I was told that i have ALS

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davbo49

Senior member
Joined
Sep 18, 2014
Messages
606
Reason
PALS
Diagnosis
04/2014
Country
US
State
kanas
City
kanas
I'm new to here. The Dr's put me through a lot before they told me that i have ALS. It all started when i lost the use of my hands then my arms. It feels like my lags are going now. I have a wife and two sons we lost are little girl when she was 9 years old. Now my boys are big and moving on and they told me this will take my life. Will im ready to see my little girl again. I had good times with my boys.

The thing is now i have no one i can talk to about this. My wife it has been hard for her and my sons don't want to talk about it ether. It starting for me to take this all alone
 
you will find friends and understanding here. I am so sorry you had to have this diagnosis. There are several diseases that mimic ALS with their symptoms including heavy metal poisoning and pareneoplastic syndrome. Make sure you have blood tests confirming that these are not present. Make sure your diagnosis is looked at by a neuro in an ALS clinic
 
So sorry to hear you are joining our club but welcome. This is a good place for support and information. We also have some laughs now and again. I know what a shock it is to be diagnosed. You can share here. We understand.

Lynne
 
You aren't alone anymore! Everyone here understands - and your wife might be more willing to talk about what you are going through if she knows other CALS share her pain. Come here for support and to talk about anything you want. Sorry you are joining us but welcome to an elite group we all wish we weren't part of! Donna
 
Thank you all it's good to know i have someone to take to through this. I'm in ks and ku has been doing all the work. Today i went to get the blood work done boy they took a lot this time. Me and my sons are in to RC Dirt Oval racing and this is at the last of the season just two more races. I would so much love to be able to just be there with them. My racing was gone at the beginning of the season for me. I knew last year i was starting to losing my hands. We are members of a race club that i have been in for a long time. It been real hard not to be able to be there with ones you knew for years. When i go i have to drive to get there now the driving ant working out to good and it's the same for the Dr's too. My boys have there own life's going on and they don't need me to take up all there time. But any way im going to drive to the track this weekend for the last time.
 
Welcome,
You are not alone, I have found friends here and answers to my questions. I live near Charlotte and nascar country!

Janie
 
Dav, I will echo you are not alone. and give the wife some time as there is some shock, denile and mourning she has to go through as it is all a little over whelming at first. She will figure out you don't have an expiration stamp on your foot and come around once she wraps her head around it all. Having lost your daughter I would think this is an extra punch to the gut for her.
Our sons don't like to talk about it either, I think it is a guy thing, 'if ya cant fix it whats to talk about' .... as long as they are there if you need them and do what they can, it's all good.

on a fun note, our eldest is big into the RC racing too. Have you seen the gaget that pushes the tire from the wheel rim so you can just run a quick bead of glue instead of tediously pulling the tire back with your finger to put in a tiny dot of glue as you work your way around the tire? My boy invented it, yup.
And let those boys know you would still like to get out there and watch every so often
 
My wife seems to be doing better with this i hope. Shes starting to talk to me about it.............. You know what this ant so bad going like this. It give me time setup and take care of thinks that needs to be done before i do go. I look at it this way i was just wanting to make it to my 70's like my mom and dad did. But the guy up there as plans for me.

My hands and arms are about gone it's getting hard for me to tape. My lags are starting to go now so yesterday i got out with the rc crawler guys and ran my rig up and down some good rocking hills. We did about 4 miles of it, the guys was awesome they was there to make sure i made it through it all right. I have been trying to work my lags much as i can. Today we are heading out to the track i haven't been there for the few races. The guys are anxious to see me there. Will no time got to go.
 
You two have been handed a huge challenge! I'm so glad you can come here for support, and that your wife is now talking with you and that your buddies are helping. I'm in awe at how my PALs friends are surrounding him with support and understanding! Hope you find more of the same.

Sherry
 
I am working on getting my wife on here. She is moving slow but at sometime she will make it here. Today was not good me, tried to make it to the track for my last of driving there. Well the truck broke down on me on the way there. It was a 20 mile walk for me tried to call but no one was there to help. Life just keeps getting better. What more is he going to put me through before he takes me.
 
Omg...are you doing okay? Do your best to rest tonight and the next few days. Eat well and often. Take care.
 
That i well do. I can hardly walk now after that my lags feel like there not that much lift in them. I could not find a place to set down on the way back so it really took it on my lags.
 
Got my truck home feeling good about that one. Don't know what to do with it. It's getting hard to drive anyway and my wife can't drive do to her heath. I use to do everything my self never ask anyone for help. My wife has to help me get ready and cook Now don't get me wrong we been together for 26 years. My wife can't cook , i did all the cooking till this hit me. I had something going on with me way before i see the Dr's. I was falling sometimes and thought i did some thing to my arms. But as time went on i seen my lags doing the something and that's when i went. They tell me im in it quit always. It took ku some time with all there testing and 4 different dr's to tell me. O well that's life and i had a hard one and it ant over yet.
 
Had another day hehe dr's wanted to see me today. No ride after the little walk i had. My lags was not ready for this walk and the bus line is away from us. I don't know how the dr's are going to like this.
 
Dav,
If you and your wife can't drive due to your health, and the bus line is far away, you are probably eligible for paratransit dial a ride services where a van will come to you. Check with your local transit agency (bus company).
 
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