Libby, I'm so sorry your husband has this disease ... but I'm glad you found this forum. There are some very helpful people here ... both patients and caregivers ... who will be able to give you support and advice. Feel free to ask questions, and express your feelings.
I'm sorry about your hubby's ALS DX. My husband was DX last August. I think the first few months or so are really hard. At least they were for me. I walked around in a fog and would cry at the drop of a hat. It does get easier. Honest. Is your husband registered with the ALS Association and with the MDA? They will give you alot of help and info. Take care. There are so many wonderful people on this forum. Feel free to ask questions.
Please take a deep breath my dear. I'm so sorry for you and your husband, but until someone finds a cure for this awful disease, we must remain as warriors!
I was diagnosed on 6/3/08, and am elated to say that nothing has progressed, worsened, gotten better, anything, since then. I am still working 4 days a week as a nurse, still yelling at my hubby and kids when I need to, still pulling weeds on the weekend and chasing the kids around to all of the ballfields.
yes, it is a tremendous emotional roller-coaster, but you are not on this ride alone! Everyone on here will make you feel like one of our family-it's ok to vent, cry, talk, share, anything you need to, and I assure you, you will have support bigger than you can ever imagine.
Never give up,
Never let up,
Never lose faith,
Hi, Libby. I haven't been here very long, either, and I'm afraid I've been doing a lot more taking than giving. But this is a great place to find people who have been there and who care. I'm sorry about your husband. It's easy to feel overwhelmed and alone when caring for someone with als. There is no point (at least in my dad's case) when you can just say, ok, he's going to be at this level for awhile, because every day he gets a little worse. And you know it's terminal, so there is no real getting better. It's exhausting to say at the end of the day, I haven't helped him get well. But you can give him your love. I guess that's the most important thing.
I am so sorry about your husband's diagnosis. My husband was diagnosed in March 08. This forum is the best for info, venting, whatever. The beginning is so hard is't it? It is such a roller coaster. My husband stopped working already but I am working full time plus. It is so hard to leave him in the mornings and come to work even though his progression has been slow.
I will pray for you.
What a tough situation, I'm so sorry Libby. I will keep you and your family in my thoughts. When you're able to, look up the ALS chapter nearest you (Duke has an ALS program as well. You may find resources there too) They can be a very good source of all kinds of information. and it's a 'starting point' - I know you feel like you've just been hit in the head with a baseball bat. Cry, talk, scream, whatever you need to do for you, your husband, or your son. Be patient with yourself. Best wishes as you begin the 'fight'. Carrie
I'm new here too,but already think i'll be here often, it seems a good place for support.
My brother was diagnosed a year ago next week. For six months I cried everytime I was alone. Then I thought heck, this is a special time, I must make the most of it. Since then we have been away five times and we are going to Lourdes, (Sth of France) in Oct. It's not easy and I still cry regularly, even yesterday, my mums birthday.
Libby, we have the time to show our love. So often life goes by quickly and we don't appreciate what we have. One thing this awful. cruel disease does is gives us a chance to make the most of every minute we have.
I will keep you in my prayers. I found my faith difficult at first, but my brothers has grown so much. Iam trying to find the strength and faith he has.
I wa sdiagnosed last summer with als bulbar onset,i am lucky that its my speech which has gone ,i do get tired easily ,but am thankfull for what I can still do.My kids 19 and 17 did a 110 km bike ride for Bettys walk and Run in Calgary in June ,I was the ambassedor for the event.And have been involved in fundraisers and have had to do some speeches etc,I just get someone to read what i have written for me.To be sure this disease is no walk in the park and at times I think it is harder on my family and loved ones than myself.I am past asking why me .It is what it is and hopefully I will continue to cope with the challenges as they come along.My message to my family and friends is do not feel sad for me.Continue to chase your goals and dreams,because if you fixate on this disease and dont live life ,well this disease wins on all fronts.So I say to your family try and be happy and live life as best as you can under difficult circumstances .I don't know your husband ,but I would bet he would want the family to live and find happiness.Good luck and be strong and tell your husband to be strong to..Carpe Diem (thats Latin for seize the day)...Kevin from Calgary