It's not all ALS

kiwisally · 01-31-2012, 06:21 PM

Maybe I'm just in denial, maybe I need to read less on other threads, maybe I just don't get it or maybe I just need to know I'm not the only one. I didn't want to hijack anyone's thread or piss anyone off but I just want to say, as someone sitting in this position, it's not always ALS. I used to get mad before ALS. I used to get frustrated before ALS. I used to cry and laugh before ALS. I used to forget things before ALS. I dropped thing, tripped, got too hot, too cold all before ALS. If I'm honest, on occasion I used to be manipulative, selfish, lazy and occasional very self centred and once in a awhile a right royal pain in the arse, all before ALS. I am not trying to say ALS can't contribute or even cause any and all of these things, and I know sometimes it very much does but I am saying that people were people before ALS with all their feeling, problems and issues good and bad. I'm just saying that they are still that same person and all behaviour, feelings and manifestations after a ALS diagnosis are not always a result of ALS. We are still who we were before ALS, for better or in some cases for worse.

Ms. Pie · 01-31-2012, 06:29 PM

I for one, was and still am, perfect.......chya right! You are 100% right hon. We are who we always were. I think I have a better understanding of life and such now though. Since my diagnosis my priorities have shifted. Petty things just aren't so important anymore.

hjlindley · 02-01-2012, 06:09 AM

Rigjt on! But this disease gives you a perpsective nothing else can. Drop the small stuff and focus on the good. It is still there, just hides sometimes.

CGAR · 02-01-2012, 07:59 AM

True kiwi.
I used to go outside on a nice day and say "Damn, what a nice day"
Now, I say "Damn, what a nice day, s*it, I've got ALS."

I used to care what people thought of me, brand name this or that, now, I'll even wear crocs and socks if I want!

Personalities are the same sure, but it's like the safety valve has been shut off, is it just me, or once diagnosed, do others wear their heart on their sleeves a little more.

Oh, and Ms. Pie, glad to see I'm not the only one that's still perfect

That's it! only perfect people get ALS, I solved the puzzle.

Love you guys,

Cheers,
Casey

beckysuenc · 02-01-2012, 09:33 AM

Thanks Casey,
Before my diagnosis I wa often accused of thinking I was perfect. Now I know I am. Like you said, only perfect people get ALS.
Beckysuenc

LizT · 02-01-2012, 09:34 AM

Casey youve got an amazing attitude. Love it.
And Kiwi- i think you are absolutely right. Sometimes ppl were a**holes before they got sick... and vice versa

jb63 · 02-01-2012, 09:56 AM

Hypochondriac before and after.....Got very upset last night because I was knocking over soda cans, med bottles, clock off my nighttable. Very clumsy, things falling on the floor, and me very concerned about losing the use of my upper extremities. VERY concerned, until my honey reminded me that I changed the night table I used for 30 yrs to make room for wheel chair access. The nightstand is about half the size I was used to, could move things around without opening my eyes. He had a cure for my anxiety..turn on the light.

My apologies to anyone with Hanson's Disease as I am going to use old terminology. MND and me...I feel like a leper waiting for another piece of me to fall off.

kiwisally · 02-01-2012, 10:13 AM

Casey, not sure if it's ALS specific or I'm going to die a lot sooner than I thought specific. Same goes for the priority and perceptive shift.

ladyrider · 02-01-2012, 10:27 AM

God is the same yesterday, today and forever, yes however, we are not, if you do nothing else, you are older by one day. Today holds new wisdom, new understanding, greater growth, if you will only go after it.

I read this this morning in the Christians here for support Forum. This is so very true for every one not just for people who have ALS.

TedH5 · 02-01-2012, 10:34 AM

You know what they say, "adversity does not build character, it reveals it!"

Al · 02-01-2012, 12:39 PM

A long time ago I was called an a**hole a few times. Then I had 2 hemhorroid operations and now can be called a perfect a**hole. See anybody can be perfect. Before ALS or after.

AL

odiva · 02-01-2012, 02:43 PM

Wow, everything I thought defined me, were the first things to go. My voice my hands. Now I need to redefine me. It's not easy. People used to love me. Now I'm a pariah. When I'm in the wheelchair and folks hear me speak, they smile at me like I'm simple. So, who am I now? I know God has a plan for me. I need to sit quietly and listen for His voice.

jb63 · 02-01-2012, 02:58 PM

Most of my friends and all of my relatives "disappeared" when I made my diagnosed known. I believe that they are just at a loss for words...but not even a call from my brothers and sisters. Good friends do not call often even tho I do not monopolize my call on my condition. This will change and the flock will return, but it will be a roller coaster. I do not like to be treated with kid gloves, but I expect some coddling to occur.

Going in in a chair in not convenient and people react differently. You are not a pariah, you must not put yourself down because you are being worked up for ALS. YOU ARE NOT YOUR CIRCUMSTANCES.

kiwisally · 02-01-2012, 03:12 PM

I found my true friends and my close relative come to the fore, quickly, without reservation nor qualm, they needed no instruction nor professed intentions they simply and quietly displayed remarkable insight, care, support and understanding. Some were expected, some came like a bolt out of the blue and those that can not cope (quite a few) I have nether the time nor the inclination to mourn.

Susan10 · 02-01-2012, 06:12 PM

jb63 - the knocking things over and dropping thins is exasperting - i finally said it's my exercise, bending over to pick things up.