How to deal with denial

affected

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Apr 26, 2013
Messages
14,270
Reason
Lost a loved one
Diagnosis
05/2013
Country
OZ
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AU
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lala land
Jenny I'm so glad that my experience can help a little, it makes me feel like there was some kind of purpose in what I went through.

It is very hard, but somewhere, somehow, coming to a place of accepting that this is out of your control, and will take him, may help just a little as you face those losses every day. I felt like I was constantly screaming inside my head, but with antidepressants, counselling and peer support that did stop, and I muddled my way through.

Now I walk along beside others muddling along. We got you.
 

andrewf

New member
Joined
Nov 18, 2021
Messages
9
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Loved one DX
Diagnosis
6/2022
Country
US
State
MD
City
Rockville
I'm not saying this is happening, but there is a dementia that is often associate with ALS, particularly commonly with bulbar onset.

If you go my profile and the about section there is a link to some information I have written about this that may help you to look at. Many with this dementia refuse being tested for it as they don't believe they have changed at all, and it can be traumatic to insist on this.

It can just help a little to understand some of the kinds of changes that can happen - most commonly if the PALS has this pairing of diseases, the FTD symptoms actually start before the ALS, even if only mildly.

Breathing issues can also cause behaviour changes.

Whatever is happening, you have support now.

Indeed. Do you have Guamanian heritage?
 

affected

Guru status reached
Joined
Apr 26, 2013
Messages
14,270
Reason
Lost a loved one
Diagnosis
05/2013
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OZ
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lala land
@andrewf I am guessing you mean did my PALS have Guamanian heritage? No definitely not, we are both white european descent mix in Australia
 

Jenny B

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Thank you so much, Al...you are wonderful 💖
 

Firefighter58

Senior member
Joined
Jun 21, 2016
Messages
651
Reason
PALS
Diagnosis
05/2014
Country
CA
State
ON
City
Oakville
Good morning Jenny, has your husband tried buttermilk milk yet? He may not like it but he may. I find a little salt with it is desirable. It is a bit thick and I find it easy to drink and I enjoy it.
Al
 

Jenny B

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VA
Hey Al! Thanks for checking in. I tried to get him to try it after you suggested it. He's been super picky lately though and didn't want to. He doesn't seem to have much of an appetite. I had been nagging him and trying so hard to get him to get calories in... but finally asked him if I was bothering him with all of that and he said yes. So I've just backed off and just offer things here and there. He usually turns me down, but I feel good at least offering and feel that respecting his wishes is the right thing. I'm not sure what's going to happen next, but just trying to enjoy our days together as much as possible. He still likes to watch TV shows together and take walks. I've noticed he is more wobbley on his feet lately and has slowed down a lot in the last week. Our walks have gotten shorter and shorter. He won't talk about what he's feeling, but I hope this doesn't mean that the function of his legs is being affected yet. It's hard to know if it's an issue of not having energy from lack of nutrition, or the disease progressing.
 

Mary2

Distinguished member
Joined
May 1, 2021
Messages
203
Reason
CALS
Diagnosis
04/2021
Country
US
State
GA
Hi Jenny, One of the challenges I found with ALS is having the right equipment at the right time for the next stage of the disease.
My PALS progressed through a cane, walker, scooter, and two wheelchairs. We also had a lyft to go up and down the stairs for awhile....both to the second floor of the house and then also into the garage. Now we have an electric hospital bed downstairs and a ramp in the garage. ALS is all about equipment.
 

Jenny B

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06/2022
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@Mary2 - thank you so much! Great suggestion. He sees his neurologist next week, so I'll be sure we talk about how we can go about getting the right equipment for him ahead of time.

Thanks again!
 
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