CALS Roll Call Continued

affected

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Do think he is having trouble coping or that there is some FTD involved?
 

rmt

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There is definitely FTD involved. He mainly has expressive aphasia issues, but he also has such a flat affect now. He just doesn't seem care about anything. He has a very hard time expressing himself anymore, which makes it that much harder to know what other issues he is having. I've tried word boards, a tablet, etc, but he isn't interested. Other than bulbar issues, he is doing ok physically. He moves more slowly, but everything still works. But he is like a zombie. I'm hoping that part of it is that he's depressed (who wouldn't be in his situation?) and that the antidepressants will help some. It is hard to know how much is depression and how much is FTD.
 

affected

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Definitely - and when we know there is FTD it can be too easy to attribute everything to it, like we can presume any physical thing is ALS related.
 
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vltsra

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RMT just want to let you know I am here with you. I have a long way to go as well. Slow progression is not always a blessing.

You say he will start on an antidepressant. How about you? I could not function without it, literally. I am at acceptance now (I think) but it took a lot to get here.

I will walk this path with you.

V
 
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rmt

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V, thank you. I started on an antidepressant a few weeks ago. I think it is starting to help. I have a follow up with my PCP on Wednesday to talk about a dosage increase.
 

affected

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V that is what my counsellor said at the end of our first session. It was a stressful session as he didn't know what ALS was. So it was mostly me describing what had happened, the diagnosis and the prognosis.
He was stunned and I was beginning to think, this is going to be useless, I don't need to come somewhere and explain everything and just blurb about my woes.
Well he sat back, looked me in the eye and said: "I can't tell you everything is going to be fine, I can't fix anything at all here. But I know how to walk the journey with another person."
Wow. I found a good one first try and he did indeed walk with me and gave great insight on how I could cope.

RMT if you try a counsellor and don't like them, try another!

I also took an antidepressant, it was essential to stop the constant scream that was building in the back of my head.

Every bit of help you can find, no matter how big or small is vital to making it through this intact.
 

Mary2

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Hi RMT, PALS and I are both on an antidepressant and this has been a good decision. I have done counseling in the past and have found it helpful. I found that counseling stopped isolation I was feeling and helped me relax and enjoy friends more rather than trying to use them as counselors. Some counselors interact more than other counselors, so I hope you find someone who interacts the right amount for you. Also on weeks that you don't go to a counselor having a regular manicurist is helpful. Not for counseling of course, but for empathy and having someone in your corner.
 
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affected

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Oh that is perfect - on the week you don't go to a counsellor a regular manicure or massage or whatever makes you happiest. We had a massage therapist that would come to us and massage us both. It was wonderful.
 
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Mary2

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I hope everyone that celebrates Christmas is having a good Christmas Eve. Even in the best of times, I struggle with Christmas Eve. We live out of state from family. I still have dinner to make and PALS evening care. There is a part of me that just wants to watch a Hallmark movie and get into bed early. PALS is more and more dependent on the Trilogy and I am feeding him more often now. His voice is getting hoarse. I average about 6 hours a week out of the house.
 

vltsra

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Wishing everyone here a nice and uneventful Christmas. Uneventful is a blessing these days!

Mary I am also far from family, but with Covid I'm wary of gatherings in any case. The caregivers are off for the holiday so I am on duty alone. Planning to treat myself to a good wine and a solo dinner.

V
 

affected

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Mary and V and all our CALS, I hope you find the most in whatever you can have over these few days.
 

Mary2

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We are having a quiet week. My son was very helpful when he was here and Christmas day went well. He will be back again for New Years Eve and Day. Michigan is playing UGA and we are looking forward to this game. I have gained weight since June. I think as PALS has needed more, I have exercised less and less. My plan is to let some of the housekeeping go and try to get back to exercising. I hope everyone has a good New Year's Eve and New Year's Day!
 

rmt

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Mary, we are really looking forward to the Michigan game too! My husband is a big Michigan fan!

And I know what you mean about needing to take care of yourself. I didn't realize the physical toll being a caregiver was taking on me until I got away for a few days over Christmas. For me, the stress is killing my appetite so I'm losing weight. I didn't realize I had a huge knot in my stomach and a dull ache in my chest all the time until they were suddenly gone! And then they came roaring back when I got home. But at least now I know they can go away! I just need to figure out how to get rid of them at home.
 

affected

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It's hard when we are told to 'take care of ourselves' isn't it?
Realising this is happening is such an important first step Robin, especially that the symptoms stopped when you got away for a bit.
I hope you can find something that can help reduce the aching and help you eat better.
Start small maybe, something you can do for yourself even for just 10 minutes each day at some point, and you might be able to then increase to more than once or for a bit longer, or add more small things.
I feel these things are so personal, what might have relieved stress and allowed some recharging for me might seem awful for someone else. But if you can start with even something small you will own it.
I know for me it was like no matter how I seemed on the outside, how well I was coping, inside I was screaming non-stop.
The thing that got me over that was antidepressants, and the rest were strategies I developed to cope. The meds just took the edge off enough that I could put other strategies in place. Small things that might seem like nothing much to someone else, but to me were really important for keeping me balanced.

Mary I love it when kids step up and make a difference!

I always responded to stress by feeling sick to the stomach and losing weight, but as a CALS I gained weight too!
 
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