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azwxman

Distinguished member
Joined
Jun 15, 2014
Messages
147
Reason
PALS
Diagnosis
06/2014
Country
US
State
az
City
tucson
Hi all,

Mark here. Diagnosed on June 2, and got a second opinion from a neuromuscular specialist at University Medical Center (U of A) on the 10th.

I'm 58 today, retired Air Force after 20 years of service and lucky me, spent nearly a year in Saudi Arabia during the first Gulf War (and have already begun to apply for disability at the VA).

I haven't received a diagnosis of the 'type' of onset I have. I have experienced fasciculations essentially over my entire body, cramps in my feet, calves, quads, hands, arms. I have pseudobulbar affect and take Neudexta for that...works great...I really didn't appreciate nearly breaking down in tears at work :(

My wife is definitely more broken up about the diagnosis than I am...she suspects maybe I'm in denial. She's probably right. Seems kind of unbelievable that after 58 years, great health, staying active, that I'm looking at the loss of my body in the not too distant future. Still, I'm keeping a good attitude as much as I can.
 
Welcome aboard.......I got diagnosed 6 months ago, and am still in denial. I try to keep busy and do things myself (exercise, yard work, house work, recreation).
The bulbar blues have been very difficult for me, I have been on Neudexta for 3 weeks, it has been real difficult for me to adjust to it. When I started taking it twice daily it was really hard, and I discoed it after two days (still taking one cap per day).
Please tell us how your symptoms started and more about your progression.
bigmark
 
>Mark here.

hi Mark, I'm Max. So sorry to see you here, but it's a good place to share information, make a great bunch of supportive people, and share your experiences – – good and bad.


>Diagnosed on June 2, and got a second opinion from a neuromuscular specialist at University Medical Center (U of A) on the 10th.

the whole thing sucks! I'm glad you took the time to get a second opinion because ALS is very hard to diagnose.


>I'm 58 today, retired Air Force after 20 years of service and lucky me, spent nearly a year in Saudi Arabia during the first Gulf War (and have already begun to apply for disability at the VA).

happy birthday :) – – I'm 62, diagnosed August 2, 2013, onset September 2010 – – so I'm in my fourth year. Left arm and hand mostly gone, swallowing and speech pretty bad, right arm getting weak but right hand still works, legs are still pretty strong, I can walk short distances but have a power wheelchair which will help a lot once I get a van to be able to use it :).

he is very important to get in contact with the PVA, the paralyzed veterans of America… They can really short-circuit your interface with the Veterans Administration. By the way thank you for your 20 years of the service. I was Navy 1970 – 1974. thank goodness for the VA! They have been great. Although remember they operate in a different time dimension than the rest of the universe. We call it VA time :).


>I haven't received a diagnosis of the 'type' of onset I have. I have experienced fasciculations essentially over my entire body, cramps in my feet, calves, quads, hands, arms. I have pseudobulbar affect and take Neudexta for that...works great...I really didn't appreciate nearly breaking down in tears at work

I am still working (as of firmware engineer at Hewlett-Packard in Houston); however, I must admit my job performance as taking a pretty big hit since I can't really talk or handle my big servers anymore. Hewlett-Packard has been fantastic for us. Right now I'm doing patent and intellectual property protection work for some cool new technology we're making. Since I can't really type any longer, I'm using Dragon naturally speaking, the speech to text software, to type this and my other technology work. Despite my bad the speech.


>My wife is definitely more broken up about the diagnosis than I am...she suspects maybe I'm in denial. She's probably right.

it was the same for me. And Sandy. The diagnosis takes us on a wild roller coaster ride emotionally. Get ready and hang on :).


>Seems kind of unbelievable that after 58 years, great health, staying active, that I'm looking at the loss of my body in the not too distant future. Still, I'm keeping a good attitude as much as I can.

as I said before it just plain sucks. Our motto is: iiwii = It Is What It Is.

You'll find a great deal of information on this forum and lots of people who understand and share what you're going through.

Kind regards,

Max

PS you can find out about my progression by looking at my blog entries on this site.
 
