CALS Concern/help

dguerrero

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Joined
Nov 24, 2019
Messages
1
Reason
CALS
Diagnosis
08/2019
Country
US
State
MA
My dad was diagnosed with ALS in August. I have tried doing everything to act normal around him. He completely lost his voice, cant do any daily hygiene on his own and has practically lost all mobility. One year ago my dad was perfectly fine it’s so hard to believe this could change him so quickly. I’m sad constantly but have tried to keep his spirits up by taking home to eat, movies and gatherings just so he stops being so sad. I can’t take him out to restaurants anymore because he starts crying hysterically. He just wants to be home and all he dose is cry. What can I do?
 

affected

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Apr 26, 2013
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11,981
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Lost a loved one
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05/2013
Country
OZ
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home
I'm so sorry about your dad's diagnosis.
His sadness is pretty understandable as he is rapidly progressing. He may have some emotional lability and this is really distressing when the person can't control their emotions.
Becoming very isolated with bulbar issues is also really common.
Does it help him feel a little better for a while when you bring food, movies and organise gatherings?
One thing to remember is that ALS causes enormous fatigue, so try not to overload him or do too much in one day or he may take several days to get over it.
I think that being with him is a really good start. How does he communicate - you say he has lost his voice.

I am sure you will get lots of support here as well as practical tips.
 

lgelb

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09/2009
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If the crying is due to emotional lability (sudden mood changes) rather than depression, Nuedexta would be worth a try -- it addresses this aspect of ALS. You/he can discuss this with a physician who can write a prescription if indicated.

But whether you are together at home or elsewhere, as Tillie says, just being with him is worth a great deal to both of you.

Best,
Laurie
 

KimT

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Nov 18, 2014
Messages
3,519
Reason
PALS
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08/2015
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The very first thing I would do is find out if his crying is from emotional lability or depression. It could be a combination. There is nothing wrong with a PALS taking an antidepressant. I take Remeron and it helps me sleep, stimulates my appetite, and prevents me from becoming depressed.

I'm sorry your dad is progressing so rapidly. It's good to spend time with him, just make sure he gets lots of rest and hydration so he isn't exhausted.
 

Nikki J

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Joined
Mar 22, 2012
Messages
7,938
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
I agree addressing the crying whatever the cause or causes. Emotional lability is horrible and as Laurie says Nuedexta likely will help. My sister had it very badly and the nuedexta was a life saver. contact his neurologist and get it assessed.
 

KateEmerson

Distinguished member
Joined
Apr 23, 2016
Messages
490
Reason
Lost a loved one
Diagnosis
09/2013
Country
US
State
MA
I see that you live in Massachusetts. There is a great nonprofit in Falmouth , Compassionate Care ALS ( CCALS ) that was so supportive to my husband and me during our journey. You may want to reach out to them , they will come to your house. Ron, the director, was wonderful in talking to my husband about his disease and did it in a very positive way. They also have Kristine who specializes in communication who saved us in this area.
 

ReginaS

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Nov 20, 2018
Messages
171
Reason
Lost a loved one
Diagnosis
02/2018
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US
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LL
My partner progressed quickly too. I read your post and my heart goes out to both of you. My partner died 16 months after diagnosis. In general, we spent time where he was most comfortable. If he did not feel OK in a place we would not go or we would leave. We went for many walks in the sunshine listening to birds w. him in the electric wheelchair. Towards the end of the walk he would drive it full speed in our cul-de-sac and leave me behind :) his hair would fly and there was a big smile on his face. Later on he lost his neck strength and that all became more difficult to impossible.
When he cried, I encouraged him and said for example "There's a lot to cry about. So many losses. Just cry and you might feel better afterwards." This would happen at home... not in restaurants though. And it was not emotional lability. If anything, he laughed more easily and readily. It was contagious.
People are different ....- for me, cheering up did not work - it cost too much energy and I felt fake. I knew I could not fix ALS and not the sadness or maybe even dread that comes with all the losses. I hoped it would be OK to be sad with each other too. I found out it was totally OK. We found much acceptance and it was heartbreaking.
 

ARCG

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Joined
Oct 12, 2016
Messages
123
Reason
CALS
Diagnosis
1/2015
Country
US
State
TX
My pals is happiest at home. Right from the beginning we said we would listen to his body and what he wanted, and he feels comfortable in the home environment. Technology has equipped him with a ‘window on the world’ and he prefers this to what other folks who are not physically disabled want him to do.
 
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