Husband just diagnosed

[Jhill]

My husband was just diagnosed with ALS. Symptoms started in December but seem to be moving quickly. He just turned 65 and has always been on the go. I'm trying to do one day at a time, but am overwhelmed with the big picture. It's scary to see what's happening to him & how it's affecting him. Any coping tips?
Thank you so much for just being here.

 

[BillH]

Jhill, sorry to welcome you here, but this is the right place to be. After you get some coping tips, please feel free to ask anything because the folks here are so gracious about sharing and helping and holding each other up.

My tip would be take a deep breath and remind yourself you DO NOT have to have it all figured out by tonight. Sometimes 'one hour at a time' is all you need to worry about. God bless you and your husband.

 

[Nikki J]

Hi very very sorry. You do need to take a breath as Bill wisely says. We are happy to try to help. Also when you are ready read the sticky posts that are relevant to your situation. You will find them at the top of the General discussion subforum. There is also one on VA benefits if he is a vet that is in the military subforum.

Our CALS are wonderfully supportive of each other so you should consider participating on the CALS rollcall and any other thread that catches your interest

You have of course posted in the right place now. Feel free to browse quietly, use search function or ask any questions you think we can answer. So sorry to welcome you

 

[affected]

Very sorry to welcome you here Jhill.

We will support you and have lots of coping tips. Usually it's best to let out a bit of a rant about something that is hard to cope with and we can respond.

The stickies give you some practical stuff - start with the one on coping with a new diagnosis - it may help you with something specific to talk through with us.

Don't be afraid to ask something even if you think it may have been asked 100 times before xx

 

[lgelb]

Welcome, J. Sorry that you find yourself here. One way to think about it is that your husband is as or more scared as you, but guys find it harder to say that. I'm not advocating some huge gabfest if that's out of character, but you will find little ways to let him know that you care.

If you set aside some time each week for thinking and planning the "big picture," you'll stay one step ahead. Make use of the "Search" up top link in addition to the stickies and of course the posts. Ask anything at any time.

Which clinic are you using in Philly?

Best,
Laurie

 

[Buckhorn]

Hi Jhill. Very sorry to welcome you here. I really know how you feel ....... My husband was recently diagnosed as well. I had some familiarity with ALS, so I was absolutely devasted & in "shock fog", as I think Tillie calls it in her sticky post. I had to be put on anxiety medication. I lost 26 pounds in 5 weeks, couldn't sleep, had nightmares when I did sleep, couldn't focus - etc. I too was focused on the long range/big picture; that is my nature to be a planner. Anyway, the medication and a bit of "talk therapy" has really helped me out. Do not think you are weak if you decide to try medication as well. This forum is frequented by some very kind and responsive people. It is a form of therapy to come here and read that you are NOT alone. Excellent advice given by Bill - "....you DO NOT have to have it all figured out by tonight. Sometimes 'one hour at a time' is all you need to worry about." Also, read the stickies - very important resource there.

Again, sorry to welcome you to the club no one really wants to belong to, but we will be here for you.

 

[Buckhorn]

sorry ...... "devastated" (I am not permitted to edit yet).

 

[KatieNBoyd]

Hello Jhill, hugs to you as you begin this journey, the pages and the people here are truly one of a kind (if that is possible) feel free to ask, whine, laugh and cry all that the same time. There is ALWAYS someone here to help you along.

 

[Nuts]

Welcome to our little family, Jhill. As you can see, folks here are supportive, so feel free to ask any questions you have.

Coping--that's a GREAT question! Some of us end up on medication to help get things under control. I waited a year, and by then I couldn't shut off the waterworks. The first months are aweful, and the answer to coping is maybe even worse--acceptance. I accept the situation and don't think about what has been taken from us. I try not to think about the future that we won't have together. I just focus on trying to stay ahead of his progression with equipment and modifications, keeping him as comfortable as possible, and enabling him to do what he wants to do with the time and energy that he has. Oh, and some effort must also go into your health and safety. the list of things I need to do looms so large that I seldom have time for those breakdowns...

Becky

 

[scaredwifetx]

So sorry that ALS has entered your world. It is very hard and terrifying in the beginning. We go through shock, fear, grief and utter terror. We try to handle and prepare for every need our PALS have. My words of advice are to let yourself have some time to grieve and settle down. Contact your local ALS association and have them come out and visit with you. They will guide you and have a lot of support systems in place as well as programs to help with a lot. Set time aside each week for taking care of the medical needs of your PAL, time for learning what you can about ALS and login in here. The support and wisdom on this forum will be the biggest blessing you will have.

Any question or fear you have can be shared here and everyone really wants to help. Sometimes I just read the posts and don't respond but learn so much. The most important things you must always remember to do is to take care of yourself and if you need something for stress please think about it. Always set time aside for you.

This is everything I have learned since that horrible diagnosis day in August. Warm hugs nd thoughts you way!

 

[Jhill]

We were fortunate to find the ALS center at Jefferson. The staff is wonderful. Thank you.

 

[Jhill]

Thank you all for your kind words and encouragement.
I know I will be back here often.

 

[vltsra]

Jhill, Sorry to welcome you here. My husband was diagnosed in October. It is a difficult and sad journey, and we are only in the first stages as well. I have been taking an anti-depressant for about 3 weeks now and it has helped me tremendously to cope with the sadness and fear, and to be present and strong for my PALS.

I've found so much support here on this forum, don't know what I would do without it. I have been able to find better care and take the best steps to advocate for my husband. I also feel that I can express myself here as much as I need to.