Mobility Question

[troy]

Hi,

Does PALS ultimately ALWAYS end up totally immobile if they live long enough? Is the nerve damage going to continue until all the motor neurons are dead and no more mobility left? Are there PALS where progression has stopped completely? Very few?

 

[Al]

As far as I know, if you live long enough and have ALS you will end up paralysed. But that could take up to 40 years as Steven Hawking has shown.
AL.

 

[John1]

Troy, as Al says, if you live long enough you will likely end up paralyzed: a better approach might be to estimate your own progression rate. If you have progressed slowly over some years, that will very likely continue. Conversely, if you have declined very rapidly, unfortunately that rate will also likely continue.

 

[caroliney]

Als Reversing And Halting Progression

Hi All,

According to the neurologist in Miami, Florida, Walter Brabram, I think was his last name, he had two patients, one that ALS haulted, and another patient that ALS completely reversed and the patient went back to work after being totally disabled. And of course, Steven Hawking, was another ALS patient who changed the ALS facts somewhat. Guess this challenging motor neuron disease acts differently on each one. However, it is best to take one day at a time, and remember life is precious no matter what we have to deal with each day.

Anyone know of anyone using a mask with a volume ventilator? My husband is going to try this method. If anyone has any feed back on this type of procedure, would appreciate some words of wisdom from the PALS.

Caroliney