14 days to diagnose

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couponguy

Member
Joined
Mar 12, 2014
Messages
29
Reason
PALS
Diagnosis
03/2014
Country
US
State
mi
City
warren
i have officially become a member about 10 hours ago. i kinda knew but hoped i was wrong. teen kids and wife not taking it to well. i already am looking at things a bit differently. amazing what the realization of your life ending does to your outlook. i was still thinkin my life was only half over. appreciating every moment is all i can think of right now. even hugs have a different meaning. this sucks. sounds a little bi-polar huh? this might just take me a few to get a grasp on this whole thing. my kids are being robbed. my wife is being robbed. i'm being robbed. what the heck!
 
Yes it does suck. Sorry. It will get easier, and harder, so go ahead and be bi-polar. Enjoy the heightened hugs, and the I love you's .

Paulette
 
thanks paulette, oh, and in case anyone is intrested, my first doc appt. was 3/10, 14 days later i have diagnosis in hand. my hospital is the gretest, has people from the als assoc. right there in the neuro clinic, and everyone there treated me like i was the only patient.
 
I'm sorry. Really am. I just had the "talk" with all the family on Saturday and what good came out of it was that everyone is now free to talk about it, make the gallows humor joke, and be more comfortable with the subject. It is a good thing and it will help your family cope better with things.
 
Oh Boy that really does suck, I remember when I was diagnosed worst day of my life. Believe me when I say that feeling does pass. Life goes on. I adhere to the philosophy that I have ALS but it does not have me. I am trying to live as I did before but, differently. Each day becomes much more meaningful. Hugs are really good as is humor I think that I smile a lot more now than I did before. Family means a great deal more now too. Hang in there and thing positive thoughts when you are able. :)

Rick
 
thanks ya'll, off to social security,WooHoo, expecting a hard time but we'll see soon enough---------------oh-my name is shawn in case i forgot that.
 
Shawn, your Social Security and Medicare should take effect immediately under the "Compassionate Allowance" program. Not all SS employees know that.

While you're at it, think of increasing your life insurance if you can.
 
Hi Shawn,
I've been quietly following your posts and really hoping you didn't get stuck with this outcome. It just sickens me each time another person joins. The first few weeks were the absolute worst, and I did call my doctor after three totally sleepless nights to get something prescribed to help...and it did (now I don't need it).

Some thoughts as I reflect on the past 3 months:
The constant twitching: This drove me completely crazy in the beginning and I didn't think it would be possible to learn to live with them. They are still going strong, but I don't notice them as much.

Social Security: I applied online and things went very smoothly. Filling out the form was very emotional, but I'm glad to get that over with early. Medicare and benefits start for me 5 months after the official diagnosis.

Feeling robbed: This is the toughest. Life for me was going so well...great family, friends, active fun lifestyle. In fact everything has changed, which requires such an adjustment. After the initial shock passed I became determined to make the very most of every moment I had. So now I get up and find something to be grateful for, and end each day the same way. I can still go for 1 mile walks, swim daily, enjoy all the hugs and precious time with those I love. Since I don't know how long that will be possible, I choose not to waste time sitting around depressed or angry. Dwelling on what I am no longer able to do was not at all productive.

The others on this forum are extremely helpful and answer any question or concern, so take advantage of that. At least it helps a little to know that there are others out there who know exactly how you are feeling.

Best to you and your family,
Kay
 
Hi, Shawn --

>i have officially become a member about 10 hours ago ... teen kids and wife not taking it to well.

I have been following your posts, also, and am sorry you passed the screen.


>i already am looking at things a bit differently. amazing what the realization of your life ending does to your outlook

Not to be overly optimistic, but until you get a read on your own progression you cannot count on *anything* including being around to pay taxes and tuition! Everyone is different, some fast, some slow. I start a drug trial tomorrow (fingolimod) wi=hich has a 50% recurrence in MS -- who knows. My luck I will get the placebo :).

>i was still thinkin my life was only half over. appreciating every moment is all i can think of right now. even hugs have a different meaning.

Our motto around here is: "It is what it is."

>this sucks. sounds a little bi-polar huh? this might just take me a few to get a grasp on this whole thing. my kids are being robbed. my wife is being robbed. i'm being robbed

Well we have to play the cards we are dealt, but I am going to try to cheat if I can!

Seriously, I went nuts the first few months (still am some, but that is another story!). I would encourage you to dig around here some, share what is going on with you, let us learn from your experiences -- as far as I am concerned they more important to me than my own.

And, if you like dogs, go to my Facebook page and bore your kids with my dog shots :).


Kind regards,

Max
 
>And, if you like dogs, go to my Facebook page and bore your kids with my dog shots .

at [email protected] ...
 
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