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justb

New member
Joined
Jul 23, 2007
Messages
9
Reason
PALS
Country
US
State
nm
Hello everyone. I am an adult daughter and caregiver to my recently diagnosed mom. She is 58 years old and started having problems around the middle of January 07. She started having frequent falls and could not get up by herself and just generally felt weak. Six months later a muscle biopsy was done and she is officially diagnosed. Her sister died from ALS three years ago, so it is either one huge coincidence or Familial onset. She had a blood test sent to a Genetic testing lab in Massachusetts to be sure.

In January my mom was running around doing ten billion things, just as she's always done, and now she is confined to bed or a recliner with no ability to walk, very little ability to talk, and is choking and coughing, or rather, trying to cough, all the time. Her face twitches constantly and her arms and legs look like they have something crawling just under the skin non stop. She can't blow her nose and already can't drink water. The neuromuscular specialist who diagnosed her told her she is progressing very rapidly and suggested she come home and get her affairs in order. I wish someone could please tell me what to expect. I hate not knowing what tomorrow might bring.
 

hboyajian

Distinguished member
Joined
Oct 31, 2006
Messages
267
Reason
Lost a loved one
Country
US
State
Washington
I am so sorry you are suffering through this and that your mother is declining so rapidly. It must be overwhelming. I hope you have support for yourself as well. Have you taken your mother to an ALS clinic where there are many resources and assistance available, or is her doctor an independently operating neurologist? If you have not registered with the ALS Association, that would be a necessary step. They can help you with equipment you may need to borrow or help with purchase (such as a specialized electronic wheelchair so she can get around and not be so housebound if she wishes), information, specialists to assist with different issues, and support groups for you and your mom.

Has the doctor recommended a PEG tube for direct feeding, since your mother cannot swallow easily? For difficulty with coughing out phlegm, she could use a cough assist and suction machine. These things can ease her discomfort and help her maintain what functioning she has a little longer, and prevent aspiration of food or secretions into her lungs. You did not mention difficulty with breathing, but I wonder if she has had a pulmonary function test. As her breathing becomes compromised, at some point she could benefit from a Bi-pap (non-invasive breathing assistance). How is your mother coping with this extreme and sudden change in her life? It may be hard to talk about all the decisions that need to be made, because you both come face-to-face with mortality. I can sense your deep love for your mother. This must be so hard on you. Bless you for being there for her. Sincerely, Holly
 
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