susan-kinkade
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I also have bulbar and respiratory onset ALS. My symptoms became noticeable in Dec 2018. My Pulmonologist and Neurologist gave a preliminary diagnosis in June 2019. I had the diagnosis confirmed by an ALS Clinic in December 2019. My primary symptoms were speech and swallowing with some shortness of breath. In December 2020 I had a peg tube inserted. I was very hesitant to do this but it has been blessing. Now my meds and food are through the tube and I have lost all speech. I communicate through a white boards and a Text to Speech App. It is user friendly and easy to customize. I developed head drop in the past month. I have a neck brace that is a wire moldable brace. I don’t wear it all time just when I get tired in the afternoon or evening. This has a journey like no other but I try to celebrate the little things in everyday life. My advice is listen to your body and rest when you need to and enjoy the things you’re able to do.
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How do ALS patients deal with constipation? I’ve had a feeding tube for six months and began having trouble with constipation. I do not take anything orally and make sure that  I stay hydrated using the feeding tube. Are there any suggestions out there?
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Has there any more progress in this study.
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Yes, as the day wore on my speech would get  very weak and it was hard to articulate words. I actually got exhausted trying to talk. At that time I was not drooling. For me the drooling started when my speech was totally gone. The drooling for me is less in the morning and gets more intense as the days goes on. I use a cough assist and suction machine to help manage it.
The recording of videos is a good idea. My 7 year old granddaughter asked when my voice was coming back! -
Anne,
My speech started like yours and stayed that way for a about 6 months. Once it started to be difficult in the mornings it progressed to non verbal in about 2 months. It was very fast.
Any other questions please don’t hesitate to ask.
Susan