Have recently been diagnoised with ALS

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Farmgal from ND

Active member
Joined
Apr 21, 2008
Messages
30
Reason
PALS
Diagnosis
06/2005
Country
US
State
North Dakota
City
Turtle Lake
and really need someone to talk to .
 
We're here.

Sorry about you're diagnosed. It's overwhelming at first. Tell more of your circumstances if you like.

Are you linked to an ALS Center or the MDA?
 
Hi Liz

I was going along with the PLS/ALS diagnose pretty good until 2006 and then I fell and broke my jaw, that set me back quite a bit. Now I am using a walker and I guess I just came to except it, but now I got the ALS diagnose and now I would like to find out exactly what I am up against so to speack. I always had the motto for warned is for armed.
 
Know how you feel

My husband was diagnosed in March. I know how you feel. It's devastating. There are so many emotions to work through. Do you have support? Loved one, family or friends? We were sort of just thrown out there with out any real professional help. We could have really used a social worker or someone familiar with all we would be facing. But we didn't get it and yet we somehow managed to come out the other side.

Write when you are ready, there are a lot of people here wanting to listen.

Julie
 
The emotions are hard

I have always been a very up person and now I will wake up depressed and really have to struggle with it all day. Yes, I have alot of friends and family there for me for support, but there smuthering me and I dont mean that in a hard way, its just that Im going through so many changes and they want to know everything and somethings I cant explain, I dont know if I am making sence or not. My husband is also in denial about my disease, hes there for me but I guess we all need to find out what is coming down the road, how bad is it going to get. I hope I dont sound like Im the only one who is going through this, I was so happy to have found you guys so I can talk and maybe get a little off my chest with out any one around.
 
We're here.

Sorry about you're diagnosed. It's overwhelming at first. Tell more of your circumstances if you like.

Are you linked to an ALS Center or the MDA?

I dont know of any ALS Centers near where I live, and in fact I am the first person to ever get this in the town where I live close by. My Dr. is a 4 hour drive for me for appointments. I will be going through a MDA clinic to get a work up on June 16th, so I guess that will be a start. We live on a farm / ranch in central ND, right now our 4 wheeler is my legs to get to where I need to, thank goodness for modern tecnology ! I still try to help and do as much around the house as I can but as you know it can really tire you out fast. I first noticed a change in my breathing and I tire out so much faster. Is that what normally happens ? My Dr. wants me to go on Rilutek, but from the information I have been reading Im wondering if its a help or not. What do you think ?
 
wanda

and really need someone to talk to .

sorry for your diagnosis,i am going through the same thing,needing to get a dr for a second opinion,it is very hard to find a dr that deals with this where i live.my email address is [email protected] if you would like to write me and i will write back.my name is wanda...
 
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