11-28-2017, 11:14 AM
(11-27-2017, 02:47 PM)Linville Wrote: [ -> ]Thank you Rafterman for the detailed answer.Thanks, Linville. I had symptom's for about a 16 month's before getting my ALS diagnosis, and continued working. The symptoms were crazy. My hands and arms were quite numb and it felt like I was moving around someone else's limb's. I also had (and still have) fasciculation's (rapid muscle twitching) throughout my body and on my face. Fever's, incredible insomnia, severe tremor (can't hold a cup of water). And I won't even go into the pain level, as this disease causes each joint to separate from the muscles that are holding it in place. Probably why it remains the most dreaded diagnosis worldwide. I was going to work on 3 or 4 hours of sleep, 6 days a week. When they tell you have this disease, you need every bit of emotional strength that you can summon because you know that you are headed for paraplegia. My job was 32 miles away and I was forced to turn in my license as things got worse. That is when I pulled the plug. We may be making a trip to Germany to have more experimental treatment done. The goal now is to slow it down in the meantime and I believe that is working, to a degree. Still praying for a remission, which is extremely rare in ALS, but it does give some hope...... Yes, I know that all of the pioneer members on here are incredible. Before joining, I visited the forum nearly 400 times...to read posts and see how the members interacted. This forum is a league of it's own. I would not have joined it if it wasn't. I wanted a judgment-free zone, with respectful and knowledgeable people and that is exactly what I got. Many people on here are more knowledgeable than Ph.D.'s that I worked with in the field. It's extraordinary to find that in a forum. Everyone has been great. Like I was saying to Audrey a couple of post's up from this one, I am at fault for sometime's starting a thread that gives too little of the story upfront. That leaves member's with no choice but to presume what the missing information is. I know that all you guy's have a huge heart for people and dedicate massive amount's of time helping them on here. It's a true act of charity and those are rare these days. Didn't mean to bum anyone out with the disease talk, but you did ask about me leaving the job and I wanted you to know why. In a way. I felt bad leaving some of my older client's, but gave many my email and home phone number. I also left them in the capable hands of an experienced therapist who took my place. (Oh, thanks for telling me that longwinded is okay here! I don't know any other way).
Good luck to you .
I suppose that ur recent diagnosis has given you a desire to participate in a forum such as this, so do not be afraid of being long winded, that is okay.
Did you say that you retired before the diagnosis or just after it?
Did that cause you to want to retire?
With your knowledge you could help so many others that are in need.
Gently advising or suggesting.
Anyway just thinking on paper so to speak.
Again good luck, Rafterman and thank you for engaging in conversation and understanding especially,
ALL the Pioneers have good intentions in mind for members.
You might be surprised members enjoying discussions going very deep here.
remaining civil is critical as you know even if you think another is not, that can only lead to bad .
Enough rambling......have a good day.
Thanks again. RM
(11-27-2017, 06:15 PM)Popster Wrote: [ -> ]Nice thread Rafterman....and nice posts.
It is indeed a difficult and complex subject, and one well worth discussing.
None of us knows it all when it comes to either food or psychological motivations.
Than you, Popster. It is always good to get positive feedback about a thread, especially from a pioneer member. Much respect to you, Audrey, Linville, Fireplaces and all the other's who have given me a warm welcome on here! RM
I should have been more specific when I used the word "license". It was my driver's license that I was forced to turn in. A physician in my state is compelled to report to the DMV certain patient's (epileptic's, those with MND's., etc) and that's how they got wind of my disability and yanked my driver's license. I didn't want anyone to think that they took away my psychotherapist's license just for been sick. That would be pretty bad, lol. You all have a great day.