was with Mom, but I was at work and unfortunately couldn’t answer the call. When I got home from work later that night, my husband told me that he texted my Mom “Happy Mother’s Day” and she replied asking “Who is this?” I was so mad! At least she replied to him at all.  Why didn’t she reply to me? Maybe since my brother was with her, they talked about me saying “Happy Mother’s Day” so she felt like she didn’t need to reply to my text.  Maybe she was tired of responding to everyone else’s “Happy Mother’s Day” exclamations all day. Or maybe she was just plain tired.  Whatever the reason, it doesn’t really matter. I just miss talking to her.

It seemed fitting to repost this poem today, the day after Mother’s Day, when I am missing my Mom, and haven’t been able to get in touch with her in so long.  This was one of the first posts I ever posted on this blog. I originally wrote it 10 years ago, about a year after my Mom was first diagnosed with ALS.  She could no longer deny that her Chronic Lyme Disease had become something else entirely. ALS was crippling her a little more everyday.  As much as she tried to retain her mental toughness, she was both shocked and saddened by her body’s rapid unfair betrayal.

 

Have You Seen My Mother?

Powerful blue eyes, a giant heart, and confidence galore.

She has disappeared, my Mother, is who I’m looking for.

The woman in her place,
 she yells a lot, and cries, and cries, and cries.

She is overcome by a terrible disease, for which there is no cure.

She cannot walk, her muscles weaken, she can barely even speak.

When I look at her my teeth clench, and my stiff eyebrows tweak.

Where has she gone? this woman that I love, the woman I call Mother.

Her helpless corpse remains,

While her mind is unencumbered.

Her heart can only take so much,
 her contagious confidence dwindles.

She unwillingly becomes a distant stranger

Whom I deeply love, and deny all of my anger.

I look at her, each and every day,
 and pray Mother will soon return.

Sometimes she visits, just for a minute, 
then disappears without a word.

I miss her hugs, her kisses, her unmistakable smile.

Her laughter and unwavering pride, help me stay strong all the while.

I can’t remember many things, that I wish I could.

I took my Mother for granted, in a way I never should.

As my memories begin to fade away

So does she, and what a shame.

I miss her more than words can say,

I hope that she’ll come back today.

Copyright ©2006 E Miller Thompson

Love & Reflection

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Tonight was one of those nights where it hit me out of no where and I just stayed up and cried.  I miss my mom so much, and I can’t stop thinking about all of the things she never taught me, and will never get the chance to do with me.  Jeff (my husband) and I were just talking about ways that we are similar to our parents the other day, and when I brought up the “fun” side of my mom, he said ” I wish so much that I could have known her before” and I really do too.

I really REALLY miss her, and the more time that passes, I feel like more and more of her is lost.  I can’t remember so many things about her that I wish I could.  It has been 9 and 1/2 years since her diagnosis, and it hasn’t gotten any easier.  It has only gotten more and more difficult.  For a while it seemed stagnant, but these days it just feels hard.  I miss her so much, I miss who she was, and thinking about all the fun that we would have together today if she wasn’t paralyzed makes me so incredibly sad.

Growing up I was not close to my mom, but I always had hope that when I grew up, something miraculous would happen, and we would be best friends. Now that I am “grown up” I don’t know about “best friends” but I still think we would have a lot of fun together.

I almost forgot what if felt like to always have my mom defending me.  I miss her encouragement. I miss her hugs, and I even miss being mad at her.  I know she wasn’t the worlds best mom, but growing up, she was to me.  I don’t know what tomorrow holds for me, or for my mom, but I pray that every morning we wake up, we are blessed with happiness and joy.

Guilt

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This morning I think I had my first real panic attack.  My younger sister called me, upset, and told me that my mom was on her way to the Hospital.  It was a plan we had put in place, but now it was ACTUALLY happening. My moms caregivers worked for at least a month without pay, and they finally left, forever.  There was some issue with insurance, therefore no facility would take my mom just yet.  Without her caregivers, or a care facility, we needed a plan, and that plan was to have her taken care of at the hospital while we tried to find her a new place to live with care that her insurance would fully cover.

