Recent content by Greeneyes

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    Dad just diagnosed

    Interesting that you mentioned your dad’s diagnosis after 2 surgeries. My brother who has ALS was diagnosed after he had two total hip replacements a year apart. I always wondered if it had some connection.
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    Sores in mouth

    I just talked to my brother’s wife and he is now on Nystatin. So it may be Trush. I hope it works. It seems to be very painful. He wears a full mask. I will check to see if there are alternatives to this. He does have the humidifier on his machine.
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    Sores in mouth

    Help. Any suggestions for treating sores in mouth from dryness and using non invasive ventilator most of the time. My brother is having a terribly sore mouth and can’t find anything to help.
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    Emotional needs of PALS

    Nikki he is very strong in his faith and has great family support. He has talked with his hospice team about the last stages. I know he thinks about this everyday. I just want him to find some joy as he continues his journey. Thank you.
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    Emotional needs of PALS

    Can anybody give me some advice on how to respond to my brother with ALS? It’s been one year since he was diagnosed. On tube feedings only and uses his ventilator most of the time. Using cough assist and suction frequently. His daily thoughts are what happens when I can’t breathe. He does...
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    Intimacy and ALS

    Hospice is a wonderful service. My brother who has ALS is on hospice. He has several services at this time through them. Acupuncture as needed, massage therapist, nursing,social service,spiritual services. It’s wonderful for him to have this interaction with others. His wife works full time...
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    Compensation for CALS

    Thank you. I will mention this to my SIL.
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    Compensation for CALS

    Does anyone know if in the state of Michigan if CALS can be compensated for care giving? My sister in law who helps with the majority of cares is the primary care taker of my brother who has ALS. She works at home for the health benefits and provides care. I know this is a very difficult...
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    Excess mucus/phlegm

    My brother who has Bulbar onset ALS has a terrible time with getting his phlegm up. They have increased his tussin liquid through tube to 2x day. I have encouraged him to use his cough assist more. I don’t know why he doesn’t use it more. Also has a suction machine to help with saliva and...
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    PALS passed away

    I am so sorry for your loss. May you find comfort in your family, friends and faith.
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    Saliva & phlegm

    My brother who has ALS has been having trouble with a lot of phlegm that’s board for him to cough up. He uses the suction machine as needed says it helps some. He is now on a medication patch to help slow down secretions. He said he was having some dizziness with so took the patch off. Will...
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    Not being able to eat/drink

    My brother ‘s Dr. Has suggested Botox to help with secretions and phlegm which has been having a problem with. Is there anyone else who has tried the Botox with good results. I would hate to see him try it and have more trouble with speech and dry mouth.
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    Relyvrio update

    My brother who has ALS is currently taking Riluzole and Radicava. Is there a criteria patients need to meet to be placed on Relyvrio? Just wondering why they have not prescribe this medication for him? He has progressive bulbar palsy ALS.
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    Advice on getting in/out of bed safely

    I agree. I think a physical therapist or occupational therapist can be a great resource for a home evaluation. You can get an order from your Dr for a home evaluation so the therapist can see you in your own environment and make suggestions for safe transfers.
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    Traveling with ALS family member.

    Just wanted to let everyone know everything went pretty well with our family reunion. My brother who has ALS traveled by plane with family members from Michigan to Las Vegas. He was pretty tired the first night, and had some difficulty breathing, but used his ventilator and his nebulizer. His...
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