Status
Not open for further replies.

JamieL

Active member
Joined
Feb 19, 2013
Messages
51
Reason
Loved one DX
Diagnosis
02/2013
Country
US
State
Texas
City
Dallas
I'm not sure where to put certain things. But I've been on a here for going on a month now, about my mom. Y'all have been so helpful and supportive. So I just wanted to provide an update for those who have followed me so far. No need to respond, y'all. Really! Some of this is just getting this out to an audience who knows the struggles.

First of all, I got my dad to FINALLY call the ALS clinic. He called on Friday (3/8) and the next clinic isn't until 4/5. So far (knock on wood), I think I'm in love with them. ;-) They had my dad send over (had to fax from their neighbor's house) all of Mom's results from her "diagnosis appointment" as I call it, at the other neurologist office. This is case in point of why I AM GOING from now on. Dad said the nurse called him a few hours later and said that, and I quote "Dr. Heitzman reviewed her results and said he isn't sure about this. He wants to see her on 4/2 and then see about her going to clinic on 4/5." Ok, so he's not sure about WHAT? Of course my dad doesn't know and didn't ask. <sigh> BUT, glass half full, right? He called, they're taking care of them, the nurse even asked my dad what HE needed and what support he could use, etc. I am taking them on 4/2 and attending the appointment.

I went to visit this weekend. As always, my mom's weight and speech threw me for a loop. After being around her for a bit, it seems "normal," but being away and then seeing her again drives home how frail she is. I was glad to get to observe her on my own.

I read notme's sticky on weakness vs. fatigue. Mom said she felt strong, but that apparently the doctor didn't agree when he did her physical exam. Perhaps this is what Dr. Heitzman is "not sure" about. For instance, my dad said he was glad we were there to help her fix her hair because he isn't doing it to her standard. Ha! Anyway, I asked her if she CAN'T lift her arms or if she just gets tired. She said she can physically lift them, but she tires too quickly to finish. Another for instance is that I couldn't get her dishwasher to turn on. And boy she opened the door, slammed it shut, really mashed on those buttons, etc. We talked about strength and how she might need a wheelchair at some point, but may be able to transfer herself to the toilet, chair etc. So she proceeds to use her arms to lift herself up on the kitchen cabinet. Then asked me to arm wrestle. So clearly she's in good spirits, and to me, not showing muscle atrophy. She's just THIN! If you'll indulge another example, my daughter was on one of those kiddie push toys and pushed herself across the floor. My heart stopped as she approached my mom because I thought she would knock her over. But my mom kinda spun around and side stepped her. Reflexes and agility seem fine. She's just SLOW, thin, has no energy.

What I did notice as drastically WRONG is her speech. She did eat, but very little and took tiny bites and put her head down to swallow. Her salavia is very thick and choking her up a lot. Especially at night. She said her breathing seems fine to her and she does not wake up in the night.

I know, I know, this all needs to be discussed with the doctor. And I will! But just wanted to share with those who know the path. I did get them to watch the ABCs of ALS videos. As I've said, they are the only people on the planet with no internet, don't own a computer, and never had an email address. So they watched it on my iPhone. But watch they did. I asked if they felt better or worse about it, and both said better. So there's that.

Thanks for listening and being my sounding board. I do appreciate you all.

Jamie
 
I really really hope he wasn't sure about was ALS> There may be another cause of her issues.

It's a good sign that she seems to have fatigue in the muscles verses weakness. I hope.

If there are issues with weight, please encourage her to use things like Ensure and to ask about a PEG (If she chooses to go that route) to maintain weight. She can eat with one.

There are meds to help with secretions as well--either too thick mucous/phlegm and meds to lessen saliva. Choking is always a hazard when there is any swallowing problem. It can lead to a type of pneumonia called aspiration pneumonia--which is very hard to treat--so choking is to be avoided! Keeping her head down will help at least on the short-term while she eats.

It's good you're going with them and that the clinic seems to be caring--many don't seem to have that. Please keep us posted! We're here for all of you!

If communication becomes an issue--an ipad or a cheaper tablet will help a lot--bigger keys than an iphone.
 
Last edited:
Double psot, sorry
 
Good news that Clinic will evaluate her so soon!
 
At least she will be in good hands with the experts at the Clinic.
Those people are very helpful.


NH
 
Status
Not open for further replies.
Back
Top