My sister was upset because usually, one of my moms caregivers would travel with her in the ambulance, but this time she was all alone.  My sister told my dad that he should go in the ambulance with mom but all he did was scream at her in front of the paramedics.  He hates hospitals, and has a fear of needles.  I think he was just plain terrified, and he makes pretty awful decisions when he’s afraid. Without her computer, my mom can’t communicate.  She can blink once for “yes”, and twice for “no”, but that isn’t really communicating. No offense to the Hospital, or any Hospital for that matter, but she usually gets pretty shtty, not attentive care whenever she is there.  They simply either don’t have the experience with ALS patients, or the time to handle all of her issues.  There are also certain medications that they switch her to, that are different from what she is used to taking, and it messes up her whole system.

This morning, I tried to convince myself that everything was in God’s hands, and that it was all okay, but I couldn’t stop thinking about the awful care my mom was getting at the Hospital, or how confusing and frustrating everything must have been for her not being able to communicate and being all alone. I pulled into my parking lot at work and started bawling.  I felt so much guilt about not being home.  I should have been there, I should have gotten in the ambulance with my mom.  I should have been there to be the one that my dad yelled at, or to defend my younger sister.  I couldn’t help feeling like I should have been there.  I felt almost like I was about to faint, except without the dizziness.  Eventually I pulled myself together (after many deep breaths) and went on to work the entirety of my shift.

I asked my sister later on in the day, to let me know if she had any news. The only thing she told me was that my mom had some bad bed sores, and she was admitted to the ICU. I hate not knowing what is going to happen. If I should fly home or not.  Wondering if moving so far away in the first place was a horrible mistake.   I wish I could be there for my younger siblings when they are so confused and upset. I mean physically there, to hug, or punch, or take the brunt of my dads anger. I feel so incredibly guilty that I am so far away and removed from the situation.  I feel guilty feeling “okay” knowing that my siblings are not, and that my mom is not.

ALS Ice Bucket Challenge

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Someone said to me the other day, that being against the Ice bucket challenge, is like being against kids with lemonade stands. Yes everyone is doing it, and yes it’s starting to drive people crazy.  It’s not original anymore, and people are tired of it, but that is sort of the point.  For people to challenge each other, and make the videos and awareness go viral by everyone all doing the same thing. No matter what your point of view is, the challenge has helped ALS raise a ton of awareness, and money.  Some people argue, that there are other diseases, and causes that need attention and money too.  No one is denying that.  If ALS gets the most amount of donations than any other charity, or cause this year, that would be amazing.  What is the big deal!? it is ONE year.  

The challenge is simply meant to be a fun way to help raise awareness for ALS, and hopefully raise funds that go towards finding a treatment, and eventually a cure for this disease. I am honestly saddened by all of the people I know, or that I have seen on facebook saying that the  ALS ice bucket challenge, is really overdone, and people are just doing it to make themselves look good, or because it’s the “cool” thing to do right now.  Maybe that is true, maybe it’s not, but I still don’t understand how anyone could be against raising awareness, which leads to raising money, for a disease that REALLY needs it.

I don’t care if people actually do the challenge or not. If you don’t want to, you don’t have to.  I also don’t think anyone should feel like they have to donate $100. Donating is important, but just donate as much or as little as you want.  As long as people are passing the challenge along, and posting videos of themselves dumping ice on their heads, ALS is raising awareness and to me that is the most important thing.  People are talking about ALS, and hopefully doing some research to learn more about how this disease affects people. You don’t have to be a fan of the challenge or participate in it, but you definitely should not be against it. 

 

If you are interested in donating, this is a link to my personal fundraising page http://webct.alsa.org/site/TR/Walks/Connecticut?px=1247883&pg=personal&fr_id=10120#.U_TiGIBdWrw

Other ALS organizations that I support and love and recommend donating to are, Project ALS and the ALS TDI 

No White Flags

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I love the  Team Gleason  motto “No White Flags.”  By the way that my mom continues to live her life, 8 years after her initial ALS diagnosis, she obviously feels the same.  ALS is a neurodegenerative disease, that attacks the motor neurons in the brain, leaving a persons body completely paralyzed, while keeping their mind in tact. 

I used to think that people who were diagnosed with ALS, who chose not to fight, were cowards. Or that anyone who was diagnosed with ALS, and decided not to get trached, was taking the easy way out.  But with ALS there is no “easy way out.”  It took me years to understand, and accept, that letting go is not the same as giving up.  

