This is really hard

My dear brother, one of the sweetest, kindest men I've ever known, was diagnosed a month ago. It took a couple of weeks for the shock to subside, and my family and I are all grieving in our own ways, I think. We are a close family, which I'm especially thankful for right now. I am determined to be strong for my brother, but sometimes I'm just scared and heartbroken and can't really believe this is happening. I don't know how anyone gets through this, yet I know we will.

I'm glad to have found this forum. There seems to be an amazing amount of caring and support here, and I think it's going to be helpful for my brother, and probably for me as well.

I'm very sorry about your brother. You will find lots of support and information here on the forum.

We are all here for you. It is hard. How old is your brother

Thanks very much for responding. He's 48 this summer and has two young girls.

And the thing is, I know these are the good days right now, when my brother is still okay. And I am grateful for that. I just wish things could stay like this forever.

Rose I am so sorry to hear about your brother,. You have come to a place where we think of each other as family who care and support as much as we can . Our new journey we travel together,we cry together as well as laugh together, we all "get it". And it is hard but this place is a lifeline for me and many others. Welcome and {{{HUGS}} to you and your brother. We are here for you both.

Welcome to our "lifeline" Rose. You'll find a wealth of info in the archives to help guide you and your family on your journey with "Lou". There's usually someone to share with at all hours of the day and night. I've found this forum caring and compassionate and hope that you and your brother will also.

So sorry you have to be here..we all hate ALS. This site will be a wonderful resouce for any ? you can think of. Everyone here shares information, hints and we are always there to listen. Frankly, I get better answers to day to day challenges here than from my Doctor.

Welcome to the forum, sorry for your brother's diagnosis.

I really does suck. Try and get him signed up here, it will help.

I am 41 with 2 kids as well.

Please ask any questions you need and contribute what you can.

This forum has helped many of us, in a variety of ways.

Cheers,
Casey

So sorry to hear about your brother. Hopefully he will sign up here when he is ready. This site is fantastic. You mentioned your brother is still okay.....Remember.....we all progress differently. Your brother may have a super slow progression and be okay for a long time. We are all here for you and brother. Welcome

Thank you, everyone, for your support and kind comments. It is comforting to know there are people out there who understand what this is like and are there to support each other. I am grateful to whoever the wonderful person is who started this forum.

My brother has signed up and posted recently. There were some heartfelt, encouraging responses to his post and I think that lifted him up a little. That means so much to me, especially since I live a long way away from him and can't see him very often. Knowing that this site might give him hope or at least help him to deal with his diagnosis really means a lot.

I hope in time I will have something to contribute as well.

Cathy, that's what we are all hoping for, that my brother's progression will be slow. I keep reminding myself that there are people out there who have lived with ALS for years and years. I pray that he will be one of them.

Yup, this sucks. I ache inside and wish more than anything that I could do something to take this horrific disease away.

Thanks for the virtual hugs, notgivnup. I'm sending some back your way.

Hello Compass Rose

I am a newbie too - and I am so happy and grateful to have my close family as well. Their love and support sustains me. Everyday. (although my sisters can be a little overbearing at times.. in a good way! Ha). In fact today - one arrived offering to do housework as we've had guests (from Seattle!) for a week and fresh ones arriving on Saturday. I had to get a little cross and tell her that I am entirely well enough to clean my own house - and that I will tell her if/when I need help. I know she means well (and I love her deeply) - but I don't want to get sicker quicker than I have too. I am telling you this to share my perspective - and in the hope that it may be helpful to you. I get a bigger kick out of spending quality time with my loved ones - talking about things other than ALS (even though it's right out there in our mind) and doing fun and simple things together. Visiting card shops is fun and an ice cream afterwards is the best! Give your brother the space he needs and listen when he wants to talk about it. For myself - I don't expect answers from my family when I discuss ALS - just an open heart.
Elaine

Hi Elaine,

You passed up a free housecleaning? Are you kidding?!?

Thanks for the input. It's really helpful to hear that perspective. I am going to visit my brother soon and plan to take my cues from him about what he wants to talk about and when. My goal is just to make the visit as fun and goofy (he's got a great sense of humor) and carefree as I can. It seems like the best thing is to keep things as normal as possible for as long as possible. When he was first diagnosed we were in constant contact, but I'm trying to back off a little and give him space. The last thing I want to do is make him think about it when he doesn't want to.

If you don't mind me asking, when were you diagnosed?

Hi

I prefer to clean myself. Weird eh? Ha!
I was diagnosed on April 5- so still new to me. The first 4 - 5 weeks are a blur of emotional upheaval- it was hard to tell my 92 yr old parents. In fact, my plan was not to say anything, but my siblings said it was best to let them know. My parents live an hour away - and no longer drive - so my Mom worries a whole lot. My husband and I had booked a cruise to Italy months ago. Of course, at the time, we invited my siblings along as we often travel in packs! No one could make it due to home renos and other commitments - but lo and behold -when they heard of my diagnoses - 2 couples signed up last minute (without consulting one another!) -we went on May 16 and returned on June 1 - and had a memorable (fattening) time. This past Tuesday I hosted a dinner party for my army of girl friends - 39 came - just so my Mom could rest easier knowing that we are surrounded and supported by extraordinary friends. I hope it eases her mind at least a little. I am trying hard to make the best of each day - but I do get tired. I've learned on this forum that fatigue is not unusual. I also pray - a lot! I think it's helping. I believe in angels - I meet them everyday - they're actually disguised as people. Funny I never noticed them back in my "normal"life. Your brother will get strength from your love. He may not say so - but believe me - love is stronger than words - and at the end of the day - what else matters? You are a great sister! He's lucky, like I am.

Thanks for the kind words, Elaine.

How great that you went on that cruise! I would love to go to Italy. I can only imagine how incredible the food is!

A dinner party for 39 girlfriends?!? That is very impressive! I like having dinner parties but haven't had one anywhere close to that size. I'm not sure that many people could even fit in our place.

It's sweet of you to not want to worry your parents. It must be comforting to them to know that you have a network of great friends. Good friends are so important.

My brother is a total sweetheart and tells me he loves me all the time. We were always pretty close growing up, but if anything this has brought us even closer together. I love him to bits.

Have a good night.