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ALS topics: What are you looking for?
Our forum has been host to many discussions about ALS during the past few years. Some are “hot topics” reflecting what’s in the news. Other discussions are more basic, like sharing tips and recommended resources.
What topics would you like to see more discussion of? Research? Or treatments? Tips? Let us know and we’ll start the topic.
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8 Replies
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…also, think about what prompted you to join this ALS forum. What questions did you have?
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I have bulbar-onset and do not see much of this type of ALS. Does it progress to other parts of the body and how fast??
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I get cramps all the time and my one leg hurts – I have drop foot and my balance is bad. I found out on May 11.2023 How fast does ALS progress
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Lis, ALS seems to progress at a rate different for everyone – – our body’s reactions, our current health status, and what we’re doing to maintain our health… and on. Sometimes we’re so focused on every tick and tremble that we imagine it’s progressing faster than it really is.
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Hi Dagmar,
Has the forums ever addressed the question of home healthcare costs? I know it all depends on what one patient might need vs another’s needs. And, what one persons care giver can do vs another’s but is there any data that says on average a care giver needs X number of hours of help per day and that help costs X dollars per hour? It would help in trying to prepare for the future.
Thanks,
Luke
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This is a great question… I think there are statistics of how much it costs to have caregivers over the length of the patient’s life… but I’d be interested in if any of our members know of a resource that specifically addresses your question.
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I’m interested in alternative treatments. Maybe supplements or prescription medications that were FDA approved for other conditions, but may be helpful for ALS treatment.
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Hmmm… that might be risky in the long run Beth. It’s better to stick with approved ALS treatments. Why try something experimental and unresearched?
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