Kohler
Active member
- Joined
- Jul 14, 2010
- Messages
- 41
- Reason
- Learn about ALS
- Country
- US
- State
- WV
- City
- Fairmont
I have been coming here regularly for the last several weeks in search of information and support, and thankfully in my family’s case we have at this point ruled out ALS. As my sister continues to search for a diagnosis, I plan to keep visiting in order to keep learning and, most importantly, to keep up on the many wonderful people I’ve met here.
However, for those of us who do eventually rule out ALS, here are some observations I’d like to share about this part of the forum:
1) Having searched and read here quite thoroughly, I’ve come across quite a bit of posts from regular members expressing frustration about people coming here for a diagnosis, posting non-ALS symptoms, etc, including a thread about shutting down this part of the forum altogether. Although of course there are as many reasons for coming here as there are people, it’s my perception that although it’s natural for most people to frame a first post in the form of questions, symptoms, etc., a lot of us come here not so much because we think or hope we’re going to get a definitive diagnosis, but to gather as much information as we can, and MOST important, for the human contact, support, and comfort. Unresolved medical issues can leave one feeling very disoriented, frightened, and alone. So, my advice for the regulars with a great deal of knowledge and experience is to perhaps focus less on the diagnostic angle (which just seems to frustrate the people providing the information AND encourage those who may have an unhealthy fixation on their symptoms) and concentrate more on the support/comfort. For me, anyway—and please remember, that’s the only point of view I’m representing here—the most helpful posts were from people who simply shared their own experiences and/or provided an example of hope and support in case an ALS diagnosis does come.
2) On the flip side, new members, please be aware that in my short time coming here I'd say that on average there have been between 1-3 posts PER DAY describing similar symptoms, situations, etc (my own included). In general, the same handful of members come to this section to answer posts and offer support, which means that they regularly answer the same types of posts many, many times. On some occasions, the original poster disappears after only one or two posts, or keeps coming back with the same questions over and over again (although I hope the regular posters keep in mind that this does not consititute the majority). So, be aware of the time and effort that people are putting into answering your posts, and also know when to let it go.
3) Even though many people who visit this forum may be facing large medical bills/expenses (my own family included), I would like to encourage people to donate (see the link in the upper right hand corner; you can donate through PayPal, which is secure and easy). Remember, not only is the forum all volunteer, but most of the people maintaining this site do so despite serious physical limitations/challenges. Imagine if every person who came to this section of the forum seeking advice or support would donate even a dollar or two? Every little bit adds up to buy a piece of equipment or help pay for maintenance costs.
Finally, thanks to all the members here who have been so helpful, patient, and kind. After all, that’s what it’s really all about.
However, for those of us who do eventually rule out ALS, here are some observations I’d like to share about this part of the forum:
1) Having searched and read here quite thoroughly, I’ve come across quite a bit of posts from regular members expressing frustration about people coming here for a diagnosis, posting non-ALS symptoms, etc, including a thread about shutting down this part of the forum altogether. Although of course there are as many reasons for coming here as there are people, it’s my perception that although it’s natural for most people to frame a first post in the form of questions, symptoms, etc., a lot of us come here not so much because we think or hope we’re going to get a definitive diagnosis, but to gather as much information as we can, and MOST important, for the human contact, support, and comfort. Unresolved medical issues can leave one feeling very disoriented, frightened, and alone. So, my advice for the regulars with a great deal of knowledge and experience is to perhaps focus less on the diagnostic angle (which just seems to frustrate the people providing the information AND encourage those who may have an unhealthy fixation on their symptoms) and concentrate more on the support/comfort. For me, anyway—and please remember, that’s the only point of view I’m representing here—the most helpful posts were from people who simply shared their own experiences and/or provided an example of hope and support in case an ALS diagnosis does come.
2) On the flip side, new members, please be aware that in my short time coming here I'd say that on average there have been between 1-3 posts PER DAY describing similar symptoms, situations, etc (my own included). In general, the same handful of members come to this section to answer posts and offer support, which means that they regularly answer the same types of posts many, many times. On some occasions, the original poster disappears after only one or two posts, or keeps coming back with the same questions over and over again (although I hope the regular posters keep in mind that this does not consititute the majority). So, be aware of the time and effort that people are putting into answering your posts, and also know when to let it go.
3) Even though many people who visit this forum may be facing large medical bills/expenses (my own family included), I would like to encourage people to donate (see the link in the upper right hand corner; you can donate through PayPal, which is secure and easy). Remember, not only is the forum all volunteer, but most of the people maintaining this site do so despite serious physical limitations/challenges. Imagine if every person who came to this section of the forum seeking advice or support would donate even a dollar or two? Every little bit adds up to buy a piece of equipment or help pay for maintenance costs.
Finally, thanks to all the members here who have been so helpful, patient, and kind. After all, that’s what it’s really all about.
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