Old 12-16-2018, 01:49 PM #61 (permalink)
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Default Re: Just found out - please help.

I started a new thread in General for your important new topic. One thread rule does not apply to CALS and PALS.
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Old 12-20-2018, 01:18 AM #62 (permalink)
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Default Re: Just found out - please help.

Update: we went to Mass General Tuesday. It was what we needed it to be. We met with the team and got what they called some “optimistic truths” - my husband does not have rapid progression and he is is doing okay for now. We talked about radicava and briefly discussed trial options.

Everyone there was incredible and we spoke with Paula Rauch about telling our children which we did when we got home. I feel like I can breathe a little.

I cannot thank you all for helping me get to this point. I’m thinking about this journey right now as a car on a dark road, only looking as far ahead as the lights shines. Trying to live in the light.

My best wishes and kindest thoughts for all of you. Thank you for being in the light with me. Peace.
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Old 12-20-2018, 04:11 AM #63 (permalink)
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Default Re: Just found out - please help.

How wonderful to see you have made some pretty big steps forward, and got over a couple of huge hurdles too. Great attitude - don't try to look too far ahead, especially just now. I'm so glad you have made this leap forward.
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Old 12-20-2018, 04:33 AM #64 (permalink)
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Default Re: Just found out - please help.

I am glad things went as well as they could.

Hoping you and your family can find joy this holiday season
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Old 12-20-2018, 05:05 PM #65 (permalink)
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Default Re: Just found out - please help.

Thomas, I am so wowed by how far you have come on this journey in the past two weeks, since you first posted this thread.

I think you and your family are going to do as well as can be within the context of a situation where there are no winners, if that makes sense.

I’m glad you got over the hurdle of telling the kids. I hope this holiday season brings you some peace and joy.
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Old 12-29-2018, 02:43 AM #66 (permalink)
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Default Re: Just found out - please help.

I wake up multiple times every night. And every, single time I wake up, the first thought is: my husband really has ALS. This is really real. And then I hear him breathe and think: one day he won’t be here. And, my heart breaks again.

Does that ever go away?
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Old 12-29-2018, 03:45 AM #67 (permalink)
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Default Re: Just found out - please help.

Sorry for what you both are going through, Thomas.

I can't promise a complete return to restful sleep, but it won't always be about knowing how he'll die -- it will be deciding how to live, until he can't.

Best,
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Old 01-09-2019, 10:59 AM #68 (permalink)
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Default Re: Just found out - please help.

I can feel and understand your fear and disbelief.. My husband was oficially diagnosed in November after a year and a half of testing and hoping it was not ALS. He is scared and depressed and it is very hard sometimes to always try to lift him up when i am scared and sad myself. I am not sure some days i can do it. We have a 14 year old daughter who is still at home so for her i have no choice but to stay strong . I am glad to have found this group and to hear how others are or have handled things. I have not found many resources in my area.
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Old 01-09-2019, 02:37 PM #69 (permalink)
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Default Re: Just found out - please help.

I am by no means an "expert" but here are some things I suggest based on the month I just had after my husband was diagnosed in Dec.:

Find a few friends who you can call when you are feeling overwhelmed. Talk to others so you can be strong for your daughter. Let your husband vent to you but also be honest with him about how you are feeling. Use your support system to hold you up as much as possible.
Mornings were/are a bad time for me so I set up a daily call with my friend for the first few weeks.

Talk to your doctor (primary care) to get help with sleeping. If you need to take medication to help DO IT. If you need to have a physical, have one. If you need help finding a therapist, get one. Just like on a plane when they say that if you have children you need to administer your oxygen mask before you can help your child, you need to.

If you can take time off from work (if you work), DO IT. Let yourself plan, learn, sleep, read and spend time with your husband and daughter. It will make you feel better to be with your family.

Take car rides to just cry and process (makes it easier to cope at home).

Call your local ALS Chapter (Upstate New York) and ask for help. Contact Us - The ALS Association Upstate New York Chapter

Talk to your husband's doctors if you think it will help -- Find hope and encouragement where you can. Ignore the people and the things that stress you out and seek out the people and things that make you feel calm.

Decide that you are going to do what your husband needs and give yourself over to it completely when you are ready. It will make you feel in control and that you have a plan.

Hang in there -- I know I sound all big and bad in this post (and bossy - sorry!) but I am still in shock some days. I am so sad and angry that my family is going through this but most of the time, I am okay. For now. I did not feel that way a month ago (he was diagnosed on 12/5).

I'm so sorry you are going through this -- it is terrible and unfair.
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Old 01-09-2019, 03:11 PM #70 (permalink)
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Default Re: Just found out - please help.

A sad welcome, TM. Feel free to start your own thread and introduce yourself a bit. What resources are you needing in Buffalo?

Best,
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Old 01-10-2019, 08:36 AM #71 (permalink)
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Default Re: Just found out - please help.

Thomas,
It sounds like we are in about the same boat as far as timing, We found out at the end of November.
We had the Social worker from the ALS Association over the week before Christmas to meet with us and talk about what they can help us with and give us an introduction.
I think the scariest part is you need to plan but you have no way of knowing what to plan for.

My husband has no use of his left arm at all and his right is becoming weak so it is harder and harder for him to do the everyday tasks that we all take for granted. It is heart wrenching to watch the one you love deteriorate in front of you and there is not a thing you can do.
My husband worked with his hands his entire life so he is having a very difficult time with it.
Luckily it has not affected his lower body as of yet so he is still able to get around. You just have no idea where you will be in one month or one year from now.


I agree with you 100% about taking care of yourself first but sometimes that is easier said than done.
My teen age daughter is having the hardest time of all, i have reached out to a few people to see if i can find a therapist or someone for her to talk to.
Being a teen age girl is difficult on its own and this adds an element i would not wish on my worst enemy.
I have found the shower to be my cry time. I put up the music and take unusually long showers at times but it is needed...

I do work which has been a life saver for us because i carry the health insurance but my husband is home by himself for most of the day which is not easy for him. I am trying to find things for him to do but with his limitations that is not easy. He is also very depressed which does not give him much motivation to do things also. I can not even imagine what he is going through.
I am sorry for you also and anyone who has to go through this. I appreciate your thought and kind words and it is nice to connect with someone that has a true understanding of what i am going through.
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Old 01-10-2019, 03:23 PM #72 (permalink)
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Default Re: Just found out - please help.

I know it's easier said than done. It was like when I had my children and they would say: "sleep when the baby sleeps" which is utter nonsense. No one can do that!

Everyone has asked me: "what do you need" and I want to say "I need my husband to not have ALS -- how does that sound?"

It sounds like you are doing all the "right" things but there is just no way to do this right. Everything about it is wrong.

I am so sorry for you and for me and for all of the good people here on this board. My wish for you is that you find one thing today that helps you even a little bit --

Finding a therapist for your daughter sounds like a good idea. I have a 15-year-old boy who "doesn't want to talk about it" so I am looking for a therapist for him, too.

Hang in there...
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