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Re: riba & speech, hope

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Mike....the ribavirin is an antiviral drug, I took 1000 mg per day. It is

known to cause anemia but my blood work was fine in that respect. Also, it is

Alpha Interferon that I took, 3 injections per week at 3mil iu each.

In response to the speech and soft palate, I feel it is more in the voice box

or airway. My words are not slurred, just no volume and it seems as if they

are on an exhale. I need to breath in before saying the next word or syllable.

Kind of like talking after running a long distance (remember when).

Rita, some people seem to have milder forms of PLS and I suspect you are one

of them. It really gets scary when you are having trouble with the speech and

breathing. Plus, fast progression is also extremely frightening. I am scared

that if I just sit back and see what is to happen, I'll soon be competely

disabled. I am pleased that you are stable at this time. We can only pray

that you will continue to remain that way.

I do think you can do some things to slow down the progression and obviously

(since I've just had a big setback taking a medication for another condition)

you can do a lot to speed up the progression. I think we have to be very

cautious as to what we put in our bodies, how much stress we are under and

treat ourselves with " kid gloves " . Medical Science is making great advances

and I am confident that a breakthrough will happen in a matter of years. It

used to be said that Aids was a fatal disease. Now it is being successfully

treated. Our biggest chance of finding a treatment or cure is through ALS

research. I continue to have hope for the future and will search for answers,

only stopping when there are some answers!

Please don't take any offense at what I have said here. We all have different

opinions and ways to deal with this. I think you are trying to tell us to

" accept what is " but somehow it sounds more like " give up " to me, something

I'm not ready to do. I guess I need time to be able to accept this. I may have

to gradually admit that there is nothing to be done, but hopefully something

will be done before I get there.

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