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tawill

Member
Joined
Oct 19, 2014
Messages
20
Reason
PALS
Diagnosis
10/2014
Country
Uni
State
IL
City
Vienna
Diagnosed with bulbar onset MND this month. Go to first visit in ALS clinic on Tuesday. Have Riluzole but haven't started it yet due to the cautions about driving etc. when first taking it. Still thinking the MRI's after the clinic will say NOT ALS! People are having more and more trouble understanding me at work, and I definitely am having some swallowing issues, possibly even laryngeal spasms with some stridor on occasion. Can't even fathom not being able to work as a nurse. So many of us are 57-58. As you can see, flight of ideas with a million questions, some of those I don't want answered. Crazy, but I have an autoimmune inflamatory myopathy called Dermatomyositis. It is also a rare disease. I have not let it slow me down much, but this MND may be a different story. I don't even know what else to say. The more I read here, the more fearful I become. Oh well, here I am.:confused: So sorry for all of you here.
 
>Go to first visit in ALS clinic on Tuesday

get a 2nd opinion from ALS specialist. This is a beginning, not an ending ...


Kind regards,


-----
Max - Sunday, October 19, 2014 10:27:16 PM
-----
onset 9/2010, diagnosed with ALS by Stanley Appel 8/29/2013
It Is What It Is ...

.
 
I regret to say this was my 3rd opinion. But I will go and I will be optimistic, as it is my nature to be so. Thank you
 
You are still in shock! Do get that second opinion for your own peace of mind. You'll find much support here- as well as humor and good advice from the REAL experts- those living it! Welcome to the forum no one wants to join!
 
>Welcome to the forum no one wants to join!

Ditto that!
 
Tawill, sorry to see you join our group. Don't become more fearful; become more well-informed so you can make the reminder of your life comfortable and possibly meaningful.
 
Tawill, our daughter was a hospice nurse, and she once said something that has stayed with me, especially since I see that so clearly with PALS on this forum. THERE IS A LOT OF LIVING IN DYING!
So keep living your new normal. Today is all any of us are guaranteed! Hugs to you. Donna
 
tawill i would welcome you but i don't think you need that right now. the thing i do think you need is to be here with ones that do understand on more what's going on. it ant all about the asking as it more on having some one too talk to.
 
Tawill, I'm glad you found the forum. It is so helpful and encouraging to know you are not alone. Please don't be fearful. Being informed is good but don't let yourself get bogged down with info. You need to protect yourself emotionally as well as physically.

Hope your doctor visit goes well on Tuesday.
 
oh tawill, I hate welcoming new members as we wish there would never be another one, but now you are here you have found a wonderful supportive family to get to know.

Please try not to read threads here just now that are about later stages, it will scare you, I remember scaring the crap out of myself after Chris was first diagnosed on this very forum!

Just remember that this is a big shock, you will experience many emotions including denial and you have to grieve. That's where it really helps having the support of us that have a true understanding of what you are going through.

keep talking, doesn't matter if it is scattered, it all made perfect sense to me!
 
for swallowing try Nuedexta-cant hurt and it helps some PALS.
 
>for swallowing try Nuedexta

yup, the va is going to try that for me 2
 
My husband was diagnosed in January. I found this forum very quickly, and it has been a lifesaver. There are times when it's overwhelming and I have to go away for awhile--I think that's probably not uncommon depending on the stage of this journey you are in. As Mike said, do get educated--and I've found no place better to do that than right here--and then take a break if you need to. Use the knowledge to be as prepared as we can ever be. In the meantime, welcome to the party no one wants to attend. We'll be here...
 
Tawill, I hope you had a "good" clinic visit today. Our first one was quite overwhelming. There was so much information and so many people came and went...I was drained. It was very helpful though for getting services we needed. Glad you found this resource. It has been a real support for me in some difficult moments.
 
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