Mom newly diagnosed

[Emmielou]

Hi,
My mom has been diagnosed with mnd last September but has had a rapid decline since then. Her speech is extremely slurred, she has lost the use of her right hand and arm and she is falling up to 6 times a day now. Her left arm and hand are very weak and her back is very hunched. We don't know how long she has had this disease but we are guessing approx 2 years when we think back to certain situations etc.. I know it is impossible to put a time limit on this awful disease but from other people's experiences how long from my mums current symptoms can we expect her to live?
Thanks for reading
Emma

 

[pscheffel]

Hi Emma, I am sorry to hear of your Mom's diagnosis. Not one person with a neuromuscular disease has the same progression. I don't see how anyone can give a time frame. My Mom lost her speech first and hasn't been able to swallow in 2 months. She is getting all her nutrition via her feeding tube. I hope the best for you and your Mom.

 

[rich2446]

Sorry about your mom. My doctor told me each person is different with the progression and life with ALS can change at any time. He actually said we do not have an expiration date stamped on the bottom of our foot so no one can answer that. Just take it day by day and cherish every moment with your mom. You are a caring person.
Jean

 

[notme]

HI

A few things--if she's falling, she needs to be using a power chair as falls and PALS simply do not mix.

If her breathing isn't impaired yet, she can continue on for who knows how long. It's the breathing that normally ends up being the cause of death for PALS--not the disease itself. Things like pneumonia or respiratory failure in those that choose not to vent--still more though, pass away from falls.

Medicare will pay the majority of the cost for a power chair if there is not one available in the loaner closet at the ALS association in your area. Welcome to the forum--we are always here to help.

 

[hangingon1]

I would guess, not more than a year. It is really hard to tell, since a person's will is involved. I believe that my wife, who died in Aug. would have been gone 6 to 8 months sooner, if she did not have a strong will. Her body finally overtook her will. Having a speech problem and rapid decline does not foretell a long future. Please keep her from falling. Get her in a hospital bed or a chair. If she has a compound fracture, her state will be more dire than it already is. Take care of her and love her as if each day is the last. The end may come sooner than you think, and you will not be able to show her how much you care. Do not resent having to take care of her. She did not ask for the disease and you are put in a place that can build your character. So go girl, build that character and act like a good daughter to her to the end. And know that --THIS TOO SHALL PASS!