New and introducing myself

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kelede

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Hi. I'm Kristina. I've lurked here a few times and finally decided to join. I found out in August that my Mom has been diagnosed with MND. It's been difficult for me because I live 1300 miles away. It's also difficult because I have two small children and I want them to know my Mom like I did and I know that's not going to happen.
 
Kelede,
Welcome, Sorry for the reason you are here, but you have found a great places to find answers to so many questions. Hang in there.

God Bless
Ellisa
 
Hi Kristina. Sorry about your mom but a diagnosis of MND is not an immediate death sentence. You say MND so I assume you are not North American or that she has a variant of ALS. There are people on this forum that have had ALS for more than 15 years. Stephen Hawking is a prime example of someone living with it for years. The statistics aren't great for the average person but your mom could be one of the not so average ones. Don't give up hope yet.
AL.
 
Hi Kelede, sorry to hear about your Mom. It must be hard where she is so far away. Do you and the children get a chance to see her once and awhile?
 
Thanks for the warm welcome. I said MND because it's a non-specific MND that I'm guessing is a variant of ALS. I've asked if it's a specific type of MND and she said no. So, that's why I'm guessing that it's a variant of ALS. She said that it would function like ALS but would take longer to set in. I do know that she's had it for a while though. The doctor's just took forever finding out what it was.

As for seeing my folks, I visit as often as I can. We were up there for Christmas. We're going up for Easter. We'll be going up this summer and they are coming down here for Christmas.
 
I see you're in one of my favorite cities! When you say your folks are up there I take it that means someplace north of the Mason-Dixon line. I asked because it touched me when you said you wanted your kids to remember your Mom as you knew her. I think there is a good chance that can still happen. Most ALS patients maintain their clear thinking and thus their personalities. Hope this helps a little...Cindy
 
Yea. My folks live outside of Albany, NY. That's where I grew up.
 
We live in the northeast but the grandchildren are in Denver. My grandson asks me frequently when I am going to come and see him, and I promised a trip for his birthday in March, which I wouldn't miss for the world but these plane trips really knock me out. I wish I could just snap my fingers and be there. There's a lot to think about and worry about if you let yourself. Better to take it one day at a time, I guess. At least that's what I tell myself.
 
My folks are in Ireland right now. They are trying to travel as much as they can. They were going to put the trip off, but once they found out what Mom had, they wanted to be able to travel and do things before she progressed to the point where she couldn't. I do know, that she gets tired really easily, so when I do go to my folks, I do all the chores for her so she can rest, relax, and spend time with my boys.
 
That is the greatest gift you could give her! Good for you for understanding what she probably really wants more than anything else in the world! What a great daughter you are. I bet your Mom and Dad appreciate the insight.
 
Well, the first thing I did was research as much as I could when I found out what she had. I like to know for myself, so I know what to expect or at least a rough idea of what to expect. I know she can't lift my oldest son and he's only 40lbs. I just try to do what I can for her.
 
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