@sonsu
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Sonsu started the topic Skin pigmentation/ dark patches in the forum Living With ALS 6 months, 2 weeks ago
Has anyone experienced dark patches/ pigmentation on skin since diagnosis.
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Sonsu replied to the topic Tracheotomy in the forum Living With ALS 7 months, 1 week ago
<p style=”text-align: left;”>Thank you Jim. What is the monthly cost of nursing care you get and how much of it is covered by insurance.</p>
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Sonsu replied to the topic Tracheotomy in the forum Living With ALS 7 months, 1 week ago
Thank you Mike. What is monthly cost of nursing care you get and how much of it is covered by your insurance.
Are you based in US.
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Sonsu replied to the topic Tracheotomy in the forum Living With ALS 7 months, 1 week ago
Thanks for sharing your experiences. Post surgery is feeding is completely through tube? Also is there 100% loss of speech? Are you still having mobility or on wheel chair.
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Sonsu replied to the topic Applying for disability and medicare in the forum Living With ALS 7 months, 1 week ago
<p style=”text-align: left;”>Thank you Lisa. My husband does have long term disability with his employer. To the extent he gets Social Security disability benefit does his LT Disability carrier pays less?</p>
From the time you inform your employer how long did it take you to start getting disability benefit from employer policy provider. How does…[Read more] -
Sonsu started the topic Applying for disability and medicare in the forum Living With ALS 7 months, 3 weeks ago
My husband diagnosed 3 months ago is working full time at this time. We want to know our options regarding how and when one applies for medicare. He is planning to take long term disability from work when he is not able to work. Want to know timeline for applying for social security and medicare.
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Sonsu started the topic Tracheotomy in the forum Living With ALS 7 months, 3 weeks ago
<p style=”text-align: left;”>Anyone on the forum has done the surgery or is contemplating of doing it. If anyone has what is life after surgery</p>
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Sonsu replied to the topic Clenbuterol – trial NCT04245709 by Dr Bedlack in the forum Research Topics 8 months, 2 weeks ago
<p style=”text-align: center;”>From where do you buy Clenbuterol.</p>
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Sonsu started the topic ALS onset with effect on breathing first in the forum Living With ALS 9 months, 1 week ago
Who on this forum has onset of ALS which impaired breathing function first and how it has declined over course of disease. My husband is recently diagnosed and is able to walk, talk and speak and breath okay in sitting standing position but can not lye on back without bipap machine
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Sonsu started the topic Sodium phenylbutyrate powder in the forum Living With ALS 9 months, 1 week ago
Hi,
Is anyone here taking this medication and paying for it out of pocket? We are currently paying $700 for monthly supply. Is anyone has source where it is cheaper than this.
Thanks
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Sonsu started the topic Riluzole and Radicava in the forum Living With ALS 9 months, 1 week ago
Anyone here is on Riluzole and Radicava both and how is it working for you.
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ASOKAN and
Sonsu are now friends 9 months, 1 week ago
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NJGuy and
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Sonsu replied to the topic Riluzole side effect in the forum Living With ALS 9 months, 2 weeks ago
Thanks Bill. Will try.
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Sonsu started the topic Riluzole side effect in the forum Living With ALS 9 months, 2 weeks ago
Who is here on Riluzole have severe stomach upset and lack of appetite after few weeks being on medication and did it get better
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Sonsu became a registered member 9 months, 2 weeks ago
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Hello Sonsu,
Welcome to the forum! I am one of the forum moderators and a person 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 discussions by typing a…[Read more]
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Hello Sansu,
I would like to personally welcome you to the ALS forum. I’m Amanda, one of the co-moderators of the forum. ALS is a dreadful disease and we all want to understand it better, and find a cure!!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 A…[Read more]
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Good morning Sonsu,
My understanding is that a law was passed that people with ALS and similar diseases do not have to wait the mandatory 6 months to collect disability. After they complete the application and the process, they are immediately eligible. Regardless, please verify all information. “Most people can apply online on the SSA’s w…[Read more]