Not a happy post but please read...
gambitsgurl
Posts: 632 Member
I am not sad. I am not bitter. But I do need people to know about Lou Gehrig's Disease. We lost my husband and my children lost their father 2 years ago today to ALS. Please, in his honor, do something to learn about this disease today.
My attempt to describe ALS
I did not have ALS but I fought it for 4 years. Here is my attempt to capture what I saw my husband go through. He was 43 and we had a 3 & 5 year old when he was diagnosed.
ALS (Lou Gehrig’s Disease) destroys the upper and lower motor neurons, or in layman’s terms, it destroys all voluntary movement. Just think of everything you do willingly and take it away. BUT – ALS does NOT “paralyze”. Paralysis is loss of nerves, thusly loss of feeling in the area that can’t move. This is my own thought and not a medical definition. And it is HORRIFIC. Let me explain.
Gary could see a mosquito land on him and could feel it bite him. He could feel the itching. He could not stop it or scratch it.
Gary was once outside and could see a spider we could not. He watched it crawl down it’s web string towards his face but could not move or talk to tell us what was coming.
Gary could taste food and feel hunger but could not chew or swallow.
Gary could feel a hug but could not hug back.
Gary could feel you tickle or pinch his toes but not move.
Gary could feel muscle cramps and soreness from inactivity but couldn’t move his leg to escape the pain.
Gary could feel the need to use the restroom but not control the muscles to do it on his own.
ALS does NOT affect the mind but the control the mind has over the muscles. One day in particular Mackenzie (then 8) was moving his wheelchair as he lay in the hospital bed. She accidentally made it move backwards and the control stuck trapping her against the bookcase cutting off her windpipe. Gary lay there watching her slowly suffocate and couldn’t move. All he could do was lie in the bed and watch as his daughter slowly die. All he could do was watch in horror. (I did hear the commotion and save her but still… what he saw and couldn’t help….)
Gary COULD attend the kids games but couldn’t run or throw or play with them.
ALS – the control of muscle withers until the patient can not move any part of their body. And then, while the heart and lungs are not affected, the diaphragm stops working and the patient drowns or ventilates to live inside their body with no movement but full mental function. THOSE are their only two choices.
THAT is ALS. THAT was our life. THAT is something that needs to end.
My attempt to describe ALS
I did not have ALS but I fought it for 4 years. Here is my attempt to capture what I saw my husband go through. He was 43 and we had a 3 & 5 year old when he was diagnosed.
ALS (Lou Gehrig’s Disease) destroys the upper and lower motor neurons, or in layman’s terms, it destroys all voluntary movement. Just think of everything you do willingly and take it away. BUT – ALS does NOT “paralyze”. Paralysis is loss of nerves, thusly loss of feeling in the area that can’t move. This is my own thought and not a medical definition. And it is HORRIFIC. Let me explain.
Gary could see a mosquito land on him and could feel it bite him. He could feel the itching. He could not stop it or scratch it.
Gary was once outside and could see a spider we could not. He watched it crawl down it’s web string towards his face but could not move or talk to tell us what was coming.
Gary could taste food and feel hunger but could not chew or swallow.
Gary could feel a hug but could not hug back.
Gary could feel you tickle or pinch his toes but not move.
Gary could feel muscle cramps and soreness from inactivity but couldn’t move his leg to escape the pain.
Gary could feel the need to use the restroom but not control the muscles to do it on his own.
ALS does NOT affect the mind but the control the mind has over the muscles. One day in particular Mackenzie (then 8) was moving his wheelchair as he lay in the hospital bed. She accidentally made it move backwards and the control stuck trapping her against the bookcase cutting off her windpipe. Gary lay there watching her slowly suffocate and couldn’t move. All he could do was lie in the bed and watch as his daughter slowly die. All he could do was watch in horror. (I did hear the commotion and save her but still… what he saw and couldn’t help….)
Gary COULD attend the kids games but couldn’t run or throw or play with them.
ALS – the control of muscle withers until the patient can not move any part of their body. And then, while the heart and lungs are not affected, the diaphragm stops working and the patient drowns or ventilates to live inside their body with no movement but full mental function. THOSE are their only two choices.
THAT is ALS. THAT was our life. THAT is something that needs to end.
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Replies
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Wow, that sounds really tough. I'm sorry you had to go through that.0
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Thank you for sharing - and my thoughts and prayers are with you as you and your family experience the grief and loss. There are no words to wipe away the pain that you must feel, but know that I wish I could do that for you.
Blessings
Vickie0 -
My heart goes out to you and your children! I am sorry for your loss, but thank you for sharing this insightful information. That is great that you are making people aware of what pain this awful disease causes! I had no idea! Stay strong!0
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Thank you for letting me learn something new. However, I am sooo sorry for your and your childrens loss. I am sure he is up there in the sky looking over you and your children running around and enjoying every game they play! I wish the best for you and know that this must have been a major step for you! Thank you for sharing.0
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Thank you for sharing your family's story. I didn't know about ALS until I read your post. So you managed to enlighten me and knowledge is power. I hope you are able to take this and use it in a powerful way. Good luck to you on your journey.0
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I went to http://www.alsa.org/ and found a walk near me (unfortunately they've already walked) but it's something to consider for next year. I don't see this cause listed as much as other causes. Thanks for posting this, sharing your story and bringing awareness.0
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Thank you for your post, I admire the strength you must have to have gone through that with him and to share your story. I will do as you request and do a little research today.0
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I definitely agree with bynsky! Thank you for sharing! Stay strong and remember the blessings he gave you in those children!
