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Islander1019

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Jun 26, 2018
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Loved one DX
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05/2018
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US
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CA
Hello Everyone, we’re having a really rough day today so I decided it’s time for me to reach out. My husband got his first diagnosis 5/21/18 and a second opinion confirmed it 6/14.

He started noticing weakness in his arms on one side just after Thanksgiving. It then progressed to the other side. We got married at the end of March. By the time my insurance kicked in (he’s retired) in mid April we were becoming really concerned. He had an MRI of the brain and the spinal cord and an EMG with the first neurologist who told us he was 99% sure it was ALS. The second doc did a bunch of rule out blood tests and more extensive EMG testing all of which confirmed the initial diagnosis.

We are both devastated (and who isn’t right?)

The thing is, I’m an extrovert and he’s an introvert. I have a huge support network. He has a very supportive family, but they’re on the east coast. He just moved here 2 years ago. He doesn’t want anyone to know. Not our best friends, not our pastor, not even my dad! I have not been able to comply with those wishes because I need support.

He is really angry with me about this. I am trying not to respond with anger. I know it’s not about me. But I need support too. I would really appreciate hearing how I can best support him now while we get our arms wrapped around this.

Oh, and I forgot to mention, he told me today he isn’t ready to talk to anyone about this. The only person who has talked to him about it is my dad, who loves him very much.

The problem is, he won’t talk to me about it either and doesn’t want to read, go to therapy, or even really talk to the doctors. I am reading tesearching and planning for the future, but I need to be able to talk to the people I know care about us. I am just feeling so sad today.
 
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ShiftKicker

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Islander, I am so sorry to welcome you here. What a terrible time for you, and so many changes and overwhelming feelings and worries. You will find the Caregivers here an amazing, warm, supportive and practical bunch. You are in excellent company on this forum.

Take some time to look around- the "search" function can be very useful if you have something specific you might want to view. Know that you can ask any questions or just unload with people who know what you are going through. I am sure more folks will weigh in with excellent advice or direct you to some good places to start, should you need information right away about anything.

Fiona
 

KimT

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I'm so sorry. It will take some time before you both get over the shock. One thing I would say is that one person cannot possibly handle a PALS alone after they completely lose their mobility. For now, get the counseling and support YOU need and start making preparations for the future. He's lucky to have you. Talk to your pastor about it. Eventually he'll probably come around. Most of the anger is likely coming from his diagnosis but you are the one he is lashing out at.

I'm so glad you have a huge support network. Some of them will be there for you and others won't.

Take time to let the diagnosis sink in for him.

Ask any question you want here. We will all be part of your support team.
 

Islander1019

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Joined
Jun 26, 2018
Messages
4
Reason
Loved one DX
Diagnosis
05/2018
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US
State
CA
It feels good just to hear from you all. Such a kind and supportive group you have here. Thank you.
 

lgelb

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Very sorry for your new burden, so soon after your formalized commitment to each other, Islander. It was only a couple of weeks ago that it was confirmed. An introvert -- well, anyone, will need time. If you talk to others, try not to let him know if you don't want further discord.

Don't expect him ever to read, go to therapy, etc. Many PALS never do. You can do those things. I'm sorry, but that is the reality. You know whom you married. He may talk with you the bare minimum (more transactionally) about ALS for some time to come, rather than the full-throated discussions that you may have with others. Everyone copes in a personal way. There really is no acceptance, no coming to terms, so there is no cookie-cutter solution for making it work.

I suspect from your history that he knew something was seriously wrong before you were married. People do. He may feel guilty that he did proceed with the wedding anyway. As much as anyone, he needs "we are in this together," but not yet.

There will be a time when you can say "I told X," and he will accept that. But that day has not yet come. Again, this is very new for both of you. As I am sure you have, just keep letting him know that you are ready to listen in fits and starts any time. All I could say on the day we learned the certainty was "I'm sorry." He has to deal as an individual first, before you can deal as a couple.

Best,
Laurie
 

affected

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Sorry to welcome you here.

The shock of diagnosis is huge and not to be discounted. I think PALS and CALS usually react differently, partly because of that, but then each person reacts differently as well, and yep personality comes into that too.

Please try and be kind to both yourself and your PALS as you both try to navigate through the headwinds of the storm. You will both move past the initial stage of having that bucket of ice tipped over your heads. How you will both deal will then slowly be worked out.

CALS often are the one that has to look ahead and plan and research. Not always, but there are a heap of people here who will help you without breaching his feeling of you being the one to tell too many people you both know.

I had the same thing when my Chris was first diagnosed and yet he was the extrovert and I'm the introvert :) I didn't want to tell all and sundry, but I did want some deep conversations with people who could support me.

Deep breath, step back, know that you don't have to learn everything or do everything today. One day at a time, just an hour when a day is too much.
 

wishmobbing

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Joined
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Messages
720
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Lost a loved one
Diagnosis
07/2017
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DE
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Germany
So very sorry to welcome you. I'm glad you came here. Reaching out is good. You two can't do this alone and talking helps (at least it helps you). You can't force him to see it in a certain light and he most definitely needs time to process.
My PALS was very open about his disease right away and that made it easier for me. I could not have kept something like that to myself or I would have withered.
Give him a little time and tell him that you meanwhile need to get informed and talk to people to stay sane. If you want to be there for him he needs to look out for you and you need to cope with this in the way that comes natural to you.

