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slicknscoot

Member
Joined
Sep 8, 2012
Messages
10
Reason
CALS
Diagnosis
09/2012
Country
US
State
Pa
City
Northumberland
I'm new to the forum. My mother in law was diagnosed Aug 2012 with ALS. Her symptoms began with drop foot in her right leg in July 2010. By July 2011, she had lost most of her balance and was starting to loose strength in her hands. Then she started slurring and having difficulty swallowing. Then around the following spring of 2012, drop foot was starting in her left foot. By this time, she had 7 mri's and 2 emg's. I learned about ALS online when I was trying to get answers for her symptoms but her doctor kept saying that there wasn't any evidence on the emg's. He reffered her to an ALS clinic June 2012. Thats when my husband and i decided to buy another house, so that she could move in with us, so that I could be her caretaker. She has dropped over 20lbs and has finally agreed to a peg tube and all of her feedings happen via tube. In the past month, she went from 54% to 42% on her breathing test. She is currently waiting to get her bipap and dynavox machine. She does breathing treatments now along with a cough assist and suction machine. She has 9lbs of strength in her left hand and 24lbs in her right.
I have been googling every symptom that she starts to experience and I find comforting to know that I can give her answers by coming to this forum.
 
Hey slick (love the screen name)

welcome to our forum--sounds like you have a good handle on your mil's care. We will be here for your moral support and to answer any questions we can.

Bobbi
 
Welcome to the forum slicknscoot
 
Welcome to the forum feel free to ask any questions. I have found a wealth of information here. What a wonderful DIL you are to take care of your MIL.
 
Bless you for taking in your mother-in-law. Welcome to the forum and I hope we can help with any questions.

Laurel
 
Thanks for the moral support. Some days are better than others. The newest struggle is cooking.... she says that when I cook in the house, then she has a hard time breathing. I notice that its a little better when things are cooked in the slow cooker but if its on or in the stove then she confines herself to her room to wait until the house is aired out. Anyone else have this problem? We quit using candle scents months ago due to the same issue but I guess its getting really sensitive now.
 
If your mom, aunt, or another relative is available to care for your little one, you may feel like you’ve won the childcare jackpot. The biggest perk of relative care? The peace of mind that comes with knowing that a trusted family member is minding your precious bundle. It’s a win for you and your infant — he gets one-on-one attention, and you get an infant caregiver who’s (usually) much easier on your wallet. No wonder more than a quarter of all working mothers opt for a relative caregiver.
 
the breathing issues from cooking may get better once she has the bipap? Have they gotten the WC ordered yet? It can take medicare months to get it for her, so order early if possible.

You're dealing with a lot--it's very kind of you to move into a new place so you could care for her. Did they tell you that she can still eat real food with the PEG (as long as choking isn't an issue, of course). Some people don't realize they can still eat with one.

How long on the Bipap wait? There may be one in the loaner closets from the ALS association if it's going to take a while. Welcome, sorry you have to be here, but you've found a great place for information.
 
She just got the bipap yesterday but it will take some getting use to.... she says its very hard to breathe with it as she feels it takes her breath away. she's unable to get medicare due to age and the fact that she hasn't worked in 10 years. She has tricare prime and has an evaluation for the weelchair on dec 7th. She will be responsible for 20% of it though. She's also getting a dynavox in about another week or so.
 
Welcome to the forum feel free to ask any questions.
 
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