Longtime CALS, first-time poster

erinhazey

New member
Joined
Nov 26, 2019
Messages
4
Reason
CALS
Diagnosis
08/2011
Country
US
State
GA
Hello everyone,

I want to hug ALL of you. I have felt so incredibly alone in my situation, but JUST hearing that I am not the only one having this experience has already made me feel better.

My husband is the PALS and has VERY slow progression. Diagnosed in August 2011 and just lost the ability to stand a few months ago (~August 2019). His deterioration started in his arms, then REALLY slowly progressed to legs. I express the slowness because it is EXCRUCIATING.

We have 2 boys, ages 9 and 11, and my Mother lives with us. Thank God, else there would be NO way I'd survive this without her.

I am in weekly therapy, monthly psychiatrist visits, on various meds to manage my anxiety, depression, and stress. I've had anxiety for years, but it was managed until the past 18 months ish. The intensity of home life, along with terrible work stress pushed me to need to adjust meds, add new things, cut back on other things, etc which means I've been struggling for mental stability for almost the entire past year.

I think I'm finally getting straightened out, and I firmly believe my husband has changed mentally. He will profess his love and appreciation for me regularly but flat refuses to talk to me about his condition or the future. I have been trying for 8 years to try to anticipate changes and plan for the future, but I can barely get him to talk about anything realistically. He also will not do anything proactive. Every major change that has happened, we've had to run around frantically at the last minute to get the right machine, help, adaptation, on and on.

He flat refuses to take any antidepressants, but he's a grumpy angry jerk to both me and my kids regularly. EVERY time I try to have a conversation about something important or difficult, he gets angry, defensive, and snappy. Then I blow up bc I'm so frustrated and everything deteriorates and we fight and the kids hear and it's just horrible.

Anyway, I had never heard of FTD so i'm super grateful to the contributions on this thread. I'll be researching that right away.

I also appreciate having somewhere to say, unjudged, out loud, that I wish it was progressing faster. If he goes at the same pace as his past, he will linger around for another two damn years. Our entire household is miserable. We muddle through every day, most times it's ok. Sometimes we do have 'good' days. But the layers of complexity, stress, pressure, lack of personal freedom, combined with his hair trigger, have made the future seem incredibly bleak.

I look forward to getting active in these threads, because it's absolutely impossible for anyone to understand how incredibly difficult this is. I am going to need LOTS of support. <3
 
Last edited by a moderator:

pittsburghgal

Senior member
Joined
Jan 7, 2016
Messages
518
Reason
CALS
Diagnosis
11/2011
Country
US
State
PA
Hi, Erin, and welcome. I am so happy you have joined us because my husband was also diagnosed in 2011 and was very slow in his progression.

I have posted before about how slow progression isn't always a blessing. I also fear that this may go on for several more years and I really don't have the physical or emotional reserves to continue this for many more years.

My husband also would never talk to me about his disease or funeral plans. I have had to make all decisions without any input from him.

I could see that he was depressed starting this year, although he always denied it and refused medication. He is on hospice now and I asked the hospice nurse to talk to him. She told him that a lot of people don't even realize they are depressed and when they just try the medication for a while, they feel so much better. He agreed to give it a trial and felt better and slept better so he has not asked to stop it. He takes Zoloft.

I (and all CALS) understand completely how incredibly difficult this is and we will give you great support whenever you need it. Please come here often. I can't tell you how much this has helped me.

Sharon
 

erinhazey

New member
Joined
Nov 26, 2019
Messages
4
Reason
CALS
Diagnosis
08/2011
Country
US
State
GA
Thank you Sharon. What a tremendous relief hearing someone else say words I say to myself all the time. I didn't think anyone else would understand, but finding this group has helped me feel better already. 💜
 
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