Come here often, we're there for you!
 

Chincoteaguer

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Messages
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Ditto on all that has been posted about your recent diagnosis. I know it's your husband's diagnosis but as a spouse caregiver (CALS) you've been diagnoised too.

As a spouse CALS myself I can relate to what you might be anxious about. This forum has been the most important and useful part of my caregiving. It would be much harder for me withrout the support and sage advice of many on this forum. Keep active on this site.

As for extrovert vs introvert, I am more extrovert than my wife although she is no introvert. She likes to control things and I let her as much as possible. You may want to do the same. I try to keep her informed about everything related to her care.

If your path is like mine your PALS will progress in stages as he experiences failures. These plateaus will be beached and there will be a new norm with less abilities. Although scary you will adjust to these new norms. Expect and plan for them in advance.
 

KarenNWendyn

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Welcome Islander. I’m sorry your husband appears to be in such denial. Keep in mind that he’s probably terrified and is trying to cope by denying it.

Unfortunately one can’t hide ALS, at least not for very long.

The best thing you can do is keep yourself informed about the disease and stages he will go through. Be present with him, show him you care and that you are there for him. And please taste care of yourself.
 

whereswaldo

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Joined
Mar 3, 2018
Messages
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PALS
Diagnosis
06/2013
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US
State
Ca
Welcome and I'm sorry you have a need to be here. I live about 3 hours north of you. If you need the names of some ALS clinics in your area let me know. There are at least 3, if not more, within an hour of your area.

I was some what like your husband at first, we told immediate family, right away, but I was not ready to tell the world. I needed some time to level it out in my own head. It can be a big thing inside his head that he will need to come to terms with as best he can. Hopefully before to long he can talk about it some. Just remember that you being the caregiver, you will have an important roll in all of this, he will need you later. And, as some one said earlier, maybe he feels a little guilty about bringing you on a journey no one had plans for.

Good luck and let me know if you need help with clinic names.

Bob
 

affected

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I was just remembering too that my husband had emotional lability - he really hated the idea of telling people because he would then have their emotional reaction to deal with which would spark him off (and he had it full blown and so could laugh when something was actually very sad).

After telling those very close to us I hated telling people because I didn't feel up to supporting and dealing with their reactions to it all.
 

MVFinVA

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Joined
Sep 5, 2017
Messages
111
Reason
Lost a loved one
Diagnosis
05/2017
Country
US
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VA
Islander,
So sorry to meet you here!

I am an extrovert and my PALS is and introvert too. In addition to the ALS he has FTD (frontal temporal dementia) so he couldn't really talk to anybody about it, but he didn't mind if I did.

I would highly recommend a CALS Support group. Check the ALS Association web site for your area and check for locations and times. My first two meetings one of my best friends went with me for support. In the last year I haven't missed one and I won't if I can help it. I have received both emotional and informational support at the meetings. In fact, tomorrow two other CALS and I are meeting for brunch. I am torn between discussing ALS things with people who totally understand, and just having a fun time.

We have a very supportive church family, but I have found it is great that my best friend now keeps people up to date on the situation. My PALS can't attend anymore and it is hard having people ask me every week how he's doing. So my friend tells them and they feel they aren't upsetting me.

(((Hugs)))

Mary
 

Islander1019

New member
Joined
Jun 26, 2018
Messages
4
Reason
Loved one DX
Diagnosis
05/2018
Country
US
State
CA
Thank you all for your caring and thoughtful responses. I know that I cannot begin to imagine what is like to be the one actually diagnosed. It is so good to hear from the PALS here as well as the CALS.. I am working on my natural tendency to direct things and take my cues from him. I know he is afraid and he is very afraid of the burden even the knowledge of the diagnosis will have on his family. We have not told his kids or mine yet. Still coming to terms with how to do that. I just so want him to understand how much we love him and that we will all be here with him every step of the way. I am worried about that he is not going to fight, and that is very scary too. Thank you. And thank you Bob. We are at the ALS clinic at Stanford.
 

wishmobbing

Senior member
Joined
Dec 5, 2017
Messages
720
Reason
Lost a loved one
Diagnosis
07/2017
Country
DE
State
Germany
Getting over the threshold to tell all the (I assume grown kids) will be hard. It will get harder though if he/you wait too long because there's always the obligatory expected response "Why didn't you tell me right away?" and that makes you not want to tell and then you wait and... You get the idea. Coming to terms takes some time. The kids might well be part of this, too.
You will find your way through this mess and be a great CALS.
Just a personl opinon to end: Fighting is not always the best. There's times when giving up is much better on the mind. The sugar-coated word for it is acceptance and that will get you a long way and enables to keep going with what's possible.
 

Islander1019

New member
Joined
Jun 26, 2018
Messages
4
Reason
Loved one DX
Diagnosis
05/2018
Country
US
State
CA
Your point about fighting vs acceptance is a good one. I guess by fighting I really mean doing all he can to live his best life with ALS for as long as he can. I have no intention of pushing him to accept life prolonging measures he doesn’t want. I am desperate to know how to help him keep his spirits up and enjoy the time we have together. I am trying to just be here, listen and keep my opinions to myself unless i’m asked and that can be difficult for me!
 
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