I have so many questions...

Hello,

I'm new here, and when I say new I mean real new! Like, I just made this account 5 minutes ago. I didn't know where else to turn and I needed someone that I could talk to. So here I am.

My grandmother was diagnosed with ALS about a month ago. It took us all by complete shock as i'm sure it did for most. She was diagnosed at the Cleveland Clinic by the results of an expanded EMG. I guess the reason i'm here is because the decline that i've seen in my grandmother is astonishing. She presented with foot drop and flat affect. She just didn't act like herself at all. They didn't know what was wrong with her so they sent her to the Cleveland Clinic where she got the diagnosis. They told her she needed to meet with an ALS specialist, but can't get her in until February.

My main concern is the rapid progression that has taken place. She didnt even begin to show any kinds of symptoms until June of this year. She was diagnosed in November. Now her foot drop has gotten so bad she falls multiple times a day. She chokes just about everytime she drinks anything, struggles to get her breath. But probably the worst is the cognitive issues. I see glimpses of my grandmother, the way she was. But that is all. You can tell she really tries, and then gets very aggravated when she's unsuccesful. She struggles to find words, has problems holding conversations because she loses her train of thought. I'm pretty sure half the time i'm with her she thinks that i'm my mother because she calls me by a nickname of my mothers. She has some serious cog fog and I didn't think ALS was supposed to affect the patient in this way.

I guess the thing i'm really concerned about is the fast progression. I've read through a lot of the topics here and the people seem so put together, they seem so well thought out. My grandmother is not like that. Maybe it's just stress from her recent diagnosis, I don't really know. I just had to ask someone, and I didn't really have anyone else to turn to. Any help you all could offer, I would appreciate it more than you would ever know. I just want to do everything possible to be with my grandmother and help her any way that I can. I really don't want her to see how scared I am, how nervous I am about all of this, that wont help her, and I know she has to be feeling the same things and really don't want to make it worse for her.

Thanks again, I really appreciate anything you all have to say.
Laura

lcalex2, you didn't say how old your grandmother is, but believe me, I was a total wreck and trying to hide it from my kids when I first found out. Everyone goes through stages, it's very overwhelming. But over a period of time, I was able to resolve my emotions a bit better, not that I have them under control all the time; sometimes I can talk to people about it, other times I completely lose it.

That said, you need to call the doc and get a prescription for some AFO's for your grandmother's foot drop. Falling can kill, not matter what her age is... is she using a cane or a walker at all? Call your local ALSA or MDA Chapter and ask them for help... they have equipment to borrow, social workers, etc. Talk to the doc about emotional liability and anti depressants as well. If she's computer literate, get her online to find out she's not alone in all this.

There is life after the diagnosis, but no one can tell you how fast the progression may be. I've been lucky in that it's been relatively slow for me.... and find out about clinical trials that she may be interested in.

Good luck and keep the faith.

Helen

ALS can and DOES affect cognitition. Some folks are given a dual diagnosed of ALS/FTD. See if there is another ALS clinic that can see her quicker or call the one youre going to and see if there is any way to move that appt up.
There are meds she can take to help with the FTD... not fixing it, but helping to keep her more relaxed.
If she is choking on thin liquids, try getting some Thick-it. Its a powder that can be added to liquids to thicken it.
See if you can get her to use a walker so she doesnt fall as much.
good luck

Cognitive issues are much more prevelant in ALS than once thought. As both folks stated below it could be emotional over load from the new diagnosis or she could have some real cognitive issues going on. I can only speak of my mother's experience with ALS/FTD. She started having a hard time putting sentences together, getting lost in conversations, loss of interest in things that she used to love and becoming extremly obsessed with certain things. I would also recommend trying to get into the clinic sooner or trying to get an appointment at another clinic. Express your concern with the cognitive issues she is experiencing. They will be able to asses these changes through a series of tests to better determine what is going on. Trust me, if she is experiencing cognitive changes with the ALS, it is much better to know they are being caused by a medical condition. Hang in there and god bless.

I was also shocked to learn of the cognitive issues. My husband is given a simple test to say as may words as he can that start with an F in a minute. He has a very difficult time!
Now that I have learned this I believe it may have been his very first symptom! He started to tell me he couldn't think of words. For a long time I thought we were just having male/female communication problems. He would have trouble expressing himself. I'm very verbal and a special ed. teacher so I'm used to explaining things, finding the words... and then too, I thought it was because he was a guy! Ha! I feel awful because I would get so frustrated with him. Then, I started to think it was because he came here from Hungary when he was only 5/6 years old and it must have been so difficult because he spoke German and Hungarian, but no English!
Now, I see the bigger picture!
I time myself for a minute and can think of so many words that begin with f. I'm shocked even now that he able to only come up with maybe five!

Kiss... when Glen was being assessed at the clinic, he could only come up with 3 animals in a minute, and 3 D words in a minute...and he used Dog and Dinosaur for both! For a long time my son and sister and I would do the same thing... pick a letter and time ourselves... easily coming up with 20 - 30 at a time. And of course, the silence and loss of interest listen to a frequent misdiagnosis of depression.

lcalex.. there is another subforum called ALS/FTD... you might want to take a look through it, there is a lot of good information and some good reference suggestions.