I watched the Steve Gleason special on the NFL channel Tuesday night, and I cried.  I cried because parts of it reminded me of difficult times that I had with my mom.  Times when she fell down, and I wasn’t strong enough to pick her back up. She would lie on the floor and either cry, or laugh at me, because I was crying. 

 Living with such a horrible, crippling disease for over 8 years, is extremely difficult, and brave.  But I also know that if my mom did not have the luxury of living at home in her condition, she probably would not want to live, and she definitely would not wake up smiling. I will never stop fighting for the ALS patients who don’t have that luxury.  The ALS patients who can’t afford to spend (on average) $200,000 a year to provide the care they would need. Everyone diagnosed with ALS deserves a fighting chance, and that is what I’m fighting for.  

*I will be walking with my mom at the Walk to Defeat ALS, in Westport CT on October 20th 2013.  If you want to support my me, my mom, or the CT ALS community, please donate. *

 

That Time

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That time that I can’t remember very well, but also can’t get out of my mind.  It was about 5 or 6 years ago. I was 19 or 20 and living at home. My mom was still walking, barely. She needed to be held up, but she could still sometimes move her legs very slowly.

My parents had just gotten home from being out somewhere, and I was in the kitchen with a close friend that I went to high school with. I don’t think my mom had any caregivers yet, she was still sleeping upstairs in my parents bedroom.  Back then, my dad and younger sister came up with a way to get my mom into her chair, and upstairs as easily as possible, which in reality, was still very difficult. The two of them did it together most of the time, because they were the strongest.

Whenever it came to lifting my mom, I tried not to participate. I had never been very physically strong, and lifting up my moms dead weight was difficult for even my dad to do on his own.  Not to mention the one time I tried to lift my mom out of a chair, but I couldn’t hold her, and she fell to the floor. Of course then, I couldn’t get her up off of the floor on my own, and became even more frustrated. All the while my mom just laughed, but the situation made me feel completely useless.

My dad had been struggling to get my mom inside the house on his own. I heard the garage door fly open, and my mom with her slurred speech, was yelling at my dad. He wasn’t holding her up the right way, or something. He got more and more frustrated as he was trying to get her up one step, and into her chair, that would carry her up the stairs to their bedroom. He yelled for me to come and help him, and even though I was terrified ( I knew I wasn’t strong enough) I ran over quickly. My mom was yelling, or trying to. She was frustrated, and my dad was trying to hold her up, and understand what she was saying, and getting frustrated too. It was the last place I wanted to be at that moment.  I knew that I was next to get yelled at.

I can’t remember exactly what was said, but my dad just started screaming at me. I wasn’t holding my mom the right way, the way my sister did it.  I wasn’t making it easier, I wasn’t being helpful enough, I was useless. I tried to do everything the right way so I could just be done with it, and escape, but I simply was not strong enough, and I was scared. I didn’t want to drop my mom, or be the reason she was uncomfortable, or piss off my dad any more than I already had. Finally my dad just yelled at me some more, and told me to go away since I wasn’t helping. I remember walking back into the kitchen where my friend had been patiently waiting, and just sort of shrugging my shoulders with tears in my eyes, and thinking,  this is my reality, and I was glad that he was there, when I really needed a friend.

Often Awesome

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I have been house sitting and dog sitting for 6 days now, and in my boredom, I spent the past 2 days watching the entire web series called “Often Awesome.” A story about a young 30-year-old man diagnosed with ALS in 2009. It completely blew me away. His mission with his girlfriend, and closest friends, who later formed the “Often Awesome Army” was simply to spread awareness about this disease.  He wanted people to know what ALS is, how it effects people, and that is not just an old persons disease. My mom was only 49 when she diagnosed, and people said that was pretty young.  People as young as 16 have been diagnosed with ALS.

There were parts in the video that were really hard for me to watch, and frustrations people had in dealing with ALS that I could totally relate to.  I look back and wish that someone had documented more of my mom’s life.  Watching how everyone in the community came together in this series, and how people from all over wanted to get involved and help in any way that they could, just blew my mind. People really can surprise you, and bring so much joy to others.

