@sekinkade69
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Tom Hehir and
Susan Kinkade are now friends 1 year, 10 months ago
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Susan Kinkade replied to the topic Urgently referred to ALS clinic. Anyone here have respiratory and bulbar onset? in the forum Diagnosis Information and General Questions 1 year, 10 months ago
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…[Read more]
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Susan Kinkade replied to the topic Urgently referred to ALS clinic. Anyone here have respiratory and bulbar onset? in the forum Diagnosis Information and General Questions 1 year, 11 months ago
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 -
Susan Kinkade replied to the topic Urgently referred to ALS clinic. Anyone here have respiratory and bulbar onset? in the forum Diagnosis Information and General Questions 1 year, 11 months ago
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…[Read more]
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Susan Kinkade replied to the topic Speak up and let us know what topics are useful! in the forum Using our Forums 2 years ago
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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Susan Kinkade replied to the topic Single Injection of RNA Therapy Blocks Degeneration And Prevents ALS Progression in the forum Flash Briefings 2 years, 1 month ago
Has there any more progress in this study.
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Amanda and
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Susan Kinkade became a registered member 2 years, 2 months ago
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Hello Susan, and welcome to the ALS forum. I’m Amanda, one of the co-moderators of the forum. We are happy you have joined our online community. You will find that the ALS forum is made up of people with different associations with ALS. My family has an extensive history of ALS and we know that we have a genetic mutation in the SOD1 gene. I lost m…[Read more]
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Hello Susan,
Welcome to the forum! I am one of the forum moderators, as well as a person who is living with ALS: I was diagnosed in 2010.
If there is anything specific you would like to see discussed on the forum, feel free to post a new topic in any of our forums or jump in on an existing topic. You can also search for past topics or…[Read more]
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