Help. My husband was diagnosed with ALS today.

[Miss]

Has anyone been through this with the new cut rates for COBRA? Supposedly, they are very low - often lower than what you are paying as an employee (or so we have heard).

 

[Phil's wife]

Miss,

So sorry to read about your husband's recent diagnosis. We are right behind you...our appt with bertorini is this wednesday, April 21. Based on previous tests, symptoms and progression seen in the last couple of months we are trying to prepare ourselves to hear the definitive diagnosis.

So many thoughts and feelings rotating through us in the last few weeks as I am sure with you also.

I am thankful for the support found on this forum. I have already had questions answered from the many who choose to share their stories and experiences with us.

 

[Miss]

Dr. Bertorini is a wonderful, compassionate man. I thought I was prepared to finally hear the diagnosis, but I wasn't. Now it is all so final. Try to prepare to be unprepared. This disease is just so very frightening. The members of this forum make the unbearable a little bit better. I am so grateful to have each and every one of them in my corner.

 

[handinhand]

Sorry Miss, This is so hard... just come here often and make good friends that will help you on this journey . Big Hugs,Linda

 

[BrianD]

Miss...

Regarding the cobra stuff... I have no experience myself, but here is a link with FAQs.
FAQs On The COBRA Premium Reduction Extension Provisions
One thing jumps out to me is question Q2. I think that says if you are eligible for Medicare then you're not eligible for the cobra premium reduction. As soon as you are approved for SSD, then you are also eligible for Medicare. Also since you haven't started short-term disability yet, I'm guessing you don't qualify for being terminated prior to March 31, 2010.

I'm assuming his short and long-term disability is through his employer. (I apologize if this is an incorrect assumption). One thing that was a big surprise to me that you should be aware of is that many policies will deduct the SSD income from the short/long term benefit. Another thing to check out would be to see if you can pay the premiums for the short/long-term policies. There may be tax advantages for this if you pay the premium versus his employer paying the premium. I'm right in the middle of figuring out these details myself.

Kay Marie has given good advice on SSD. While ALS automatically approves SSD, it may not automatically approve your short-term disability through his employer. You'll need to check on your specific policy for that. I just wanted to raise the point so you can try to avoid a position where SSD is approved, but you are without your short-term disability income yet.

I hope some of this information can help. Stay strong... as has been said before there are many people behind you.

Brian

 

[Miss]

Great info Brian, thanks

Terry's short term disability policy kicked in today. We have 26 weeks of short term, and then we go to long term disability. I did know that SSDI will be deducted from the long term disability payment. If we want to keep our BCBS, why do we have to file SSDI? Couldn't we just wait? That way, we get paid the same amount and can keep BCBS. I know we don't want to pay the full COBRA prices! Seems like this is a way around that. Also, the children and I will not be eligible for medicare so wouldn't that negate Q2? I hate having to deal with all of this while we are also dealing with the reality that he has this disease!

 

[[email protected]]

I feel your pain and anxiety -- a year and a few months after my husbands diagnosis and am still so lost. I have found that there is no clear cut "answer" to "what should I expect". We were told what to expect from my husband's neurologists but to date, none of the things we were told would happen "first" have. It's day by day and sometimes moment by moment.

I have learned one thing though---just because I want to proceed in one direction toward treatment, does not mean this is what my husband Malcolm wants. Of course, I want him to get better and be with me as long as possible. The hardest thing has been to accept his decisions for how he wants to proceed.

I know what you mean also about the caregiving. My husband is home alone all day - he retired two months before he was diagnosed. I have many more years to work - yes, we are a May - December marriage. I have been lucky enough to have enjoyed 25 wonderful years with my husband and want that many more! Anyway, the caregiving has me definately concerned as his disease progresses. We have friends who have volunteered---I just tell them he's ok alone now ---but I am filing away their offer to help---I know there will come a time when I need it! If I were to even suggest it at this time though, he would totally rebel! So, I take many long showers where I can cry my eyes out in my grief. I know that the last thing he wants or needs is my pity and I surely don't want him to worry any more than he already does about me.

I wish you the best and I wish I could tell you what to expect and what to do---I still haven't found that answer but, today I did find you and other people like me ---THAT HELPS --TRULY IT DOES!

Hang in there and keep us posted

 

[heymom05]

My husband was diagnosed 9/28 after 4 months of tests and wondering, praying and crying. Actually, the diagnosis was a relief from being scared. Now we prepare.

Right now, we are ok. He is still mobile. We are navigating the SSDI maze while he is still working. He moves very slowly, but doesnt show any bulbar signs yet.

We have 5 adult children and a huge supportive family that is walking with us on this path. Our Faith is sustaining us. We are a strong team. I think he is helping me prepare to live with out him, and I am helping him prepare to leave us. We have to be ok with both. I am forever thankful for all of the support we are getting. I am in awe of the generosity of our family and friends.

My only question is How do we keep this from taking over our life? ALS is not the only topic of conversation, is it?

 

[DebbyEllisen]

Miss, My husband passed away in September and my heart breaks for you along with everyone else's. I can tell you how I got organized early on, and it worked pretty well throughout. I got a spiral notebook, the kind with the spirals at the top, and kept it with me ALWAYS. It went to the doctor's, I kept it next to me while I read about ALs so I could write down a thought or a question. I wrote the names of people and places, and phone numbers, and suggestions. It was one long mess of notes, but everything was in there. I even wrote stupid frustrating comments when I was on hold forever or was put through to the wrong department and the lady said I didn't exist.

