Status
Not open for further replies.

slopokahontas

Distinguished member
Joined
Sep 5, 2014
Messages
116
Reason
PALS
Diagnosis
08/2014
Country
US
State
Az
City
Tucson
I think I might be losing my mind! Twice now while driving, I got confused about reverse and drive! I put my car in reverse, thinking it was Drive. Needless to say, I'm too afraid to drive! I also sat out two paid off pants for my son to get dressed. It took a while to figure out I was wrong. My friends say it's stress, but, is this part of ALS? Am I going to lose my mind? Ugh!
 
Doesn't sound like any ALS problem I've ever heard of.
 
Sorry to hear you are having problems.
It is a well documented fact that we often loose our ability to concentrate, making routine tasks seem new to us.
You are too young (I think) to call it a "senior moment".
Here are a few things I have been experiencing lately: spelling issues, have to read things two or more times to comprehend. Some times doing a routine task may seem like I have never done it before, or finding a place across town that I have been to many times.
I think they call it a "difficulty with executive decision making".
Actually, I don't even like talking about progression much because it is kind of scary, and I might start believing it.
I hope you can hang in there Slop, because you face many hardships that a lot of us take for granted.
Much Luv..........................
 
So, this could be an ALS thing? Holy crap! This is horrible! I thought I would at least have my mind! I'm so embarrassed I haven't told anyone! My kids thought it was funny when I exclaimed... Drive turned into reverse! My son had to laugh and tell me I was in reverse!
 
I am so sorry, that does sound scary. How have you been sleeping, because lack of sleep can really screw a person up. Please talk to your doctor and there are some tests that they can do, and there are medications for that although I am not sure what they are. Tim was tested by a neurophycologist or something like that, and they did a battery of tests on his cognitive, and problem solving etc. He was also tested at the VA in Seattle, and the most disturbing thing for me is that I know that I was having a lot of problems answering the questions. He blew it out of the water. You will be in my prayers.

Paulette
 
i think it's more things on you mind then anything. this is a lot to take in.
 
This is a really hard reply to write.

There could be a few things happening, and it could be a mixture of them, or something else I haven't considered.

Firstly I would ask about your recent breathing tests. If you are experiencing CO2 buildup, it can certainly account for sudden disorientations (like which gear am I in). I applaud you that you realise that driving is no longer safe. Please realise you have had a good warning, it wasn't something that happened whilst you were driving at any speed.

Secondly no PALS can say they are not highly stressed over their diagnosis and progression. I cannot image that any PALS no matter how well they are accepting the disease, no matter how supportive their family or friends, no matter how intelligent, are not experiencing high distress. As a CALS my brain went to mush in many ways, and I'm battling that even worse as a widow now.

Lastly, the statistics show that around 50% of PALS will experience some change in cognition which often shows as a decrease in executive functioning and often language and comprehension issues. When it is a profound degeneration of these functions it is called FTD, but many PALS experience some level problems without being put into the box of saying they have any kind of dementia. This is very different to Alzheimer's.

I have no idea what is the cause there with you, but it could be worth seeing your doctor and have your fears looked at. For example if it is a CO2 issue, it can be addressed with bipap or DPS if you are still eligible.

It must be very scary xx
 
Please see your doctor, just in case there is something that can be done.

I've had those moments myself (I'm the CALS), and I certainly hope that it's just stress! Sometimes I find myself stopped, trying to figure out what I'm supposed to be doing. The important thing about driving is that it doesn't matter what causes it if it makes driving unsafe. That you know that is a very positive sign.
 
When steve had his va assessment, his cognitive issues were significant enough that they told him not to drive. The van was not adapted for him to drive. The psychologist said 50% of pals have cognitive changes. Just like Tillie said. Steves are mostly memory, recall, and processing.
 
This could very easily be stress and exhaustion from the combo of this damn disease and having young children. However it's worth checking out with your doc. The sleep study is good idea.

Hope you get out and soak up some sunshine today, it looks beautiful out there.
Hugs,
Kay
 
>Please see your doctor, just in case there is something that can be done

Ditto that!
 
Steves are mostly memory, recall, and processing.

Same and only growing worse. Wish I had something positive to add but lately all these post and my own progression ..... well this just sucks.
 
I'm very sorry. I'm sure it's terribly frightening for you. It could be a number of things as others have pointed out, but it could also be something simple, like a side effect of medication, (if you're currently taking any). Stress also comes in to play, probably moreso than you think. Sleep study sounds like a good idea. It's important to try and isolate the cause in order to rectify it and/or treat it. Explore all the potential triggers, including current meds and any changes in dosage, etc.
 
One thing to add which I found out after I stopped driving is that if you get into an accident and the insurance company finds out you had an ALS diagnosis they will not pay. At least in this state.
 
I don't believe any insurance anywhere in the world will cover you if you are driving without declaring you have ALS and have a doctor certificate to state you are fit to drive.
 
Status
Not open for further replies.
Back
Top