Hi everyone

[Curetime]

Hi,
My name is Dustan Im from PA.I was diagnosed in 2/07 by Dr.Rothstien from John Hopkins.A little about me Im 35.I have two beautiful kids.I used to work at a state prison here in PA.I was the 9th guy to come down with ALS from there in twenty years.I am a vet.I love the outdoors and Texas Holdem.

I went on a hunt with Ted Nugent for those of you who know who he is.He going to speak about ALS.For those of you who dont know theD.O.D has a very large contract for ALS research.Dr.McCarthy should know about it I would think since its with ALSTDI.

ALS will not win we will
Dustan

 

[halfin]

Hi Dustan, welcome to the forum! I am sorry to hear about your DX, at age 35 you are very young to get this disease. One good thing is that younger people are more likely to have slow progression, so i hope you are one of the lucky ones. How strange that so many people at your work have gotten it.

That's interesting that you know Ted Nugent. You should tell him your ALS was misdiagnosed as Cat Scratch Fever! I'll bet he gets that a lot. Anyway that is good that he will speak on ALS, is that because of you or does he have another ALS connection?

 

[Curetime]

Hal
No it will be for the military.Vets who were in desert storm are coming down with ALS.Its my understanding that theDOD has a hundred million dollar contract with the ALSTDI.There not getting it all at once.But Im sure Ted will speak on behalf for all pals.

Dustan

 

[tdamess]

welcome curetime nice to meet you many helpfull people here ... just ask anything and you will see ..

 

[Curetime]

Sorry to hear that tdjames.Ihate ALS.

I Live by a saying

ALS will not win we will
dustan

 

[tdamess]

yes its an awful way to make friends wish it never had to be

 

[hopingforcure]

Welcome Dustin,
I am a fellow PA. girl, so many of us from PA. I often wonder why that is. Now you have so many at the Prison..Just does not make sense. My Husband and son, big hunters. See Ted Nugent on hunting shows all the time, he is also a fellow Conservative. I am a avid card player, I like Black Jack a little to much. Glad to have you hear, sorry though. I got sick at 39, I always told my husband that people get Corvettes for their 40th birthday, and yet I get ALS.. Go figure...

 

[Curetime]

Hopingforcure,
You go to Johnstown clinic?I had a great time with Ted.That man is very politcal smart.Ive been talking to Jamie Gold.He won the 2006 Main Event WSOP.His father passed from ALS.I might be going to the 2010 Main Event with him.A little more about me Idont beat around the bush.Thats the military and prison in me

My thoughts are the goverment can cure anything they want.Called population control.Pharma.Companies make big bucks.Heck doctors just keep giving these sick folks pills.They might work every pal knows RILUTEK is a joke.At over 2000 a month for that joke of a pill and it only gives a couple of months.Come on I wonder how many people know the goverment was trying a male birth control pill drug trial during Desert Storm for male soldiers.To much red tape here in the USA. I do a ton of research about the govt.And ALS which I bet all pals research ALS.

Well I could go on and on.
ALS will not win we will
Dustan

 

[JeffP]

dustan hang in there friend im 47 with bulbar als diagnosed 8/09 ,ilve one day at a time i have 5 grown children and 7 grandkids .like tim mcgraw sangs live like your dying we get the meaning straight from thee heart .my wife works for the v,a and has seen alot of vets from desert storm and so on diagnosed with als.i wish you the best your young stay in the best shape you can and enjoy every moment

 

[canfiet]

Dustan,

Great! Glad to hear "Uncle Ted" is In the Know! I think he's awesome! When the Motor City Madman talks....people can't help but listen! Love him! Wish I had a famous friend.

I tell my husband the same thing. Women at 40 get boyfriends and sports cars and I got ALS. But that's my life's story. I was so hoping 40's to be better than my 30's. I take it one day at a time now...

I'm excited to hear what Terrible Ted gets started! I thought about contacting Gene Simmons for my "Make a Wish" come true for me and get him on board. He has lots of friends, too.

 

[JUDIEMATUL]

Hi, my name is Judie Matulis. About a week ago, I really got breathless, had to stay on a bi-pap for at least 20hrs/day. Now, a week later, I have trouble getting a whole word out, and breathing is faster. Has anyone ever experienced this? and if so, what happened? I only have use of one arm and one leg. I am unable to talk, and was Dx 2009

Judie

 

[hopingforcure]

Hi Judi,
Maybe Joel will see your message, he always knows a lot about these kind of things. I am sorry you are going through this. You are another person who lives close to me, a lot of people from this neck of the woods..A lot of us...Just mind boggling..

 

[joelc]

Hi, my name is Judie Matulis. About a week ago, I really got breathless, had to stay on a bi-pap for at least 20hrs/day. Now, a week later, I have trouble getting a whole word out, and breathing is faster. Has anyone ever experienced this? and if so, what happened? I only have use of one arm and one leg. I am unable to talk, and was Dx 2009

Judie

Could it be allergies? If not it could be anxiety or the fact your diaphragm is getting weaker. If it is your diaphragm then have you given any thought to a trache and vent? It is a beautiful way to go. I highly recommend it.