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Patricia

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@pakeener

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    Patricia replied to the topic EXCESS MUCUS in the forum Living With ALS 7 months, 1 week ago

    Thank you, Gail for your input.  I take Glycopyrrolate and  have both machines. I have an appointment with my ALS team on September 1.  I will most definitely ask for anything that might give me some relief.

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    Patricia replied to the topic EXCESS MUCUS in the forum Living With ALS 7 months, 1 week ago

    Thanks, Debbie. I have and use a cough assist device and suction machine.

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    Patricia replied to the topic EXCESS MUCUS in the forum Living With ALS 7 months, 1 week ago

    Thank you Bill! I will look into seeing if I can possibly get a prescription for ipratropium bromide.

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    Patricia replied to the topic EXCESS MUCUS in the forum Living With ALS 7 months, 1 week ago

    Thank you!

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    Patricia started the topic EXCESS MUCUS in the forum Living With ALS 8 months, 1 week ago

    I AM EXPERIENCING MUCUS IN MY MOUTH 24 HOURS A DAY. IT APPEARS TO BE COMING FROM MY NOSE.  IT’S THIN, BUT IT NEVER STOPS. IT ACTUALLY COATS MY NASAL PASSAGES MAKING IT DIFFICULT TO BREATHE AT TIMES. I’VE BEEN TO AN ENT DOCTOR. OF COURSE, HE DIDN’T SEE ANYTHING. MY TEETH ARE ALSO CONSTANTLY COVERED, FORMING A GEL ON A PERMANENT RETAINER I HAVE.

    I…[Read more]

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    Patricia replied to the topic Are you celebrating anything special this summer? in the forum Living With ALS 9 months ago

    If God allows me to, I will celebrate my 64th birthday on August 1st and my 43rd wedding anniversary on August 25th.

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    Patricia replied to the topic A cure and hope for ALS (also wanting to know about treating excess saliva) in the forum A​ ​Forum​ ​for​ ​ALS ​Caregivers​ 9 months, 1 week ago

    My neurologist prescribed Scopolamine patches. They were actually working but after using only 2 patches, my husband insisted that I no longer use them. They caused me to have psychotic behavior. I rambled all night long, thought that people were in my home that were not, and my personality was totally changed. My husband had to watch me all night…[Read more]

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    Tom Hehir and Profile picture of PatriciaPatricia are now friends 1 year, 8 months ago

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    Ginger and Profile picture of PatriciaPatricia are now friends 1 year, 8 months ago

  • Profile picture of Patricia

    Patricia started the topic Burning Sensations in the forum Living With ALS 1 year, 8 months ago

    Does anyone else experience intense burning sensations? I have only recently started experiencing them. I contacted my neurologist and was prescribed Gabapentin. After reading all of the possible side effects, I decided not to take it. I’m taking extra strength Tylenol rapid release capsules instead, but it’s really not effective.

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    Patricia replied to the topic Member Check In in the forum Living With ALS 1 year, 9 months ago

    I am grateful that I have not lost the ability to communicate, walk or take care of my personal needs. I’m also thankful that I am able to continue driving at this time.  I thank God daily for things being as well as they are!

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    Patricia replied to the topic What vital Question to ask Neuro on Friday?? in the forum Diagnosis​ ​Information​ ​and​ ​General​ ​Questions 2 years, 1 month ago

    John, thanks for sharing this information. It gives me a little hope knowing that some ALS patients can continue to be mobile for 16 years. One of the biggest fears about this disease is the fear of the unknown!

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    Dagmar Munn and Profile picture of PatriciaPatricia are now friends 2 years, 2 months ago

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    Amanda and Profile picture of PatriciaPatricia are now friends 2 years, 2 months ago

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    Patricia's profile was updated 2 years, 5 months ago

  • Profile picture of Patricia

    Patricia replied to the topic Questions for your medical team in the forum Diagnosis​ ​Information​ ​and​ ​General​ ​Questions 2 years, 5 months ago

    I was seeing a neurologist who could not diagnose my case and was referred to a large medical center in Texas.  It took three months to get an appointment with the neurologist there and it was a video visit. About three months later, I went for an EMG followed by another video visit.

    The doctor said, “You have ALS.  You need to get a port put i…[Read more]

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    Patricia became a registered member 2 years, 5 months ago

    • Profile picture of Dagmar Munn
      Dagmar Munn replied 2 years, 5 months ago

      Hello Patricia,

      Welcome to the forum! I am one of the forum moderators, as well as a person who is also 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]

    • Profile picture of Amanda
      Amanda replied 2 years, 5 months ago

      Hello Patricia, 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 l…[Read more]

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