Yesterday morning, my uncle passed away from this dreaded disease. I was there when (I believe) his sprit left his body just 20 minutes before. It was such a hard thing to watch, but I know he is in a much better place.
I'll get to the gist of this post.....my uncle was diagnosed with ALS less than 24 hours before he died. He had been having respiratory issues for just a couple of months prior to his passing. I have been racking my brain and doing so much reading about ALS and I cannot find any instances of ALS attacking the respiratory system before the "withering away" of the limbs and other muscles. My uncle was not confined to a wheelchair, and was talking, etc until shortly before his death. It's so hard for me to cope with this because a disease like ALS is progressive. I (we) didn't even get a chance to grasp that he had this disease before he passed.
Has anyone here ever dealt with ALS and if so, have you ever heard of it basically progressing backward? I keep crying because my poor uncle had to make the decision to have his vent tube and feeding tube removed Wednesday afternoon and he was gone by yesterday morning. I can't imagine how hard it is to have complete mental capabilities and all other senses but your body just stops. I'm heartbroken and need help coping.
Thank you for any info you can pass on to me.
To everyone who responded....thank you! I was not able (nor would I have felt it was my place) to talk to the doctor to find out about bulbar onset ALS. That is apparently what took my Uncle from us. I'm still having trouble with his passing. He was such a great guy. You know how there are some people that you think will live forever? That was how I felt about my uncle and how I feel about my dad. It's so hard but I know he's no longer suffering.
yes. there is bulbar ALS that starts with speech and breathing.. the arms and legs are fine.. but he patient cant breathe or speak well.
bulbar ALS generally progresses faster and has a shorter life span.
my mother in law had this.
Please accept my sympathy. Yes, my grandmother passed from ALS, which can start in the limbs or the respiratory system. She had the latter. But she had been diagnosed for six months. While I am truly sorry for you that you had no warning, I am aware of how Gram suffered and am relieved that your uncle had a shorter period of suffering. As for your coping: prayer, time, and the love of family, friends and even strangers will help you accept what you cannot change or fathom. Take care of yourself.
I am sorry for your loss. My grandmother had ALS. About 3% of ALS sufferers have respiratory onset ALS wherein respiratory problems are the first sign of the disease. It is also pretty common for people to dismiss or ignore signs of ALS. Perhaps knowing that your uncle did not suffer through years of this disease with his body withering and wasting away can be of some comfort to you and your family. It is a trite saying but time heals all wounds. With time you will cope with your loss. Consider visiting a support group or volunteering with a group your uncle supported.
I'm so sorry your family is going through this.
I can only say that he didn't suffer very long. My friend that died from this disease struggled for a long time. At first she was able to come to church by using a walker. Then she was confined to a wheelchair and was home bound for the most part, then bed, then she struggled just to breathe, it was hard to watch her go through this. She struggled and suffered for few years.
I'm so sorry for your loss. My great aunt died from ALS. What you want to inquire about, or get more information on, is thoracic onset of ALS, which is not very common. Hope this helps.
I am sorry for your loss. May your uncle's memory be eternal.
I'm sorry I don't have any first-hand information on ALS. I just want to relay my condolences. I am truly sorry that you and your family have suffered a loss.
Prayers to you and yours.
I can only speak to what I know, and I am not familiar with the type Lisa O. has mentioned (the response below mine). My uncle had ALS, and he followed the more typical slow physical decline.
First it was weakness, like spilling or dropping coffee cups. Over the course of a few years it progressed until he was bedridden. He lived across the country from us, so I did not see him personally after his diagnosis. My father was able to visit him both after his diagnosis, when he was still able but limited in his physical abilities, and also shortly (weeks) before he passed away.
Very sorry for your loss.
A life long family friend recently passed away from ALS. It was horrible for everyone involved. Her son didn't leave her side for the final 2 weeks of her life, and it was absolutely awful to bear for him and her. She suffered a full year before God delivered her from suffering.
The only help I can pass along is to pray, pray, pray. Pray for his soul, and thank God for not letting him suffer for long, and for lettin you be there with him. Once your mind has had time to process this horrible series of events it will start to get a little better. It has to.
