What you also don't see is that we spend a lot of time private messaging with PALS and CALS one on one, and emailing extra support with them.
So our time is limited, we are only human. I've made a conscious choice to continue supporting CALS and PALS and I have to work to pay a mortgage and run a 14 acre property and have 7 children. I also run other Australian support groups, work voluntary locally with CALS and PALS directly and other volunteer work on conservation issues. I spread myself as far as I can, and I truly feel for those who think they may have the disease. Always though one has to work with their doctors at the end of the day. I hope you understand that we are doing so many support things that if you think an answer is a bit short or curt, it is purely us trying to manage our time and responses across so very many, and cope with the constant losses of our members as this is always terminal. Tillie
Also if you look at the very top right of the forum screen, no matter what page you are on it states the sites mission very clearly - support community for individuals affected by ALS/MND.
All the PALS and CALS support each other, but because they are dying from a very degenerative disease that robs them of everything, there are a few of us that do prop a lot of that support effort up.
I could never have imagined what this disease does to the PALS and their CALS in even my wildest dreams, until I lived through it. I understand that you can't imagine what hell the people here are battling, even if you think you can, it is 1000 times worse than you could think.
Rob, you might have missed these words in the rules: "If you do not fit in one of these categories [PALS or CALS], then you are only a guest here….as a guest, please confine your questions to the DIHALS area."
We have a lot of active members, all of whom have little time, and many of whom must make extraordinary efforts to navigate, read and write. We serve them, first and foremost, with our limited volunteer time. Thus, we made the rules to serve our primary mission to our primary audience. Please respect that.
We found that it was confusing and counterproductive when persons without personal experience of ALS participated in discussions around the board. Our time is limited, and must stay focused. --Mike
Rob, you have a wonderful idea. You asked for my feedback.
Students, trainees, and future leaders in development are frequently re-tasked to new interests as their training progresses. So they must quit what they're doing and move on. Their use is suboptimal for product development.
Also, I don't think a defense contractor would allocate resources to a non-contracted project that doesn't fit the mission profile.
If you're building one unit, proceed. But if you want to benefit the ALS community, you'll need lawyers, fund raisers, and a road show.
That's why I advised you to develop this project through a venture capitalist. But if you want to keep your day job, that may not be possible.
Hi Rob, thanks for sharing your ideas. Of course, the end product would be useful. However, from a practical point of view, students can't do it--they quit work every couple of months; interns would not fair much better. The way to produce a complex and life critical controller with interface is for the person who dreamed it up to raise a couple million bucks from a venture capitalist (who also provides the management, which hires the technical expertise to actually develop the product based on your design). I have no connection to this sort of industry. --Mike
So I do think it would be great to dig deeper into these topics simply for educational purposes. Lets work through the myths and reality. Lets not give false hope but true hope based on solid facts. That's what I would really like to see happen.
My deepest sympathies to your friend who was diagnosed. I can't image what life must be like for them at this point but I'm a firm believer that hope is available to anyone that seeks it, regardless of circumstances. But my prayers are with you both! I would love to hear your friends diagnosis story sometime if you wanted to share it. It sounds like it could be one of the fringe cases that don't get talked about as often.
Thanks for your note. Best wishes to you and your friend!
I think if we talked about some of the reasons why symptoms are not consistent with ALS in a bit more detail then some of the anxiety of people visiting the board would subside. For example.. how is it that a clean EMG is definitively not ALS... I'm sure many have read stories where first EMGs were fine and later EMGs confirmed ALS. I had an EMG in July that came back clean but I decided to get a second opinion to be sure. I had another EMG by the new doctor in August. Again this was clean. In spite of 2 clean EMGs he referred me to an ALS specialist 2 hours away to evaluate me as well. I saw that specialist who did a 3rd EMG also came back clean. The ALS specialist still did not dismiss me.. he said lets monitor this and we'll have you come back. So clearly 3 different doctors with 3 different EMGs are not willing to rule out ALS at this point (yet the odds are in my favor that what I do have is not ALS).
Unfortunately telling someone with anxiety to stop being anxious is like telling a leopard to stop having spots. Because they are suffering from anxiety.. they are therefore anxious. But I've seen some very graceful comments to many of them saying I understand that you're scared but what you are describing is not ALS.
In my case I did feel like I was being dismissed rather quickly.. and unfortunately the last comment left was yet another "go live your life and, if you want, give us an update at your 6 month checkup" aka please go away. So it's disappointing because I think that there is a lot still to be learned. I'm not obsessed with having ALS, I'm not afraid I'm going to die, and I am very much living my life to the fullest that my body can currently support.
Thanks for your note P. I have been a bit frustrated with the posts myself. After having spoken with a couple of them directly through private messaging I've learned that they do have very good intentions, but it does leave many of us in the being diagnosed category out in the cold a bit. I think (and this is just my opinion) that what they may be doing is erroring on the side of statistics... and they are right... very few people ever get this awful disease and likely the majority of visitors to this site likely don't have it and in many ways have worked themselves up to thinking they may. So I think they're advice is to encourage them that what they are describing is not ALS. I'm sure you've read many of the posts where its likely a clear case of anxiety.
I read your posts yesterday and got very frustrated with this forum. It dawned on me why I have kept myself from posting. My feeling is that this forum is run by a few people with very firm stands. If my friend, suffering from ALS, had posted here 2 years ago, some would have said "I don't see ALS - this is not ALS" and so on. His symtoms did not fit the box the first year. Some are clearly making statements about diagnosis - by saying this is not ALS. They should be much more careful.
It also worries me, that the discussions about new medication in trials, are very narrowminded. You must in my mind to some extend support the pioneers. Or we will get nowhere. I say that with 20 years behind me involved in the industri.
On the other hand, I have read a lot of useful threads and found comfort. I have found http://www.alstdi.org/forum/ more up my alley. More friendly.
Sometimes the web server will select posts and messages to be moderated, due to URLs and certain keywords. We don't know what the keywords are. It's all rather frustrating but nothing we can do about it. Today the system was down a lot so it will take awhile to clear out the moderation queue.