Please watch the series, at least one episode, and spread the word about ALS. Educate yourself and others about what ALS is, and how people are effected by it everyday. Here is a link to the first episode of Often Awesome: http://www.youtube.com/watch?v=COeSNqjReM0

Missing Mommy

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When I was younger, I never would have imagined how much I would need a hug from my mom one day. I mean REALLY need one.  A mom hug is different from any other kind, especially mine. She knew just how long to hug, and just how hard, in any and every situation. Mom hugs are incredibly comforting and reassuring aka, the best feeling EVER. I rarely wanted a hug from my mom when I younger, I liked dealing with things on my own. I would give anything for a hug from my mom right now.

Everything reminds me of her. Whenever something bad happens, something good, something terrifying, I wish she was with me, I wish she could hug me. I want to hear her laugh, make her laugh, dance with her. Sometimes, it makes me so sad to know that none of those things will ever happen again, no matter how much I miss them, or how much I want them to. It often breaks my heart to know that I can text her as often as I want to, but I’ll never hear her voice again. I hate ALS.

I recently told a stranger whose father has ALS and just lost his ability to speak, to hold onto what they still have; A father fighting for his life because he still has people in his life (aka that person) that he loves so much. I am happy that my mom is still here, and that she still wants to be. I am so grateful for her strength and courage.  I use it to inspire myself in times where I could easily fall apart.

It’s so difficult to be reminded every single day, what she has lost, and what I have lost because of her disease.  Missing her like she is gone, when she is still here, but I keep losing pieces of her over time.  It’s the most difficult thing that I have ever had to deal with. I find comfort in knowing that I have an amazing support system in family and friends, and complete strangers, dealing with the same horrific disease all over the world. It is comforting to feel like I am not alone, but a hug from my mom would be a million trillion, gazillion times better.

Imagining a hug from my mom: My eyes gently close as her skinny arms wrap around me. I lean in and rest my head on her shoulders, as she holds me tight and squeezes hard. We both take a deep breath, and she lightens up her squeeze a little. Another deep breath, and in that moment all of my fears, frustrations, sadness, confusion, it’s all gone. My head clears, everything feels quiet. She begins to rock me in her arms, still holding me tightly, for a few minutes, until she can sense I feel better. A cloud of calm comes over me. Then she moves her arms from being wrapped around me, and softly rubs my back for about thirty seconds before completely letting go. I would give ANYTHING to feel that right now. ANYTHING.

Seven Years

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Seven years ago in June, my mom was officially diagnosed with ALS. It’s hard to believe that it’s been seven years. Sometimes I feel like it’s only been one year, and other times it feels like 50. I graduated from high school seven years ago. To me, high school definitely feels like a very very long time ago, without question.  Sometimes I feel like I’m standing still, stuck, or just not going anywhere, but when I think back to high school, I feel like I have definitely accomplished a lot in the past seven years. Not as much as some, but still a lot.

Up until seven years ago, my life was pretty normal.  My family has always been a little crazy/dysfunctional but, I think most families are, in one way or another.  I can’t imagine what my  life would be like if my mom never had ALS. It has changed me so much as a person. I try to remember everyday not to take anything for granted, things my mom can’t do anymore, like talking, swallowing, or walking.  Thinking about all of her strength, as well as her hardships gives me both inspiration and motivation. Motivation to be a better person, to work harder, and to be happy as often as I can.

For the past seven years, my life has basically revolved around my mom having ALS.  Hospital scares, constantly checking my cell phone (just in case) taking care of her at night, waiting for caregivers in the morning, getting involved with fundraising/”the cause”… etc. So much taking care of my mom and my siblings, and my family, so much pressure to always be around, be available, be close by. In 42 days I am moving to California, and everything is about to change. I’ll still email my mom all the time, and my family can always call, skype, or text.  I’ll try my best to stay close, without being here.

I’m going to miss being the first person there when something happens, seeing my moms face at least once a week, watching TV shows with her, I am going to miss so much. But it’s time for me to start my own life. Time to stop worrying ALL the time, and time to start being the person that my amazing mother raised me to be. Time to move forward, not to move on. It’s an exciting time. It’s like graduating high school should have been for me seven years ago. Full of hopes, and full of dreams. I put my life on hold for my mom, and for my family, because I didn’t know how not to. Seven years have gone by, a lot has happened, a lot has changed, and I think I’m ready now…