ALS Hits Home & The Wedding Story

My mother, Glenna Moore, was recently diagnosed with Amyotrophic Lateral Sclerosis, more commonly known as ALS or Lou Gehrig’s Disease. This diagnosis didn’t come as a surprise to the family as her “creeping paralysis” has become much more pronounced in the last few months.

ALS is a neurological disease where motor neurons from the brain stop reaching one’s muscles. When muscles no longer receive neurons, muscles cease to move. And when muscles stop moving, paralysis sets in. There is no cure for ALS and patients that suffer from this disease live a life of work-arounds.

At first, patients use a cane to help steady themselves when walking. And when walking becomes too challenging, patients start using walkers, wheelchairs, and scooters as their work-around to get around. Patients also lose the ability to move their arms and hands and thus need to find new ways to write, eat, dress, etc. One’s speech also becomes affected and eventually, ALS patients lose their ability to speak.

But patients do not lose the ability of their mind, nor the sparkle in their eyes. Dementia does not set in with ALS patients and that is what makes this disease so devastating. Sufferers suffer from the inability to move their voluntary muscles but they do not lose the ability to mentally comprehend what is happening to their body. Eventually, ALS patients lose the ability of their involuntary muscles, namely the ability to breathe, and subsequently patients lose their life.

As I mentioned, the family wasn’t surprised to learn of the ALS diagnosis and I had mentally and spiritually prepared myself for that diagnosis months ago.

And it was months ago when I began a special project to capture some of the stories my mom knows. Glenna Moore is our family historian and resident storyteller. She knows so much about intimate relatives and distant relatives. Unfortunately, I’ve never paid much attention to her stories through the years. I realize now … that’s my loss.

So to make up for my past mistakes of not paying enough attention to her stories, I sat down with my mother in August and recorded her telling stories while she shared family photos with me. I plan to turn her stories and photos into mini-documentaries. The first mini-documentary I’ve put together shares the story of the wedding between my parents, Al and Glenna Moore.

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Glenna Moore -- The Wedding Story
click the 'play button' below to view

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Direct link to the video on Google

Comments

[Bailey]

Hi All:

I found this story moving. I too have ALS. I was diagnosed 18 months ago, I started having trouble walking and was blaming it on an old back injury when I was a teenager. I was 39 when I started having health issues. After 4 months of drs, tests scans and hospitals stays. I was told I had Progressive MS. Well, my world was falling apart as I heard the news. A week later I was released with a rehab schedule in place, and a cane. As I left the hospital with my husband and 3 children. My middle son, saw a lady in a wheelchair. He said mommy will you need one of them soon. I said most likely yes baby. He said can I ride on your lap. I said you sure can he said mommy whats wrong with you that you need help walking now. I said well my muscles and nerves are sort of dying inside me baby. He said does it hurt I said sometimes not always. He said will i need to sit when im sick like you. I looked at him and said lets hope you never get sick like me.

Well, after being home from the hospital for 3 weeks I was now using 2 canes to get around the house. I had taken some time off from work and my symptoms seemed to be getting worse every day. On April 13, 2008 I woke to get my kids up for school and was unable to get out of bed. I had lost the ability to move my legs. I started calling to my husband quietly to wake up. When he did he said whats wrong. I said I cant move i cant get out of bed. He said what is wrong your talking funny, I said what do you mean he said your speech its slurred. Baby you must have had a stroke. He got out of bed and called 911, when they arrived at the house they immediately prepared me to be transported to the hospital. My kids were terrified. As I said good bye to them my neighbor stayed with them and off we went to the hospital.

It was within hours, my speech became worse, my legs lost all feeling, and it was getting hard for me to breath. Bye the end of the first day I was on oxygen and could just about wisper words to my husband. The next 2 days were about the same. But my ability to breath was getting harder for me. On the 4th day I could not hide the fact I couldnt breath. Three doctors came into the room, and none of them looked like they had any good news at all, my husband and sister were with me. As the drs asked them to have a seat the one dr said I had been miss diagnosed. I didnt have MS. My husband asked what I did have, They said your wife has ALS and there is no cure. I felt as if my world and life ended for the second time. This time it was going to be fatal alot sooner. I knew to well of the disease, My best friends mother suffered for 10 long years and died a vegetable.

