@sonsu
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Sonsu started the topic Hospital Beds in the forum Living With ALS 2 months, 3 weeks ago
Are any PALs having hospital beds at home. Insurance seems to cover semi electric. Is it better to get fully electric out of pocket.
Any thoughts/ experience you can share will help.
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Sonsu started the topic Swollen Feet in the forum Living With ALS 4 months, 1 week ago
Is anyone dealing with Swollen feet and how do you deal with the issue.
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Sonsu replied to the topic Loose bowel movements in the forum Living With ALS 4 months, 1 week ago
Thanks George. How long you are having this issue.
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Sonsu started the topic Loose bowel movements in the forum Living With ALS 4 months, 2 weeks ago
My husband is dealing with loss of appetite and loose motions for over a month now. This leads to overall decline. Is anyone else going through this.
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Sonsu replied to the topic Feeding Tube and Syringe in the forum Living With ALS 6 months ago
Feeding tube my husband got is compatible with Enfit syringe. But we did not get right supplies from hospital as well as our Doctor. It took us some time to figure this out. Plus it was a holiday weekend when my husband got discharged from hospital. So it was very stressful.
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Sonsu started the topic Feeding Tube and Syringe in the forum Living With ALS 6 months, 1 week ago
Is anyone having trouble with new type feeding tube which are incompatible with syrenges
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Sonsu replied to the topic Stomach Bloating in the forum Living With ALS 6 months, 2 weeks ago
Not sure what lip seal means? Is there anything particular she suggested about head position
Thanks
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Sonsu replied to the topic Stomach Bloating in the forum Living With ALS 6 months, 2 weeks ago
What is ST?
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Sonsu started the topic Stomach Bloating in the forum Living With ALS 6 months, 3 weeks ago
Is anyone having persistent Stomach bloating and dissented stomach. If yes what helps
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Sonsu replied to the topic What's the latest news on AMX0035? in the forum Research Topics 9 months, 2 weeks ago
We are in US in New Jersey. My husband is diagnosed with ALS for little less than year now. He used NIV at night and during day when he naps. Hence was interested if anything that can improve lung functioning.
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Sonsu replied to the topic What's the latest news on AMX0035? in the forum Research Topics 9 months, 2 weeks ago
Hi Steve,
What is LVR kit. Are you using NIV. Is LVR kit in addition to NIV? How does it help you.
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Sonsu started the topic Skin pigmentation/ dark patches in the forum Living With ALS 1 year, 4 months 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 1 year, 5 months 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 1 year, 5 months 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 1 year, 5 months 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 1 year, 5 months 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 1 year, 5 months 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 1 year, 5 months 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 1 year, 6 months 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 1 year, 6 months 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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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]