Can't Remember?

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Whitsend

Distinguished member
Joined
Jan 8, 2008
Messages
105
Reason
PALS
Diagnosis
01/2009
Country
US
State
NC
City
Concord
I can still remember how it felt to walk and run, how it felt to feed and dress myself. I can't remember what it felt like to turn over in bed. Some combination of hip and shoulder?

What can't you remember how to do or what it felt like?
 
To laugh when I would fall up the steps or when I walked in the mall and could find every flaw in the flooring and tell my children, "Watch out for that spot" and later realized it was me not the floor.

To have a good cry and not have your children ask you if your in pain!

I can't remember what my life was like before all the tests and appointments!

Give me time, I could probably come up with a hundred or so!

Kimberly
 
To shave my legs or underarms. To wear jeans with a zipper and a button. To walk to the bathroom without somebody "buddy walking" you. To hug your kids goodnight and tuck them into their beds instead of them coming to you!

To have the life I had 2 years ago!



Kimberly
 
Good question Whitsend...I have no answer but I can say I know what you are saying.

I dont remember how to run or what it felt like either, although I tried, no, about a year ago in a store we have forgotten something while at check outstand, I said I'll run and get it, turned around and headed off to find myself on the ground face down, thinking, oh ya I cant do that anymore. Sometimes my mind forgets what my body cannot do anymore. So frustrating.
 
To cut my own meat; Aw He<<, to eat meat. To blow dry your hair. To be able toswallow pills without them getting stuck in your throat and dissolving there while your gagging.

But again, being able to do for your kids instead of them doing for you!

This has been a real wake up call and makes you realize what simple things people take for granted!

Thanks Whitsend, you can your tissues back now!

Kimberly
 
Today I handed my husband the digital camera to take a picture of our dog and I inside the back of the Honda Odyssey van we bought this month. When I looked at the picture it was sideways - this from a professional photographer. He hasn't taken a picture this year since he was diagnosed.

I've told him I took him for granted before, all the multitude of things that he did that I didn't appreciate at the time.

I treasure each day that we can spend together. (Most days!)
 
I can't feel pretty anymore. I remember feeling pretty but feel so clumsy and ungainly now. I remember how to walk and run because I regularly dream about walking and running with ease. I remember it all. I just miss it.
 
I can remember Oct 15th 2010,I had been working out at the Conway SC senior center 5 days a week and meeting new friends,I had just moved from NH.The cost was 14 dollars a year for membership.They had all kinds of equipment,great staff,beautiful building,I knew I loved the south.Lots of days I spent 1 hour on the treadmill,and did the weights,but fatiuge was moving in and I told my Neuro at Duke how tired I was getting,and he told me to back off.What I don't remember is what it was like to talk,to be social,to make friends,to say hello,have lunch with the seniors,oh well,I have studied ALS and learned through stories here and my own experience ALS SUCKS
 
My husband dreams about walking.
 
I don't remember what it is like to have spontaneous conversation. To order what ever I want on the menu. To sleep all night long without waking. To be MOM without ALS attached to it.
 
I remember the joy of singing along with radio and in church. My oldest son decried mebas always singing in a fourth grade essay about his family. He sings the national anthem at home UVM hockey games and with many groups in the area. I so happy he share the joy of singing.

I remember working in my rock garden and planting beautiful flowers. Now I see weeds taking over my gardens.
I remember golfing with friends then having lunch with them. Now I get most of my nutrition through my peg and can't walk across my yard without falling. But now I can go on walks with them on power chair.

I remember eating pizza and chicken wings. Now I get most of my nutrition from my peg. But I can still enjoy chocolate!
 
I remember hiking mountain trails.....even last year....now I can only walk a half a block.....but I am grateful for this too! I remember singing loudly with a good voice and loving it....I remember being able to talk without effort....now it is real work....but i am grateful that I can still be understood! I remember woofing down a big burger in no time without fear of choking...but i am grateful that I can still eat a burger though it takes me a really long time....but most of all I am grateful that I can love....I can give eye contact and reach out and touch someone...I can listen to others more, and give them my presence....nothing will take that away from me....for this I am grateful!
 
We are blessed with such good memories. Sometimes now days it's hard to remember that. But we are blessed. I've taken so much for granted in the past. I can see it so clearly now that our lives could have been and could be much much worse. We are blessed!
 
I remember the last time I sat in the ocean I could still walk good my sister-in-law and I sat at the water edge because my arm were nearly gone by then and without them you don't have a lot of control my husband had walked down the ocean but couldn't hear us yelling two guys on me beach saved my life that day when a wave came in and got me off balance. God must have known I was going to do something stupid.
 
Some mornings I wake up and remember what good dreams I had through the night about living a "normal" life. I find I even miss cleaning my house and cooking a meal for my family instead of others bringing meals to us. Wouldn't it be wonderful to cut grass and smell the fresh mown grass in the air. Or going grocery shopping and being able to pick up new products to just take a look instead of trying to make a list from memory for others to shop for us. I miss being able to meander around after church to visit with old friends and acquaintances. It would be wonderful to be able to volunteer again or to be able to care for our grandchildren by myself. Some of them have never known me being able to walk or hold them or open a treat for them. On the upside, though, the older granddaughters (10 and 11) have become quite comfortable helping me dress, eat, and get into the van. How beautiful is that!
 
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