Melody0 -
HUGS and prayers for you and your children. One of my good friends lost her husband and her two sons lost their daddy to this disease in August.0
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Thanks for sharing this... positive vibes and warm hugs to you and your family today. :-)0
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So sorry for the loss of your husband and your children's father. It must have been really tough for all of you. I am sure your husband was proud of you for the strength you must have given him. So sorry that you and your family had to go through this. I will try to learn more today about ALS for Gary's memory and your future. HUGS from me and may you cherish all your wonderful memories today as you reflect on your time together.0
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Thank you for sharing this with the MFP community. I had no idea of the horrific details of this disease.
You are beautiful and strong and have built a new life for your children and yourself. This is so important.
Blessings to you. I can relate in more ways than people realize. My thoughts are with you today. Barbara0 -
I am not sad. I am not bitter. But I do need people to know about Lou Gehrig's Disease. We lost my husband and my children lost their father 2 years ago today to ALS. Please, in his honor, do something to learn about this disease today.
My attempt to describe ALS
I did not have ALS but I fought it for 4 years. Here is my attempt to capture what I saw my husband go through. He was 43 and we had a 3 & 5 year old when he was diagnosed.
ALS (Lou Gehrig’s Disease) destroys the upper and lower motor neurons, or in layman’s terms, it destroys all voluntary movement. Just think of everything you do willingly and take it away. BUT – ALS does NOT “paralyze”. Paralysis is loss of nerves, thusly loss of feeling in the area that can’t move. This is my own thought and not a medical definition. And it is HORRIFIC. Let me explain.
Gary could see a mosquito land on him and could feel it bite him. He could feel the itching. He could not stop it or scratch it.
Gary was once outside and could see a spider we could not. He watched it crawl down it’s web string towards his face but could not move or talk to tell us what was coming.
Gary could taste food and feel hunger but could not chew or swallow.
Gary could feel a hug but could not hug back.
Gary could feel you tickle or pinch his toes but not move.
Gary could feel muscle cramps and soreness from inactivity but couldn’t move his leg to escape the pain.
Gary could feel the need to use the restroom but not control the muscles to do it on his own.
ALS does NOT affect the mind but the control the mind has over the muscles. One day in particular Mackenzie (then 8) was moving his wheelchair as he lay in the hospital bed. She accidentally made it move backwards and the control stuck trapping her against the bookcase cutting off her windpipe. Gary lay there watching her slowly suffocate and couldn’t move. All he could do was lie in the bed and watch as his daughter slowly die. All he could do was watch in horror. (I did hear the commotion and save her but still… what he saw and couldn’t help….)
Gary COULD attend the kids games but couldn’t run or throw or play with them.
ALS – the control of muscle withers until the patient can not move any part of their body. And then, while the heart and lungs are not affected, the diaphragm stops working and the patient drowns or ventilates to live inside their body with no movement but full mental function. THOSE are their only two choices.
THAT is ALS. THAT was our life. THAT is something that needs to end.
Your message is extremely powerful, you write extremely well and you are definitely doing the right thing informing people about ALS, you witnessed it at very close quarters and are in an excellent position to be able to make people aware.
Terrible illness and something which, but for a few people, can fully understand the trauma and horror that accompanies it.
I was imagining how painful cramp in the back of the thigh or calf is, cramp is one thing, but being totally unable to do anything to try to relieve the pain or even to let anybody know is just awful and that's putting it lightly!
I could only imagine the absolutely horror your husband must have felt when it came to your daughter and that wheelchair incident!!
There is nothing I could say that would make you feel any better whatsoever, I sure wish there were. However, thank you for sharing your own experience, because I for one, never realised just how traumatic and horrific ALS was and it has certainly opened my eyes just a little.
All the very best
xxx0 -
A good friend of mine lost someone close to hear to ALS. I knew what it was but never thought of it in the way you described. What a horrible thing for someone to go through. Thank you for sharing your story.0
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Excellent message. I'm so sorry to hear about what you and your family went through. Thank you for taking the time to share your story and to teach me something new today.0
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I have a similar story. My father had ALS for 9 years, he passed away this past April. I understand what you mean about fighting a disease that you do not have. He was a marine for 20 years before his ALS was activated by a knee surgery. To watch him deteriorate was heart breaking, I was 13 years old when he was diagnosed, I took on much of the responsibility to take care of him. He was the most caring, generous, funny man that I know. I miss him everyday, Monday (10/18) was 6 months since he has been gone, and his birthday was this past friday (10/22), he would have been 51 years old. It was an extremely tough week for my family. Part of the reason I have started taking better care of myself is because of him. So i understand your pain and what you are going through. I hope that you children are doing better. If you ever need someone to talk with about your husband and your loss I am here.0
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