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pinkmoon11

Member
Joined
Mar 25, 2013
Messages
20
Reason
PALS
Diagnosis
12/2012
Country
US
State
IL
City
Springfield
Hi! My name is Kathy. In February 2012, while working at AT&T I noticed that my voice would shake when talking on the phone and it seemed I had to put a lot of effort into speaking. In addition, I was choking on liquids. I also had trouble getting up from a sitting position. To make a long story short, I was given the diagnosis in November 2012. And then the 2nd opinion in December..."unequivocally, this is ALS ." Wow! Never in a million years would this healthy,young 61 yr old have thought of that! But having the faith that I do, i know that God does not make mistakes. And that is what gets me through my day.

Currently, i can hardly speak, but i do have an ipad with Verbally that I can use. I use a bipap at night. I now have a walker, but I have fallen two times in the last couple months. I am going to have a feeding tube inserted in about ten days. My legs are so weak. I don't want to make the transition to a wheelchair, but it may be necessary. And.... I cry a lot. This is the most frustrating thing for me. Once i process the other phases, I am okay and deal with it the best I can. BUT, the crying just seems non-stop. Even if something is happy, I cry. I find myself turning down doing things with friends and family because of this. I have started on wellbutrin; but it is too early to see if it will help.

Does anyone else have these huge emotional outbursts? How do you handle it?

Thank you for taking the time to read this. My thoughts go out to all of you who are battling this disease.

God bless!
Kathy
 
Hi Kathy, I would ask your doc about Pseudobulbar palsy/syndrome, it is often part of ALS and other MNDs, it is defined as inappropriate or uncontrollable laughing/crying. My step father started with this early on even before the ALS diagnosis. I am not sure how it is for everyone, with him it comes and goes, some days it is terrible and goes on all day and other days you would never know about it, sometimes it is sparked by a started emotion and then snowballs out of control, other times it appears to be triggered when he is trying to form a word that he can't get out and other times it happens for seemingly no reason at all. Please do some research, talk to your doctor... there ARE medications to help with this and please don't let it stop you from spending time with your friends and family. It is embarrassing I know but explain to them what is going on and how you would like them to handle it when it happens (if I think my dad is really crying I let him cry for a bit and offer support, if I think it is the PBP I make a joke to try to snap him out of it, if that doesn't work we just sit quietly until it passes and I pat his back or hold his hand to let him know it is okay and I am there, if he is laughing I usually laugh too because I can't help it but I try to just go on the best I can with what we were doing until it subsides), I am sure they will understand and learn to live with it, life is so precious and short don't let a silly thing like this keep you from doing what you love while you can! Sending big hugs your way!
 
Hi Kathy,
I am still new here. I am sorry you have to be here but I wanted to welcome you. Please make the transition to the wheelchair. Your next fall could break bones. You certainly do not need that. As designdiva advised speak to your doctor about the uncontrollable crying. There are medications that can help. This forum is also a lot of help. So many good people here to help and offer support. (((hugs)))
 
Hi again. Thank you and i will talk to him about it. And i will keep plans!
 
I am still trying to get the hang of this. Thank you BOTH for your comments. I appreciate it a lot!
 
Hi Kathy,

I'm very sorry about your diagnosis, I truly am but, at the same time I am glad you've found us because there are many, many good people here on these Forums willing to help you, to give you good advice, to offer support, to comfort you.

Just remember that while you have ALS, it is not who you are. There is life after diagnosis. Focus on living with ALS and not dying from it. I know it is a lot easier said then done but try to focus on the people you love and the people who love you, on building more memories, on making the most of each day. Just take one day at a time.

Regarding the uncontrollable outbursts of laughing and crying it's called "Pseudo-Bulbar effect" and happens mainly to PALS diagnosed with Bulbar-onset (I am one of them, by the way) which affects the emotions, swallowing, chewing, production of saliva, etc.

