10 Things To Know about ALS

By | August 22, 2014

I know y’all have all seen the ALS Bucket Challenge. Many of you probably participated in it and I’m so grateful. I’m grateful that something so silly as dumping ice water on your head is what leads to the awareness of one of the most horrible diseases out there. I am thankful for so many people giving money. Can you believe as of yesterday $41.8 Million has been raised? That is something to be thankful for. I’m hopeful that this will get researchers closer to a cure.

My Dad, who passed over into God’s arms, just 40 days after his diagnosis. He had had ALS for years, but due to some medications he was on, the symptoms were masked. He described to me that he was having a hard time walking from the living room to the bathroom, opening bottles, and his breathing was quite labored from just a quick phone conversation.

I’ve never heard fear in my Dad’s voice like the day he called me to tell me. I’ve never heard my dad say that he was terrified. Then, to hear him say that he did not want tubes, medication, monitors, or to even go to the hospital. He knew his fate and he prayed that God would have mercy.

God has a plan for all of us and God’s timing is perfect. My Dad didn’t die alone in his house like we’d all feared. He died in his sleep in the comfort of brother’s house, where the day before they had celebrated Christmas together opening presents and sharing memories. Although, I was on my way to see my Dad flying from Atlanta to DFW when he died and didn’t out till after we’d landed. As badly as it hurt knowing that my plans to see my dad were not going to happen, I had to stop and thank God, because he had answered all of our prayers.

When I start to feel sorry for myself, all I have to do is think about those that are suffering and dying from ALS. I sit there and picture being trapped in my own body unable to talk, move, eat, or breath on my own. It’s quite sobering. Next time you’re thinking that you’ve got all the problems of the world sitting on your shoulders, just stop and imagine life like that…

10 Things To Know About ALS - Education yourself and others.

Here’s a collection of all the posts I’ve written about Dad’s ALS Journey.

Sources for infograph:

9 thoughts on “10 Things To Know about ALS

  1. Stephanie Pass

    What a truly heartbreaking and terrifying disease. I hope with the ice bucket challenge there will be interest in trying to find a cure.

    1. Michelle

      My Aunt was diagnosed a year ago this coming September 25th, to be exact. She was diagnosed on her birthday. A few years back she thought she had ALS. She went to a specialist and he told her that she didn’t and her sister’s job was to convince her that she didn’t have it. Her sister went with her and happens to be a nurse at the time who has MS. I’m not sure if that doctor saved her from years of living hell and decided not to run tests or even make her think she could possibly have it or if he honestly thought that she didn’t have it. I understand that malpractice suits, etc. However, in all honesty, if he did think it but thought she was years away from having any problems from it or if an issue arises she would end up seeing him and he would then run tests. No matter what others may think, I believe if the doctor knew, he did her and her family a huge favor. Most people die fairly quickly and I originally thought my aunt may have a “slow case”. But there is no cure, there are trial drugs and my aunt did take part. I don’t think they did much, if she was or wasn’t given the placebo. She changed to being treated by Mass General ‘s doctors after being diagnosed. These are the best of the best. You don’t get a doctor, you get a team of doctors. Mass General has saved many of lives but no hospital or team of doctors can cure everyone, not even the best of the best. So, live life the fullest and when you think your life sucks, think about someone living with any disease and what their loved ones are going through. My brother was told that he basically was going to die. Luckily, MRI machines can’t tell the difference between a solid and a liquid mass. Thankfully, what the doctor thought was incorrect and it was a liquid which wasn’t good but he wasn’t going to die. I asked my brother about his thoughts and how did he keep it together. All he told me was that it’s a feeling that I can’t describe or even begin to explain to where you could understand it. He said, nothing in the world mattered to him and asked the doctors to knock him the f… out because he doesn’t want to be awake and thinking about it right now. The doctor said, you should call your family. My brother waited until 6am to make the call, he was told at 2am. I couldn’t of sat there with myself. He said, he didn’t want to wake up everyone so they couldn’t go back to sleep, so he waited.
      One thing, he did say which was hard to hear was, “ I’m 43. I don’t want to die this young.” That’s when you learn how fast your life can change and how precious life is…..

  2. Lysha Post author

    I appreciate the kind words. Thank you all so much! I do hope people are learning something about ALS if nothing else knowing what a horrible disease it really is.

  3. Carly Mercer

    I have been thinking about you during this difficult time of the year. hugs to you and your family.


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