New member looking for support

Blackeyes

New member
Joined
Jul 7, 2019
Messages
1
Reason
CALS
Diagnosis
06/2019
Country
CA
State
SK
I’ve never joined an online forum before. But I’m scared, heartbroken, angry, unsure..... I could be here all day listing the feelings I have. My husband is newly diagnosed. His problems started in February and in June they sent us to an ALS clinic which is how we figured out what he had. A letter telling us to be at this clinic to meet a team of drs. We were still hopeful that it was just another round of tests.

We had two weeks to pretend before the dr took away the rose coloured glasses. They are going to start him on meds. At first they said it was to soon but a week later they said because it progressed so quickly from February..... What does that mean exactly? At the moment he has numbness in his fingers and foot. Leg twitches and aches. Can’t tie his shoelaces, has taken some bad falls.... his Job is walking. He is a line locator. So he’s walked miles and miles every day. Even with the brace he struggles. He won’t be able to work once winter hits. He barely got thru the last one.

So we are selling our house and moving closer to family and god forgive me but I love my job and having to give it up when I’ve worked so hard and put in so many hours to get where I am and to have to give it all up feels like a double whammy and I wonder will I find another job where I have the freedom I have here to do what he will need me to do and the same support from my boss and staff... and I feel guilty for even feeling like this when he is going to lose so much more.

I have read so much about the disease but have no idea what to expect and how long it takes to get to the point where he won’t be walking and there is no guide to this and I already feel overwhelmed and we’ve only just begun.

I feel like I’m standing on a ledge and just need someone anyone to tell it’s going to alright. That we will get thru this. Friends and family don’t understand they ask me if I’m ok and I want to scream I’ll never be ok again. I’m dying inside and I feel so selfish for even thinking about what I’m feeling because of what he’s feeling. He’s the one that has to go thru it. How do I help him. How do I tell him it will be ok when I don’t believe it myself?

What a way to introduce myself to you all. Forgive me for sounding like a crazy person but I feel like a crazy person. I can’t sleep I couldn’t tell you the last time I had a meal. I’m wound up so tight that I feel like any moment I am going to implode.

I came here to find someone who understands what I’m feeling. Who can give me some insight on where to go from here.
 
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Jrzygrl

Senior member
Joined
Feb 14, 2017
Messages
528
Reason
CALS
Diagnosis
08/2014
Country
US
State
NJ
Blackeyes,

One thing I can tell you is that we all have and sometimes still do feel as you do. There is no roadmap to this disease. Your and your husband's journey will be different than anyone else's. It's OK not to be OK.

We're 5 years from official diagnosis, but 7 years since trying to find answers and I still struggle to explain what really goes on to others. I have a (good) friend who keeps asking if I'm OK. I want to scream, "No, I am not OK. Nothing about this is OK." But I can't expect someone who has not walked this path to understand. This forum has been a lifeline for me. A place to get answers, support and to just vent to people who do "get it".

Try to breathe a little right now and just keep putting one foot in front of the other. It's too overwhelming to try to tackle all the "what ifs" all at once.

Sending you big hugs. Please know that you are not alone. ❤
 

ReginaS

Forum Supporter
Distinguished member
Joined
Nov 20, 2018
Messages
127
Reason
Lost a loved one
Diagnosis
02/2018
Country
US
State
LL
Hi, I just read your post and it reminded me of all the feelings that I had in the beginning. They are so true. Welcome. This is a good place and people here will understand and help. There is no guide to this. I often wished for 'road maps' for orientation and to know what would be next. The first few weeks and months were the worst. The ALS diagnosis was a big shock for us. Most of what we thought was 'our life' and 'normal' changed quite dramatically. It's a lot to digest and will take a while to settle.

We kept reminding each other about 'one day at a time' - that's all we could manage.

We moved too - to a one level home. We had the ALS social worker for our area (we connected w. her through the ALS clinic) check the house and confirmed w. her that the house was manageable for later stages w. ALS too.

We often played catch-up with abilities that had fallen away as ALS moved on. Shoes w. velcro - then it was hard to put on the socks... different socks... then more help putting them on and the shoes too. Eventually house shoes, no more socks. Many, many more changes. In time it became a bit easier.
 