There is a medication to control those outbursts of laughing and crying and its name is NUEDEXTA. It comes as capsules and you can request a prescription from your Neurologist or your Nurse at the ALS Clinic you attend to.


In regards to walking, I'm kind of concerned as you've stated that you've fallen several times even when holding onto a walker. That's worrisome.
If you're falling it means your legs are not very reliable for walking.
Trust me, you don't want to risk a bad fall and breaking your skull, or you neck, or hips, or arms or legs and then needing to be rushed through E.R. with a fracture, do you?

A wheelchair doesn't mean that you are giving in to the disease, on the contrary, you are being safe and you can still move around the house on it without fearing a bad fall.

Lastly, there are two good Applications for iPad than can tremendously helping you with talking, the first one is called "Speak It" and costs about $9.99, with it, you type what you'd like to say and it'll say out loud. The second App. is called "Proloquo2Go" and, although it's pricy when compared to "Speak It" ($189.99 through the Apple App. Store) it's worth its price because it has tens of symbols representing things like food, moods, places, etc.


Kathy, again sorry that you have this disease but glad you found this Forum.



Receive a warm welcome and a hug from me. :p:p:p


Carlos
 
Hi, just wanted to say hello. Hello! Sorry about the diagnosis. Welcome to the forums.
 
Welcome Pinkmoon,

Sorry you find yourself here - but we're a great group of folks just like you are! Indeed, 61 is young and you've got a whole lot of living to do!

I'm on Wellbutrin too, since six months. I take it because I was sleeping my my life away. Took about a month to kick in, and it's really working for me. Feel more like my old self.

Hope you drop in often - For venting, learning, sharing, laughing. Whatever you need it's here. If it's not, I'm confident someone will find it for you.:razz:
 
A very warm welcome to you Kathy. And I pray an abundance of grace and peace for you.
 
Hi Carlos! Thank you so much for the words of encouragement. I needed them!
You know I tried the Nuedexta and it didn't help. But i am a rather impatient als person :)
And so i am thinking of trying them again. About how long before they kick in? Thanks!
Have a blessed day! Kathy
 
Thanks everyone for the warm welcome! I appreciate it! My daughter wanted me to get on the forums; now i know why. You are very nice and we are walking this journey together in hope.
 
Indeed ... In hope! Whether we're walking, hobbling, wheeling - we are in this together!
There is, for me, an element of safety and serenity in numbers.

You gotcha yourself a smart cookie of a kid there Kathy!
 
Hi Carlos! Thank you so much for the words of encouragement. I needed them!
You know I tried the Nuedexta and it didn't help. But i am a rather impatient als person :)
And so i am thinking of trying them again. About how long before they kick in? Thanks!
Have a blessed day! Kathy

Hey Kathy,

Welcome back!:grin::grin::grin:

Your daughter was right about these Forums.


Kathy, Nuedexta takes several weeks to kick in. You won't see results overnight. You have to keep taking it until you start noticing how these "outbursts" of crying/laughing slowly start to wane. Another thing, if you stop taking it, these episodes of crying/laughing will come back with "a vengeance".

If you have problems swallowing capsules (I certainly have these problems myself) you can open the capsule and mix the powder inside with apple sauce so, you won't choke with caps.

You said you'll be getting the PEG-tube soon. That definitely will help you a lot when your swallowing by mouth becomes severely compromised.
You can still eat by mouth even when having the PEG-tube inserted, don't forget that.

Remember, if you have any questions, concerns or need help and advice, we are HERE for you.


Take care, my friend.


Carlos
 
Just wanted to chirp in here and say hi. You'll find lots of good feeding tube tips on member rose's blog. I got mine 2 wks ago. Went well and really happy i got it done. Cheers
 
Hi , Just wanted to introduce myself , I'm John and have had ALS for about a year. I am progressing slowly right now as I am still walking and driving . It is really great to have some place to go where so many understand . Thanks again for being here . God bless everyone of you.
John
 
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