Im sooo Sorry
I praying for your mother and your family.
Sad news, it's gonna be a rough year
- Thread starter Tala
- Start date
I am so sorry. I understand how challenging it can be when given news that we know will be life altering.
So sorry Tala,
I haven't read through the whole thread so I don't know if anyone mentioned it, but check out the book Tuesdays with Morrie. Great book about a guy with ALS.
- Thread starter
- #56
Well, I saw mom tonight. She was very quiet. Apparently the needle test did not go well. What I gathered from the little she said was that the doc said she's losing muscle (or muscle control?) in her arms and upper body.
This is not good, especially consider that it started with a lisp back in May/June and it's already moving fast!!!!!!
I was hoping since it just "started" that she would be looking at the 5+ year end of the range, but right now I feel very afraid that we may not have much longer with her.
Mom didn't say it, but my sister told me that she (mom) is having problems getting cold and shivering and not being able to stop. I suspect it might be a symptom of the weight loss and loss of muscle control. I'm really thin myself and I tend to shiver quicker than "fluffier" people do. Sis also said that dad has been crying. For her age (16) she is perceptive. She told me that if mom dies she doesn't think dad will do very well fighting prostate cancer either. I've had the same thought myself, but I wasn't gonna say anything.
This is not good, especially consider that it started with a lisp back in May/June and it's already moving fast!!!!!!
Mom didn't say it, but my sister told me that she (mom) is having problems getting cold and shivering and not being able to stop. I suspect it might be a symptom of the weight loss and loss of muscle control. I'm really thin myself and I tend to shiver quicker than "fluffier" people do. Sis also said that dad has been crying. For her age (16) she is perceptive. She told me that if mom dies she doesn't think dad will do very well fighting prostate cancer either. I've had the same thought myself, but I wasn't gonna say anything.
PLEASE!!! Contact the ALS Association http://www.alsa.org/ or the MDA ALS division http://www.als-mda.org/disease/als.html They can help you understand this more, provide help with medications and medical hardware such as beds and wheelchairs when needed. If your Mom isn't already on it, get her signed up for Social Security and Medicade ASAP. The process is a pain in the butt so you need to jump on it right away, I doubt she will be turned down with this diagnoses.
There are many different forms of ALS. Some folks loose their ability to talk, some the ability to walk, others the ability to use their arms. My very bestest, bestest, bestest friend, Tom, was diagnosed with ALS less than a year after his only son was born. Tom first lost his ability to walk, then stand, then his arms, and so on. It wasn't until just few hours before his death did he loose his ability to speak. From then on he communicated with us by moving his eyebrows, 1 for no, 2 for yes. Even when his breathing changed on the verge of death, I asked him if he was ok, and he responded with 2 lifts of the eyebrow that he was. I sat at the foot of his bed with the rest of his family as he slipped away.
Please don't give up hope so soon. Although there is no cure for this hideous disease, there are treatments that can help people live longer than they did when Lou Gehrig was diagnosed. Contact the ALS Association and get ALL the info you can.
Prayers coming for all of you
There are many different forms of ALS. Some folks loose their ability to talk, some the ability to walk, others the ability to use their arms. My very bestest, bestest, bestest friend, Tom, was diagnosed with ALS less than a year after his only son was born. Tom first lost his ability to walk, then stand, then his arms, and so on. It wasn't until just few hours before his death did he loose his ability to speak. From then on he communicated with us by moving his eyebrows, 1 for no, 2 for yes. Even when his breathing changed on the verge of death, I asked him if he was ok, and he responded with 2 lifts of the eyebrow that he was. I sat at the foot of his bed with the rest of his family as he slipped away.
Please don't give up hope so soon. Although there is no cure for this hideous disease, there are treatments that can help people live longer than they did when Lou Gehrig was diagnosed. Contact the ALS Association and get ALL the info you can.
Prayers coming for all of you
Tala, so sorry to hear this news, do what CM says, learn everything you can about it.
I have a patient with ALS. She first started having speech problems about 3 years ago. She can't talk at all now and her 89 year old husband feeds her through a tube. She can't chew or swallow and always has a rag to drool into. She also always dresses in layers and has a heavy shawl.
She still barely has enough control to write messages or give signals that both she and her husband understand.
Her children are all taking it in stride and her attitude is just amazing. I ask her yes/ no questions but what I love the most about her are her gleaming positive eyes and the little smile she has left.
They all know that she probably has less than a year left, but they take it one day at a time, they are positive about it and realize that eventually the muscles in her chest will fail and she will no longer be able to breath. They can put them on respirators in hospitals and keep them alive for longer, but the outcome is always the same and there is no quality of life in that.
It won't be easy, but with faith and a positive attitude you can help make things easier.
Prayers headed your way.
I have a patient with ALS. She first started having speech problems about 3 years ago. She can't talk at all now and her 89 year old husband feeds her through a tube. She can't chew or swallow and always has a rag to drool into. She also always dresses in layers and has a heavy shawl.
She still barely has enough control to write messages or give signals that both she and her husband understand.
Her children are all taking it in stride and her attitude is just amazing. I ask her yes/ no questions but what I love the most about her are her gleaming positive eyes and the little smile she has left.
They all know that she probably has less than a year left, but they take it one day at a time, they are positive about it and realize that eventually the muscles in her chest will fail and she will no longer be able to breath. They can put them on respirators in hospitals and keep them alive for longer, but the outcome is always the same and there is no quality of life in that.
It won't be easy, but with faith and a positive attitude you can help make things easier.
Prayers headed your way.
I'm sorry, Tala.
Please do contact the ALS support groups listed above, they can help make the most out of whatever time your mom has left. You all have a tough path to travel, and I'll hold your family in my prayers as well.
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