New? Introduce Yourself - Say Hello

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Hi

Read ur msg & want to chat with u.
I am from India, diagnosed with hereditary sensory motor nerves disorder.
My legs are weak & cannot walk properly. I can understand ur situation,
I am also married, have a husband & son who is just 18 months old.
Keep in touch.
Rebecca
 
hello my name is Kelly and I am new to this forum. I am trying to figure out how to start a thread so that I can invite friends and family to participate in the thread. My dad was diagnosed with Bulbar onset ALS in Sept 2011 and has since totally lost his ability to speak and eat by mouth. His fast progression has been difficult on our family. He is being followed at UCSF and the social worker recommended that we seek support groups, so here I am.
 
Welcome, this is a great site for support and some answers. It is full of people willing to help however they can. Hang in there.
 
Hello. My name is Autumn. I am 25 and the caregiver for my mom, who has ALS. She was diagnosed in September 2009. She is currently confined to bed, has extremely limited movement of her hands, can barely speak, and has stopped eating and drinking anything except ice, which is occasionally flavored with fruit juice. We believe that she is probably approaching the end, and I hope to be able to talk with some other caregivers who have cared for a loved one until the time of death and can offer any advice or input on their own experiences. Thank you.
 
Very sorry about your mom, Autumn. I hope you will check out the Caregivers forum that is on the forums listing page, a bit towards the mid to bottom.
 
Welcome newcomers. Sorry you have to be here. To find out how to post etc. go to FAQ at the top of the page. Directions are there.

AL.
 
I just want to Welcome all you newcommers, this is the greatest family on earth.
 
I am 45 and have a 70 year old mother who was diagnosed.

My mother's first started showing signs of slurred speech in July of 2010. she progressively got weak and had difficulty walking, it wore her out. She went to many Dr. all told her they could not find anything wrong. Her mystery illness was finally diagnosed on Feb 7 2012 as ALS. Still trying to process everything. I know very little about ALS. I have no idea how much time we will have with her, I don't know what the progression is......is there a pattern of progression or is it completely different for everyone? This really feels like a nightmare.
 
Hi! I'm Shelley from Illinois. I have not been diagnosed with ALS, but for the past 13 weeks have had problems swallowing. It's like I've forgotten how to swallow. It started with my cutting my food up smaller and taking smaller bites. Then I quit eating certain textures, mashed potatotes, and anything creamy was out. Yet I was still able to eat rice and pastas. Then one day out of the blue, I remember looking at a soda I was drinking and thinking "what if I can't drink liquids" and bam..at that very moment I could not get anything liquid down me. As time went on, I was not able to get ANY food down me either. I have had a barium swallow, a modified barium swallow, and an endoscopy and all came back clean. Tomorrow I'm having a CT scan of my neck and on Thursday another test set up by an ENT doctor. What's puzzling the doctors I see is that if my husband wakes me up in the middle of the night, out of a deep sleep, I am able to drink anything. He wakes me up 3 or 4 times thruout the night and I'm able to get 4 bottles of ensure and some gatoraid down me without any problem at all. But once my brain becomes aware of what's going on, it's like a trap door shuts down in the back of my throat and I can no longer get ANY liquid or food down. My doctor has mentioned a feeding tube if I lose much weight, because I'm very thin to begin with. I think he thinks it may be psychological but to be safe is running all these tests. All I know is that I'm hungry and thirsty all the time and my heart just breaks for those of you diagnosed with this disease. My question is, have any of you ever heard of anyone with ALS being able to drink like I do when awakened from a sleep but not at all during the day? I have not choked on any food, because if I do try to eat it, it's always the same, it won't go down, so I spit it out before even trying to swallow it. I also have excess saliva a lot and spit it into a cup. And at times I have thick phlegm that I can't get seem to hack up. My doctor said my reflex of my tongue was okay, as are all my other reflexes that he checked. Does anyone have any advice for me? Could this be psyschological? If these next 2 tests come back good, I guess I will be making an appt with a psychologist. Again, heart and prayers are going out for all of you who have been diagnosed with this disease and for those of you who have loved ones with it.
 
Doesn't sound like ALS to me sparkles. Sorry about your mom prairie girl. Everyone is different but slow progressors usually stay that way.

AL.
 
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