All I could wisper was how long do I have. Drs. said no more than 7 to 10 years. OMG I thought my kids, my marriage, my business. Who will care for them. Not having a clue who would care for me as I detoriated more and more. 2 weeks later I was discharged from the hospital. I was unable to walk by then and I was already put on a ventilator in the hospital. I asked the drs if it could come off they said we can try to take you off but it may not be possible. Well, I could breath without the ventilator, but still needed some assistance so I was put back on oxygen. Atleast it wasnt so bad for my kids to see when I got home. I was transported home by ambulance and placed in bed when they were at school. They had not seen me in a wheelchair yet. And I was not ready to give into using one. I was going to walk as long as possible then I was going to crawl. But I was not going to be confined to a wheelchair for the rest of my life. So I was taught how to use a walker to get around. But I could not go very far and I had to have someone hold me. When my kids came home from school that dreadful day, I was in bed my sister was feeding me. I was so weak from being in the hospital and the trip home I was sick. My oldest daughter came in first and just stopped and looked at me with fear in her eyes, my middle son said mommy you are sicker now right. And I cried. It was time for them to know the truth. As they all sat on my bed I tried to tell them what was wrong, but my limited speech and difficulty breathing made that difficult. My husband and sister had to take over after a few mins. Within a few days I was back on a ventilator, I was up and dragging my legs along with the walker. I lasted with that plan about a month. When I collapsed in my bedroom and broke my left Hip. My husband came home from a drs. appointment and found me. My nurse had never showed up that morning, after another 3 weeks in the hospital I had no other choice but to give in to the chair with wheels. this time when I left the hospital I was in a wheelchair. And I would be for the rest of my life. which was hard getting used to. I was 38 years old had 3 young kids and I was going to need more care than they did.

Within the first 6 months, I lost all of my speech, the ability to breath, I could not swallow and I was unable to move from my neck to my toes. And had a feeding tube. We kept asking the drs. why is the disease progressing so rapidly. They said sometimes it does and sometimes it takes longer. That was 9 months ago. I now require 24/7 care, I am never alone. Most days I am confined to a special bed. Hooked up to machines. When I am up i am in my power chair strapped into it so i dont fall. My husband became ill 10 months after I did. He collapsed at work. And was rushed to the hospital. He siffer a massive brain hemmorage. He fell into a deep coma and was diagnosed with inoperable brain cancer. He lived 4 months. Never coming out of the coma. 3rd worst news is ALS does not affect your sight or mind. 2 months ago i started having some trouble with my vision being blurry, and not being able to see colors. My sister made an appointment to the eye specialist. I was diagnosed with immaculate degeneration. I am also going blind. Talk about rotten luck huh. Well, that is my story. Like the rest of us I am dying too. I cant wait to see heaven. Iam really looking forward to being able to move and walk again. I wonder every day if my husband is all better now too. And if he watches me detoriate every day. I dont think I will see 7 years never mind 10. I got to sick to fast the drs. say. my 1 dr is cool though when i ask him how long he thinks i have he says I wish i knew girl but im a dr not God. But I would say a long way from 10 years. Before I could smile. Now I just blink my eyes. And suck in a breath of air. Im not glad im sick, but I am glad I got to go on this journey. It has made me a better person. And one that can really understand what other people live with. We all say it wont happen to me, I am healthy. So was I till ASL got me. And that all ended. I greatful for each day I have with my kids. I will never see them grow up, never see them get out of high school, or graduate college, never see them get married. Most of all I will never be able to feel them hug me ever again. At first I was able to lift my arms to hug them, they my husband and sister would put my arms around them. Now my arms and hands are strapped to support boards. My head, hands arms, chest, waist, legs and feet are all strapped to my chair. And a Hoya lift puts me in and out of bed. And used to bath me. My little sports car I used to have is now a mini van with a power lift. That lifts me from the ground in my chair into the van. Considering I cant sit up and get out of my wheelchair I cant ride in the seat of the car. So I sit in the back in my chair. Makes transporting me alot safer and easier. Well, we will see what else God gives me soon. Must end this now my eyes are tired and very blurred. Cannt see where mouth stick is going on the keys. And my sister says its is time for me to rest again. I hate the idea of dying it really does stink. But I hope I go soon, like this way isnt fun. And I miss the fun part of life. I honesly just miss life itself. Bye all.

[Samantha]

This story is so sad! I understand everything you are going through as my dad has als. It's a terrible disease for anyone. I take care of my father and he needs care 24/7. With him it started out in his left arm. He couldn't open drinks or lift things anymore. Then it went to his right arm. Next his legs and so on. The Drs thought it was ms as well. He started having symptoms in 2007 and was diagnosed in 2010. He went from walking to walking with a walker, then a wheelchair, and now in a hospital bed. I have to feed him, bathe him, and everything else he use to do on his own. I really wish there was a cure for als and hopefully one day there will be. I know your kids are very sad but i also know they hate seeing you suffering as i do my dad. I just pray that God will heal him(thats all i know to do). Hopefully you will have a great life with your family.