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KarenNWendyn

Forum Supporter
Moderator
Joined
Jul 29, 2017
Messages
2,138
Reason
PALS
Diagnosis
07/2017
Country
US
State
Oregon
Blackeyes, sorry to have to welcome you here. People here are going through parallel versions of what you and your husband are going through, and we get it. It sounds like you have to deal with some fairly large decisions and changes up front re: work. The physical changes of ALS don’t come all at once, so you have some time to adjust, unless progression is extremely rapid.

Everyone’s course is different though there are some similarities. I am leg-onset two years ago, and I can still walk a tiny bit in the house with a walker. When I was diagnosed two years ago, I was certain I’d be in a wheelchair within several months, but the time course didn’t play out that way. All you can do is prepare for the future but live in the present and cherish what you have.

I can also tell you from the standpoint of a PALS that you as a CALS are going through this too and your fears and feelings do matter. ALS is a family disease.

Emotionally, it’s very hard in the beginning, but a lot of that levels out over time, and you and your husband will find moments of joy and ways to continue to love and support each other. We will support you as best we can.
 

Ken15

Active member
Joined
Jan 9, 2018
Messages
41
Reason
CALS
Diagnosis
09/2017
Country
US
State
South Carolina
Blackeyes,

I wrote this a few weeks back. It summarizes my journey, to-date. It will NOT be your journey, but as Karen stated above, it is a parallel version of yours.

It's not pretty, but it is real. Most on this forum will tell you, your emotions are normal for this unrelenting disease. Here, you can share those emotions freely, without retribution and, by all means, ask for help.

You've come to right place for compassion, support and information.

Ken
 

Idahogirl

New member
Joined
Mar 3, 2019
Messages
1
Reason
CALS
Diagnosis
02/2019
Country
US
State
ID
<quoted text removed>

Yes, it is a life-changer for sure. My hubby was diagnosed in March. We're still in the stage of finding out who the people in our life are there for us and who are fair-weather friends. And that's okay, not everyone is cut out to be a rock when you need it. And the people who are asking if you are okay don't know what to say or do either. I have found it helpful to tell people what's going on, coworkers, for example. Sometimes they can help you in small ways like covering for you if you need to do to appointments with your husband.

Try not to keep it bottled up inside. I went to doc for something for anxiety because I would wake up with my heart racing every night. Seek out support groups in your area and on line. Facebook has several very supportive ones. It's hard to say goodbye to the life you and your husband thought you were going to have but my husband and I have such a special bond and closeness since his diagnosis that it's one of the changes that is not all bad. I wish the same for you.We have met some very nice people on our new journey. Our priorities are different from before. We live for now. Take heart in that even though the first few weeks of this are tough dealing with the devastating news of an ALS diagnosis there will still be love and joy in your life. Hugs to you and just keep swimming❤
 
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lgelb

Forum Supporter
Moderator
Joined
Nov 5, 2009
Messages
7,426
Reason
Lost a loved one
Diagnosis
09/2009
Country
US
State
WA
Idahogirl and any other new CALS out there, feel free to start your own thread and introduce yourself. I'm sorry that both of you find yourself here.

Blackeyes, everyone has given great advice. We moved coast-to-coast, for the same reason, and so I know, it almost seems unreal for this to have to happen. No longer having "a job" (though being a CALS is the most important and challenging role you will ever have) was a wrench for me, though I squeezed in some freelancing, publications, and volunteerism. Be open to whatever paths show up.

You will get through. As others have said, there will be times of joy and peace, and times of anger, depression and loss -- often in the same day.

As to others' questions, we had a thread about this recently -- my response to all casual questions was "It's a progressive disease," and people can Google it if they want. Others had different responses. You don't owe anyone War and Peace when you don't feel up to it. There is no way they can really "get it."

As to your question, you don't have to tell him anything like "it will be OK." You can let him see that you feel all the emotions, without being overwhelmed by them. You are still in the first month after diagnosis -- don't hold back with each other, but you also both have to know that there is a forward path, as you are already doing. Actually, making a big decision like that so early shows that you are more organized than we were.

You can focus on the move, getting it done with minimal angst, try to harvest jointly the good parts like being with family as fully as possible, setting up the new home and including things that are important to the two of you, while you select/establish care with the new clinic, and as he sees your doing that with him, that will be part of the cues he takes as to what life will be like, what he can still experience and achieve.