Ditto to what max said we are a great bunch of folks fighting ALS everyday. What you feel is normal if you didn't I would worry. I'm soon to be 55 and was diagnosed in Sept. Of 2012.

Patrick
 
Welcome Mark, sounds like you have a lot done already in regards to the VA, and I can tell you have been reading on this forum for awhile. My husband was in the airforce as well, although not a career airman. He is 54 and was diagnosed 2 years ago, with onset of symptoms only 6 months before. His progression has been rapid, although he has no bulbar involvement so far. He is able to eat regular food, and speak clearly and sing the most amazing harmony at church. BUT he is almost a total quadriplegic now and has 24/7 respiratory support in the way of non-invasive ventilation. He lost the ability to control his pwc 2 months ago and is at mercy of my driving his rig. He has maintained an amazing attitude which has endeared him to so many people in the community. Anyway I too want to tell you that you have come to a great forum with crazy, smart a**, intelligent and amazing people.
Unfortunately there is another Mark on the forum who goes by Big Mark, because he wears large granny panties, and there is a campaign to pick on him, so if you see disparaging remarks to MARK it may not be you. But then again give us some time and we might dig up some dirt on you. Please don't pick on Max because he is very sensitive and he might stop posting his dog pictures. I could go on and on but the forum site is acting up and I might lose it all. Have been copy incase what I have written is dumped and then I can paste it in again.

Crazy Canuck
Paulette
 
>Unfortunately there is another Mark on the forum who goes by Big Mark, because he wears large granny panties, and there is a campaign to pick on him, so if you see disparaging remarks to MARK it may not be you.

you know Paulette, we will probably start having to refer to Mark as "Big Mark" to protect our new Mark from harassment :).


>But then again give us some time and we might dig up some dirt on you. Please don't pick on Max because he is very sensitive and he might stop posting his dog pictures.

:)


>I could go on and on but the forum site is acting up and I might lose it all. Have been copy incase what I have written is dumped and then I can paste it in again.

yes I forgot to mention Mark that the forum has been having some issues… If you see a subforum start to automatically reload itself over and over and over again, pound on the escape key until it quits and then hit F5 or reload. This is a new problem and will hopefully be gone will soon now.
 

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When a thread visually acts up by loading and reloading the logos--thus making the newer posts practically invisible--I hit the "stop loading" X on the address bar.
 
Paulette, too funny. Sorry for the caps--am having trouble figuring out my new computer andwindows 8. When i hit the cap lock button--it changes pages...


Maybe we can call the new guy little mark. And maybe big mark can post a pic of his granny panties.

Seriously, mark, welcome. Your wife can find support here too. Lots of cals and we truly understand what she is going thru.

WELL DAMN--WHEN I POSTED IT CONVERTED....

IS THIS ME OR THE DAMN FORUM...
 
I think maybe it is Max screwing with us, he is the one with computer smarts. Hmmmmmmm?
 
Hi Mark,
So sorry you have need to be here. I'm in tucson as well and have been happy with the care from the als clinic at university med center.
It all sucks but I've found a way to find some joy within these new boundaries.
Kay
 
Welcome Little Mark. You've come to the right place for support and caring. We are a crazy bunch here - but will always be here for you. Have your wife join us CALS, we know exactly how she feels.

Debbie
 
>I think maybe it is Max screwing with us, he is the one with computer smarts. Hmmmmmmm?

no way! not for our forum!
 
Welcome little Mark (yup sorry that's just gunna stick now, unless you can prove you are bigger than big Mark and that seems unlikely)

So sorry you have to join us, but seriously this is the best place to be, we are very elite group here, only the very best (no matter what anyone says about anyone else we know we are the best)

We can offer you support, understanding, laughs and tears. We've all either been there, are getting there or being dragged there, and we are doing it together.

I would never have made it through til my Chris was set free in April without my family here.
 
Sorry to welcome you to this forum "little Mark", but welcome! This is the go-to place for help, compassion, sharing, anger, whatever floats your boat. Yup, consider us family.
 
>Yup, consider us family.

:) absolutely!

overall we have had 7 kids, 14 Irish, 3 non-Irish, and 7 cats (plus the fish, guinea pigs, ferrets, etc. :))
 

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