Newly diagnosed

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What's the suppress secret.. People around are starting to fall asleep when I yawn..
 
>What's the suppress secret.

I just force my self not to open my mouth -- it is hard, but can be done ...
 
When I yawn, my jaw locks open, takes a minute to shut, scared it's going to stay that way, would hate to have my mouth wide open all the time, I get throat and tongue cramps too, no stopping it once it starts.
Janie
 
Shirlyanna- I agree with everything said. Conserve your energy as much as possible - you will pay the price with your energy level. So sorry you have to join us but I assure you that this is the best place to be. So many wonderful,compassionate and caring Pals and CALS. I would be lost without all of them. We will all be here for you.

Debbie
 
Welcome to our forum...there are a lot of really great people on here, with good advice for the newbies. Many of the comments have been good! I have only been aboard for 4 or so months.......and learn something new everyday, especially in regard to human compassion.
I won't give you any advice beyond learning to pace yourself....as well as learning to deal with your new reality, and keep living life.:smile:
 
>I won't give you any advice beyond learning to pace yourself....as well as learning to deal with your new reality, and keep living life.

that and be prepared for an emotional roller coaster -- just go with the flow, vent or get angry here -- we understand.

Max
 
I was diagnosed with ALS a week or so ago even though after 2+ years my entire right side still seems normal and nothing in my stomach/chest area on up is affected either. (They said my pulmonary test made "the dials spin"). I got my nerologist to admit that ALS is, to him at least, a "default" status. That is; when in doubt. . . You know, with ALS no treatment is required. I meant to ask him if he ever diagnoses a patient as having one of ALS' "copycat" diseases. I wonder this because all the reasons they have given me for my diagnosis have, upon researching them, turned out not to be pertinent to a firm diagnosis. I'm saying all this because I notice at this forum that many people with treatable conditions such as MMN were first diagnosed with ALS. If you are not sure don't give up!
 
I do the same, my tongue cramps, jaw locks. I usually just go to sleep.
 
>I'm saying all this because I notice at this forum that many people with treatable conditions such as MMN were first diagnosed with ALS. If you are not sure don't give up!

damned right -- never trust one opinion. Always get a second from a rigorous ALS clinic -- there are many, I went to Stanley Appel's in Houston. No kidding, this is your LIFE's final diagnosis so it better be definitive!
 
Try keeping a cough drop or peppermint tucked in your cheek. Works for me to keep the yawns away. It also seems to help me have less throat spasms. But be careful if you have troubles manipulating food. Choking is not fun

It will take time to adjust. But visit here often, you will find friends.

Tracy
 
Ah yes, the yawning! Before my husband's diagnosis he was yawning all the time. I went to "Dr. Google" to ask what could be causing it but didn't come up with anything definitive. Fast forward about six months, now he was yawning AND slurring his speech. So I googled both symptoms together and WHAMMO, that was the first horrifying moment I saw the term ALS. The rest is history. He was diagnosed Bulbar Onset ALS 2 and 1/2 years ago. Incidentally, he hardly yawns now at all now!
 
Hi everyone,

I'm also new here, newly diagnosed (6/2 with a second opinion confirmation 6/10). And as many have noted, I yawn like I never have before! I'm on Neudexta for pseudobulbar affect and I assumed the yawning was due to the meds, but it sounds like maybe not...

Not to steal the thread, but I was wondering if someone could answer a question: some days I have very definite weakness in my right hand (especially the thumb and index finger) and in my left foot and leg. And then other days, while there's still weakness, it doesn't seem AS weak.

Was that anyone else's experience in the beginning stages, or is this (the varying level of weakness) one of those issues that is unique to me?
 
I believe yawning is part of this disease, as all 5 neurologists that Tim saw asked him about yawning, it may be an upper motor symptom.
Early in Tim's disease he would have good days and bad days, and usually the bad days were after he did too much and it took awhile for him to recover. Be careful that you are not over doing it, or be ready for the down day following.

Paulette
 
>And then other days, while there's still weakness, it doesn't seem AS weak.
>Was that anyone else's experience in the beginning stages, or is this (the varying level of weakness) one of those issues that is unique to me?

hi Mark, Paulette is right: as I learned in physical therapy before my diagnosis they would try to help me to build up the muscles in my left hand and it only took minutes for the muscles to fatigue. Then after resting some period of time they would work again for a while.

What you're experiencing is most likely that on a bad day you've used your muscles more than you realize and they are weak. Later after resting they may recover some of their earlier strength. This happens to me dramatically now. If I try to use my left arm or hand for anything like holding our hose it will become totally useless in minutes.

I might have said this before, but ALS sucks!
 
Try Tracy's trick. Yawning is a symptom. I yawn every time i think of it. Ten times since starting this post.. I look at it as therapy. Just range of motion exercises for my jaw and increasing my lung capacity through breath stacking, which i can't do otherwise. Of course, not so convenient in public.

As for the rest, I'm sorry you have to join us, but welcome just the same. I recommend spending the most energy on the things you've always wanted to do, or the things you will miss the most. And read My post here. It's a collection of the best advice I've found :

https://www.alsforums.com/forum/new...t-diagnosed-today-6-17-14-a-2.html#post302440
 
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