Best,
Laurie
 

affected

Guru status reached
Joined
Apr 26, 2013
Messages
11,665
Reason
Lost a loved one
Diagnosis
05/2013
Country
OZ
State
home
Welcome Blackeyes, I'm so glad you have stepped out and joined here - you are going to need the support.
I lost my husband 5 years ago, and I was stunned when I read your post that it could have been written by me back when we were diagnosed! Everything you feel is totally valid, and you are not being selfish, you are examining every aspect of the suckiness that is ALS and how it hits both parties.

My husband was rapid progression. Other here have had different experiences than I had, yet we all go through the same internal battles and struggles, so the support works for us all.

We do have some resources at the top of the first forum - use them as you feel ready.
This one on dealing with being newly diagnosed may help you both.

Just ask, anytime, and we will do all we can to walk this with you.
 

Vincent

Senior member
Joined
Dec 30, 2013
Messages
915
Reason
PALS
Diagnosis
08/2014
Country
CA
State
ON
Hi and welcome to the worst club on the planet. As a first thing, give thanks that you live in Canada. A lot of the expenses people incur with ALS are covered by your provincial health plan. Get in touch with ALS Saskatchewan. They have a wealth of information and some equipment can come from the loaner closet. The ALS Canada website is also useful (als.ca). You are among friends who have stood where you are and know lots of tips and tricks to make your journey easier. Feel free to ask anything and everything, somebody here has been there too. A lot of bad things are coming. They aren't all happening today. Focus on today and what you can still do. And DO IT!

You are in a bad place, we've all been there. You will go through grief long before he's gone. But as things go on and you aren't quite as spun as you are now, you will come to realize you are still the same people you were before all this happened. Take strength in that. You both have a wealth of life experiences that will stand you in good staid.
Vincent
 

ARCG

Active member
Joined
Oct 12, 2016
Messages
95
Reason
CALS
Diagnosis
1/2015
Country
US
State
Texas
Black eyes,

Sorry about your husband’s diagnosis. I know we all can relate to how we felt when the diagnosis hit us like a steamroller. We are 5 years in and when we were first diagnosed ( I say we, as even though he has the disease, ALS impacted us both and changed our lives forever) I had no idea how we could handle this, all I can say, is 5 years later, it is one day and sometimes one hour at a time. Getting something for the anxiety was a help for me because the information you will receive is like drinking from a firehouse. Everyone’s journey is different, you will find good information here, but remember to make your own decisions after you have gathered information and not be influenced by what my husband likes to call ‘the good idea fairies’.

Also, when people ask you what they can do to help...don’t be afraid to tell them you will need them to be proactive and not wait for you to ask.
 

affected

Guru status reached
Joined
Apr 26, 2013
Messages
11,665
Reason
Lost a loved one
Diagnosis
05/2013
Country
OZ
State
home
@ARCG the good idea fairies - oh that is a good description!!!
 

vltsra

Distinguished member
Joined
Nov 12, 2015
Messages
321
Reason
CALS
Diagnosis
11/2015
Country
US
State
CA
Dear Blackeyes,

I'm so sorry to welcome you to this forum. I've been here going on 4 years now. We all have been through the initial shock and grief. The first six months I cried every single day. I think a lot of CALS and PALS both are taking some antidepressants, which didn't make me never cry but takes the edge off the emotions. That helps.

No one can tell you it will be OK, but I've gotten so much information and support here on the forum. Do NOT feel badly for wanting support for yourself. You are not selfish. ALS affects both the PALS and the CALS, we also have to give up things we love and dreamed of to care for our loved ones. You will need to try and find a way to have some space for yourself and keep on living life. I'm sorry you have to give up a job you love. I keep thinking how on the airplane they always tell you to put on your oxygen mask before you help others. I know you will hear "take care of yourself" but you will need to find a way to do that.

ARCG is so right about drinking from a firehose! My PALS was doing OK until March when he seemed to progress very fast, and I felt like I have had a parade going through my house ever since. What I've had to do is set priorities. I ranked what he needed most to least and have been dealing with these issues one at a time, at MY pace, not the parade's.

We all understand.

V
 
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