New CALS

[MJT]

Hi, I'm new here. My 57-year-old husband was diagnosed in September 2021 with limb onset ALS. I am sad, anxious, depressed, grateful, tired, accepting, and happy sometimes multiple times a day. I am on an anti-depressant and have medicine for anxiety, but I haven't taken it. I have a therapist once every three weeks. According to Duke ALS Clinic doctors, my husband's ALS is progressing twice as fast as average. I thought I'd give this site a try. I hope your day was peaceful.

 

[affected]

So sorry to welcome you here - it is the best place to be for the worst reason.
I totally identify with being all those things multiple times a day - this is a wild ride. I'm glad you already have some supports in place with meds and a therapist.
During my time as a CALS of a rapid progression PALS I also took antidepressants, saw a counsellor. I used this forum and a closed FB CALS group to get practical help on the day to day stuff, and the emotional support of those who understood what I was dealing with emotionally.
I hope we can walk with you and provide that too.

 

[wishmobbing]

Welcome to the forum, take a seat, relax a little!
The emotional rollercoaster on a daily basis is something probably all PALS know and understand. The fine people here, CALS and PALS alike, helped me to learn about what's going on and how to possibly deal with stuff. The little tricks and different approaches. But most of all the emotional support by people who will just get you in a heart beat.
My boyfriend was pretty rapid progression, I guess. In a sad way that helped me to power through his 13 month after diagnosis and try to really be there in that time.
ALS can always surprise you, your husband could hit a plateau. But even so rapid progression is not a sprint, it's the midway race and paccing yourself is as hard as it is important.
Having that therapist in place and the anxiety medication in your purse is a great safety net. So is talking to people and taking them along with you. Come here anytime for company or just to vent!

 

[lgelb]

A sad welcome to you. Please let us know how we can help -- no concern is too big or small.

Best,
Laurie

 

[Mary2]

So sorry to welcome you here MJT. This Forum has been a wonderful support for me. I have received information and emotional support. My PALS was limb onset and had been diagnosed with peripheral neuropathy until last year. Please ask any questions or share any thoughts or emotions. We are here to listen.

 

[MJT]

Today was horrible. I’m so sad. I feel mostly strong and proud of myself but today I’m not. I’m terrified of going through this pain. Divorced friends and friends who don’t like their husbands are bringing food etc. This sounds hideous but I don’t want to be part of their club. I want to sit quietly across from my husband at a coffee shop when we are 70. I’m so sad. Martha

 

[rmt]

Martha, I'm so sorry to welcome you here. I know what you mean about having good days and bad days. Some days I think I'm doing a great job with my PALS. Other times I'm sad and short and can't stop crying. Do you have anything you do for your mental health? I find exercise really helps me. And it is OK to be overwhelmed at times by the sadness of what is coming. I know I am on a regular basis.

I think about what I thought our future was going to be and it breaks my heart. My husband is my whole world and I don't want to think about what it will be like without him. But I also can't stop thinking about what it will be like. It is so emotionally exhausting.

I'm glad you found this forum. The CALS here are so supportive and helpful.

 

[Mary2]

MJT, My PALS and I celebrated 30 years this week and I wondered where the time went. I would love another week end away together or to go to a concert or to the theater with him. I think about whether we will have 31 years together or not. I know I don't want to move for at least 2 years afterwards. I want to rest and think about the next step.

 

[affected]

MJT oh I hear you for sure! My husband was only mid 50's when he died. I felt so keenly that I had been ripped off, especially when I would see elderly couples at a cafe together it would hit me hard.
Don't ever feel you are not being strong because you feel your completely valid loss. We get it.

 

[ARCG]

MJT, I understand. I will say, sit with your husband as long as you can, I totally understand how you feel. Even though this illness is so unbelievably difficult, you will remember the love you had for each other, and be grateful you shut the rest of the world out.

 

[KenM]

Martha, very very sorry to welcome you to this sit, but know this is a great place for advice and support. Have you gotten support from the NC ALS Association chapter? They have support group zoom meetings if that is of interest.