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Moderator emeritus
Sep 17, 2006
Learn about ALS
New England
This is for everyone who feels frantic about their symptoms, or questions if they have the right to ask for help. It is just a bit of my own philosophy, so take it for what it is worth. It may help, or it may not, but I started thinking about this years ago when we were on vacation in Canada.

We were on our way to Ontario, and I decided to get a bit of flavor for the region by taking a lesser highway. I did not know about the canals and locks of the area, so imagine my surprise when the road before me lifted up and a large tanker ship came floating by, close enough it seemed for me to touch. On its deck, dressed in a sailor uniform from France, was a sailor taking a photograph of me with my mouth open. I leaped out of my car and grabbed my camera, but my young son was red-faced.

"Mom," he protested, "People will think we are tourists."

"Honey," I replied, "We are in Ontario, Canada. Our vehicle has license plates from Massachusetts, USA. I think they know we are tourists. And if we cannot act like a tourist at this point in time, then when?"

Years later my daughter was new in her career and recently promoted, The bank she worked for was gathering a group to march in the 4th of July parade. I went along, and met for the first time the friendly folks she works with. We were a subdued group, walking and chatting quietly. Eventually I announced that we should maybe make some noise, so a group of us began singing patriotic songs. When I saw my daughter's discomfort, however, I regretted this. These might be my new friends, but they were her co workers and this was her career.

The next day I told some friends about the experience and they reminded me of something I discovered back on that trip to Canada. "But it was a parade!" Someone said. "If you can't call attention to yourself while matching in a parade, when can you?"

It is all about timing. If you cannot ask for help when faced with a debilitating illness, then when? By contrast, timing is everything. If I got all worked up about my symptoms (some of which felt worse 2 years ago than they do now, BTW,) then I'd have wasted 2 years and not enjoyed the birth of 3 new grandchildren.

At the end of the day, I guess all I can do is prepare for the worst but hope for the best. :-D
Hi Cindy, i like your different life situations......... When i was younger i spent a lot of time caring about what others thought about me, now i have been forced to not care and that is one of the good things about my illness...... I get freaked about my different experiences but i dont talk about them to friends or family because i do not want to upset them... It is so cathartic to get them out on here. If i did not have this website i do not know what i would do. The first time my mom put together the way my face, arm and leg had changed with why i was going to a neurologist she almost cried. So i dont point out the twitching or stiffness, but the fatigue is all too apparent! Anyways, i have found that people gravitate to me a lot more since i developed a nonchalant attitude. I like to have fun whether i look silly or not! You live in Massachusettes? I got to go to Boston when i went to the Community College. I LOVE BOSTON, i am very much a Boston person over New York City, even though i grew up in N.Y. I love the education atmoshpere, it's like you can feel all ambition and creativity in the air. Your story of Ontario reminded me of when i was a little girl and my school used to take field trips in the winter to the canals in Ottawa. We would skate and look at all the different ice sculpture, then we would get hot cocoa. I was very active most of my life. Did you ever visit a place called Upper Canada Village? We used to go there for field trips, i loved it.

Yours is a good question to ponder and each of us will make our own decision based on a variety of factors. As you know, I have debated whether to continue to run more diagnostic tests since my initial 2 visits to the local neuro. I decided against running more tests. The formal diagnosis of ALS is based on the presence of UMN, as well as LMN signs, in three regions. I may have ALS, but before it is clinically present in 3 regions, this may take time. By then, it will be quite apparent to me that I have ALS. Meanwhile, I could be spending large amounts of money to run more tests. I figure that money can be better used for other reasons. Am I just in denial?

As I have written before, it is difficult just to sit tight and wait, however.
Thanks Cindy, ... a little bit different take on what you wrote though, (and I'm just so sad now!) I've been working very very little, just enough to stay on the "active" employee list. It kept me at active rates for insurance, etc, plus I love my job. I kept thinking the tide would turn. So, I ran out of sick time ages and ages ago, and have only been paid for the trips I worked. Our airline has the highest pay scale for flight attendants right now in the industry, but that does me little good when I don't work more than a trip or two a month. So, I was planning on going out on disability after my doctors appointment at Hopkins next week, and I had a trip tomorrow, a very nice one leg to Cancun, one leg back the next day. But the question really was for me, if not now, then when! Because the very moment I showed up at work, that was another work month for me, that my disability payments will be based on, (last 12 month period) and I would be earning so much less for this July, than last, so, I did it, I called out for the month, and that of course will probably be it for me and work. Timing, like you said, is everything, and it would have made much more financial sense to have done this months and months ago, but I kept hanging on, thinking "next month" I wouldn't be so exhausted, something would change for the better. ... Plus, the airline industry is suffering, just listen to the news and you can't miss it. Who knows what will happen with my particular airline next? We're the only full service US carrier that hasn't filed for bankruptcy since 9/11, , and if that were to happen, it might possibly affect how I am to be paid if I were to wait to go onto disability after the fact. We recently were offered an early out retirement package, but it was a joke, so that wasn't a viable option either. So I did it, I'm hoping for the best, but preparing for the worst, and I don't like it one bit. :cry:
Wow,I know what you all mean about how much this stinks. Last week I sat in my boss's office, chest crushing like someone was sitting on me, and he offered me additional duties (with a pay raise.) My face, I am sure, said "Are you nuts? More work?" but my mouth said, "Of course." Because if I go out on disability my payments will be based upon my last salary.

