Looking for ways to help my mother be more comfortable

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Marcia Speakman

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Oct 26, 2005
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We just found out in July that my Mother has ALS. It started with her speech and swallowing and then she started having trouble with her right foot dropping. She now has a feeding tube because it was too hard for her to eat and take her meds. She is 77 and lives with my husband and I and I am her sole caregiver. She recently fell in the bathroom and cracked 4 ribs and battles nausea. She doesn't sleep well so neither do I and she wakes up with a lot of pain in her legs and neck. I think a lot of the issues with the neck is she sleeps propped up on pillows and her head ends up hanging down. I've tried to talk her into get a hospital bed but she just doesn't want to. (I think it has a lot to do with me having space to lay beside her when she can't get to sleep or feels really bad.) She recently started taking Zolof so I am hoping the nausea will get better when she gets adjusted to it. She feels so bad it depresses her and she is spending 95% of her time sitting in her bed. Can anyone offer suggestions to help the pain( I thought there would not be a lot of pain with ALS) Does anyone with ALS visit the Chiropractor? Any suggestions for the sleepless nights? She takes Remeron and Zolof at night and Ativan through the day. In the begining of the Ativan and Remeron she would sleep but now wakes every few hours. Her neurologist hasn't even suggested PT but I wonder if anyone has benefited from it. She did some ST and PT before she was actually diagonised but nothing now. Being 77 she is not up for a lot but she just gets weaker and weaker and seems unhappier with each passing day.
Any advice will be appreciated.
 

Jane

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Lost a loved one
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Pain control

Hello Marcia, I am so sorry your Mom has this awful disease. My sister also has it so I think I can answer a few of your questions.
Some people do use chiropractic care to help ALS symptoms with some success.
Sis uses tylenol extra strength, codiene, gabapentin to control pain.
She also finds that massaging her legs helps some. Twice a day she gets range of motion exercises devised by a phsyio therapist to help keep her joints from becoming stiff and contracted.
Sis also takes meds. to help with depression and with shortness of breath attacks.
There are several meds to help people cope with all the problems associated with ALS. Your Mom might be able to get help from a neuro or perhaps at an ALS clinic. I don;t know if your Mom has contacted your local CCAC but they should be able to offer some suggestions. I hope this will be of some help to you. Take care and continue to come to this site as there are several people who will be able to give you wonderful info. Perhaps posting on the general discussion board will get far more info for you. Good Luck
Jane
 
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