New to ALS and the path of destruction
Hi, I'm Kali I am 26 years young, I am married and have three children. My mother started having slurred speech 8-9 months ago and in May found out she indeed has ALS, say what? Only thing I knew about ALS were the bucket challenges a couple years ago! She has the bulbar onset ALS I believe? She's doing okay, her speech is getting worse and she's scheduled to have her feeding tube in soon, I just dropped everything to come home to be with her until the path ends. Well I've been here for 2 1/2 weeks now, I started getting "twitches" in my right foot 2 days after I saw her I still have them and now my right foot is thinner and the arch is painful it feels like I have a strained muscle that won't undo! I've been to the doctor to get blood taken, everything was normal except my Monocytes they are high! My moms is high, so now I'm panicking because how I'm suppose to take care of my mother when I'm having the same issues? My mind just doesn't comprehend that I could have ALS, it does run in our family so I'm terrified!!! =[
Comments
Janice1940
Sun, 08/14/2016 - 22:52
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My Wife was has Bulbar ~ ALS
She has lost her speech and ability to sallow completely. Weight has been dropping and strength issues are a concern also. She had PEG put in Jan 2016. Tube feedings are based every 4 hours staring at 8 am and ending at 8 pm. All med have to be crushed in to power form. Janice is my wife and we are dealing with issues as they come up. WE both try to be positive about this, but we understand time is not on our side. I am happy to share any information that might help you deal.
Jim
gerrie
Sun, 10/16/2016 - 12:28
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My mom was diagnosed Jan 2013
My mom was diagnosed Jan 2013 with als.at that time she had a trac and a feeding tube.she now has no use of anything but her eyes.we are fighting bed sores cause she is only 79 pounds.when will I know it's time to let go.she still knows what is going on and watches tv everyday with me doctors always talk about her quality of life but how do I make the decision on when she goes.this is so hard.and I'm not sure what kind of als she has and really never wanted to know if it's one I could get someday. Please help when done let go of the one person I would die for
Mary
Mon, 08/22/2016 - 19:44
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Mom with bulbar onset
Hi Kali,
My mom has bulbar onset and I am 26 years old too. My mom was diagnosed in December but looking back her symptoms had definitely starting showing before then. My story is very similar to yours. The first thing we did was get a PEG tube for my mom. It has helped so much. Before then, I literally lived in fear every time she ate. I also spent a lot of time coaxing her to eat since she had lost a lot of weight. I also started noticing twitches all over my body after her diagnosis. I have no idea if they were always there and I just didn't notice or if they were stress induced. My family history is not well known so who knows if it is familial or sporadic. It freaked me out at first but I've put it out of my mind. Just focus on living in the present and tackle the obstacles when they come. :) xx
- Mary
Big Rob
Wed, 08/24/2016 - 11:03
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Hi Kali,
Hi Kali,
You do not have ALS. It is all the stress and pressure you are under since you mom's diagnosis. My 2 brothers both passed away 10 months ago from ALS and I thought I could get it but it is more self awareness. Please try not to think about it and take care of your mom the best you can. Have you had a chance to get your mom Home Health care through an agency? I went through the same thing when my mom and I were caring for my brothers and her sons. I am here to help you if you need anything. Please do not hesitate to ask me anything.
Love you Sister,
BigRob
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