But even though it makes sense financially, this plan requires my body to cooperate. And for the last two years I have not been in charge of my body. LOL, it has a mind of it's own. :-D

I want so bad for this to be MG. I want to take the steroids or whatever they give you for MG and then be on good to go. If wishing could make things happen we'd have no need for a board like this. thank goodness we found each other!
[QUOTE=rose;47188]So I did it, I'm hoping for the best, but preparing for the worst, and I don't like it one bit. :cry:[/QUOTE]

Hi, Rose ... I really sympathize with your situation, and the rock and the hard place you were stuck in. The problem is we have to live life forward (and usually blindfolded), and we never have enough information to really KNOW the best moment for these decisions until long afterward.

But it sounds to me like you made the smartest possible choice out of all the possibilities and with the information available to you, so congrats for having the guts to make the call based on your thorough assessment of the situation. You done did good.It was a big step, but one that had to be decided.

Hang in there!
Disability or Not?

I could have went disability in 05'. The neuro/phy. therapist that was treating me at the time said he would back me 100% for it. I had not been formerly diagnoseded. with ALS at that time. My wife wanted me to take it but like you, I too liked my job and thought that working would help me mentally and somewhat physically and to be truthful I was scared and a little embarassed at the thought of going on the dreaded "DISABILITY". Even though I have worked all my life and paid SS, I still felt like I was taking something I didn't deserve. But, believe, we do deserve it.
I was finally diagnosed with ALS in July of 06', but I still continued to work until August 07', trying to tough it out. My speech was starting to really get bad, so my boss finally let me know that it was time to go. I was already 63 years old so I started drawing SS retirement pay immeadiately, but even with the official ALS diagnosis it was still 5 months before m,y disability came through and I could go on Medicare.
The point I'm trying to make is don't let your pride or false hope that things are going to get better cloud your judgement on going on disability. Even though finding a cure for ALS is coming, it will probably too late for most of us, so get what you're due as soon as you can.
Good point Gordon, I'm 55 and still working full time. It's harder to type now and my speech is getting effected. This morning I had major trouble turning the key to start my car! Finding the 'right' time to quit is hard.
Thank you each of you! And, everyone is so right, its hard to know what the right time is, as hindsight is 20/20 but foresight is quite another story. I think that mentally I realized quite some time ago that I was sabotaging myself financially by working such a reduced schedule, but each time after I'd recover from a trip, it would seem to me that maybe I was imagining how much the previous one had wiped me out, and that maybe a change was just on the horizon. I don't think delaying the decision had as much of an impact on my SSI, as it will for disability insurance through my employer, as SSI looks at our entire life of work and earnings, as opposed to my disability insurance that is based on just the last 12 months of service. The earliest I can retire would be at 55, and I'm 52, so that wasn't a choice either, and, like I'd said earlier, the "early out" option that was just offered to us was not viable. I was at the airport today to drop off my better half (he's a pilot, and yes, I know, we're such a cliche` LOL) and I tried to tell myself I wasn't going to miss it ~ the traffic... wall to wall people in the terminal... delays... bad weather... on the drive in Newark often times just smells bad (something about air inversions) ... our uniforms are outdated ~ and anything else I could think of to make it seem like an easier decision. It must have helped a little because I didn't cry, and I cry at almost anything right now...
I agree with all the advice you've been given, Rose. Hindsight does not really help, does it? I cannot figure out how you've doen the job anyway, LOL. Just being a passenger, with my symptoms, wears me out and I don't have to dress up, wear heels, and serve snacks. :-D
I wonder a lot about this question of long-term disability. I don't particularly love the job I have now (I have had other jobs in the past that I liked a lot more!), but I want to work as long as I can.

I work with computers, so most of my physical symptoms don't interfere that much (although by the end of the day I can barely type with my right hand), but the fatigue I feel all of the time is clearly reducing my productivity. And at the same time, the job seems to become more and more demanding, and I can easily imagine a point in the future where I just can't keep up.

I have not been officially diagnosed with ALS, and I am concerned that the lack of 'official' diagnosis will rule out the disability option, if it becomes necessary.

I haven't talked about my medical problems with anybody at work, but from reading the company websites that describe the LTD insurance, it is very unclear whether I would qualify for disability. On these forums, I have read about people like me in the process of being diagnosed who lose their jobs, and I wonder if this could happen to me.

What have other people found about options that are available before diagnosis?

Thanks for your help, I really appreciate the support I feel from reading these forums!


I, too worked at a desk and used a computer. But, I also had to use the telephone a lot and my speech had gotten to where people couldn't understand me on the phone. Just because you don't have an official diagnosed. of ALS doesn't mean you can't qualify for SS Disability. If your doctor backs you for it you can get it. The thing about it is not guaranteed and if you do get it, it will take 24 months. If and when you get an official diagnosed. of ALS it will only take 5 months.
... and I don't have to dress up, wear heels, and serve snacks. :-D

LOL, If you only knew! AND for years I only worked business/first class, so it was a regular meal with courses most of the time. My very last flight I worked, I lost my oven gloves (little thin work gloves that are great for the aircraft ovens) and it was so irritating, I've had them for the longest time. So, I bought a new pair, and now they're in with my gardening supplies :( .... it is more than just liking ones occupation, it is a self image thing too, I think. I've had offers for help and advise having to do with the technicalities of applying by a couple of the board members here, and I really truly appreciate it!

Have a nice Independence Day weekend everyone. :)
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