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lostin

Active member
Joined
Jun 21, 2011
Messages
63
Reason
PALS
Diagnosis
09/2010
Country
th
State
phuket
City
patong

19Sep..made it to 55 yesterday

went out for a couple of hours to my friends' bar but i felt awful being looked at by everyone pushed in the wheelchair all bent and shrivelled
that will be the last time
i know it will be my last birthday too
my breathing is so weak i couldn't even blow out a candle
can't move my tongue much now either
i salivated on the way home and continued for 3 or 4 hours on the bed choking too so not much sleep for me or for jeab
go mission hospital again tomorrow 1.30 for yet another feeding tube follow up

MY life story and diary This_is_MY_life • View topic - This is MY life
 
I am so sorry that you had a bad night, i am glad you got out and celebrated your Birthday though. None of us know when it is our time, you could be here for years:)
 
Rex,

Happy Birthday! I just turned 55 a couple months ago, too. Try to enjoy what you have and not think about what you don't have. Don't worry about being stared at...they are just curious.

Take care,
-Tom
 
I have met and been helped by many people that notice my infirmaties and look. I've been so surprised and have found that people are very kind. Try not to see a mental picture of yourself as a sad and shrivled lostin. You're still you as much as you ever have been. Try to enjoy life as much as you can. I know this ALS deal we've gotten truly stinks but hey, it's what we have to deal with now! Lets make the best of it!
 
Lostin, Happy Birthday..You are still the same man you were before this disease. It is awful but we can live everyday to the fullest if we choose. Is it hard? You bet!...But we are the same people we were before, look a little differnt, talk different, things change all the time. Acceptence and contentment I think is key to living with it. Do what you can do, look for all the little joys to bring a smile. You just may well have a longtime here, no one knows. One day at a time, moment by moment.i I am so sory for what you are going through right now. (( Big Hug))
 
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Lostin I really feel for you...especially the choking part...scares the poop out of me! There is medication that will help stop the avalanche of saliva, which greatly cuts back on the choking. Do you have a suctioning machine yet...probably should get one. Hope you have insurance or medicare to pay for it. I think Tom has the right idea...about staying in the moment and looking for things you can still be grateful for. The ONLy thing we can have any control over is our attitude. I started a thread on the "Other" category called Happiness NOw...folks post whatever little thing gave them joy or a moment of happiness...sure, you have to really look for these hidden treasures, and stay focused on the Now. Love you, wished I could swoop down and take this ugly disease away from you, and give you hope. You are in my prayers. Courage!
 
I read your blog the other day while wallowing in a funk about my possible diagnosis. I face my 59th BD next week. Don't know what to tell my friends who know.

From what I've read you have a helluva interesting life.

I'm learning from people here a day at a time. Wish I could be more profound.

Rita
 
You are profound Rita! Just quietly so. ;)
 
Sorry you didn't have a happier birthday. I know you have been going through hell the past few months.

At least you were able to get out with friends.

If you lived in Swaziland, where the average life expectancy is less than 40, you'd be one of oldest guys around.

At 44, I am very envious of your 55 years. If someone told me that I would survive to 55, I would feel like the luckiest guy around and as though I had just won the world's best lottery.

I am sure none of this is helping. And I guess it's never enough time.

Anyway - happy birthday.
 
Next year you will be 56 born in 56 - you just can't miss that one! I won't!
 
Rex I'm glad you are still here. Hugs and love,
Laurel
 
Rex: I can't add much to what already has been said. The birthday is a tough one emotionally, you are supposed to be happy but there is no way to find any happiness with the situation that you are in. I hope that you can find some peace soon. I will be 53 in a couple of months and I will try hard to have a good time. I can hardly walk now but still have good upperbody function so I think that I will do all that I can on that day as I know that it will be my last good birthday.

Thanks for your blog.......it was one of the first things that I found on this site. I have learned much from reading your story.

I wish you well.

Bill
 
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