Then I got an accordian folder with about 10 tabs. Wrote: Hopkins (our ALS clinic/doctor), Blue Cross, Social Security, Durable medical equipment, clinical trials, test results, hospice, exercises.... and had a place to throw the one million papers that accumulated. Another place for booklets and pamphlets... it's a lot. It's a ton of information, a ton of worry, a ton of work. I worked full-time throughtout my husband's illness, took time off when needed, and worked from home when necessary, when I could. We kept him home and it was as good as it could be.

The social security is a pain in the neck process but do it now, that's good advice. It's like a 17 page application, then there's a few more steps. But ALS was deemed the MOST disabling disease (right...thank you very much) and they approve it without a hassle. The money starts in 5 months and comes monthly until the end of his life.

I am here totally for the same reason as pepsiman. Not an expert, but I've been there. Blessings to you. Pray, whether you're inclined to or not, if i can be so bold. You'll need, and you'll receive, strength from within. And love.

I will keep you in my thoughts and prayers, Debby

 

[Quinny]

I am glad to find this thread. My husband was diagnosed in February 10. Mild symptoms had been present for about a year. We didn't want to believe the diagnosis at first (of course) and because of his very slow progression, he had held on to the hope that it was a mis-diagnosis until very recently. This week, he is on a buddy trip out west, hiking, climbing, rapelling, rafting, dirt-biking...All activities that bring him great pleasure. The guys he is with are experienced and know how to accommodate for his limitations. But...these extreme activities have either caused or simply highlighted a more rapid progression of symptoms. His calls at the beginning of the week were full of laughter. His call last night included fears and tears. That is what I hate about this disease: the very activities that bring a man like my husband such great pleasure, will now hasten his death. Such an irony. To complete your "bucket list" will get you there sooner. I don't know if other partners have experienced this, but each time he he wants to go surfing or even to the daily gym workout, I am so torn up inside. Because I want him to do the things he loves, that used to make him feel healthy and strong, but now I feel they are just sucking the life out of him. He returns depleted and frustrated, to say nothing of the danger he's in. It's so hard for him to come to the conclusion that working his body harder makes it worse, not better. It's the reverse of the what he has always known.
I am wondering how others have helped support a partner whose life and very identity has been so tied up in the physical world. I keep telling him this would be such an easier diagnosis for a bookish-homebody like me
I know when he gets back, we will be finally on the path of accepting the diagnosis, figuring out insurances, SSD, all that. So I'm grateful for the info and advice on this forum.

 

[brooksea]

Quinny,

Your husband sounds like mine, in that he will not give up the activities he loves. Yet, there will be a time when the "golf club flies out of his hands." This literally happened to my husband (he couldn't hit the ball worth a crap anyway by that time). He decided that he would give up golf, but still did and does anything and everything he could or can. He can still watch the guys play golf as they drive him on the cart.

Your husband will have to use his own judgment, as to what he is able to do, without harming himself. My husband won't listen to me.

Good Luck!

 

[rkyoung]

You can apply to SSDI online. When I did it for my sister, I believe the approval came in less than 14 days. Another thing I did was contact the local welfare office and found that my sister was eligible for the state to pay for home health aides while I worked. I got 8 hrs of home health aide support along with all the equipment and supplies necessary for her care. The agency also arranged for my sister to be transported to her clinic and doctor appointments via medical transport for motorized wheelchairs. ALS.org loaned us the motorized wheelchair and some other special equipment so I could get her in the shower. Thanks ALS.org! You have to start with your local agencies for some support. There are programs that are publicly funded. You have to look for them, they don't look for you. Call them today!

 

[loving wife]

Im sorry to hear about your husband, i know how hard it is and the shock and grief you go through, my husband was diagnosed 2 weeks ago ! we didnt know it was coming he has had problems for 2 years and an operation on his elbow - they thought a muscle was trapped and needed releasing ! Finally we went to the consultant and he told us the news - you have ALS and then gave us the statistics....... we are still waiting for the treatment as we were told it takes 2-4 weeks by the nurse.My husband has nearly lost the use of his right arm and is now moving to his left , his speech slurrs sometimes but not always, his balance is not to good but is walking around, he is 44 years old, since the diagnosed have found it to progress faster . So now we need to move on and change our lifestyle and home to adapt to this, i have been reading that gluten free diets help ? and also antioxident drinks and vitamin supplements ect ect. Im unsure whether any of this does help but its worth a try. xx

 

[juliesmile]

I just want you to know there isn't a feeling you are having we haven't all felt. I lost my husband to ALS in Aug. I checked out of this site for a long time. It was just too painful! But I feel like I need to find a way to give to those still suffering. And all I can offer is my ear. I remember feeling so alone. I can sooo relate to that feeling that the only person I felt like i could talk to was my husband, but how could I burden him with my pain when he was dealing with unimaginable pain. He stopped sharing with me and I stopped sharing with him. We sort of grew apart. I wouldn't recommend that path, but I don't think it's uncommon. We were still very close, but we just couldn't burden the other with our pain. It's a very lonely and isolating feeling, but I think it came from a place of love. I think we were just finding a way to cope. WE knew we were going to lose each other, so we just weaned ourselves off each other. I though this would help in the end, when he was finally gone. But it has not. I miss him more each day.

The bottom line is there is no easy way through this, for either one of you. But....somehow, you wake up each day, whether you want to or not. And pretty soon it's bed time and you realize that you have some how made it through another day. And it goes on like that.

I have tremendous worries. How will I survive. I wasn't a career woman, just a barber, and now I have to figure out how to support myself and my 4 kids, both financially and emotionally. That's the hard part. Just when I think I have a bit of a handle, one of my kids falls apart, and I'm always so shocked to realize, they lost their dad, I need to be there for them!, but how can I do that? I can't even function myself. It's just an incredibly hard journey. I wish I could be more positive and supportive, but I always resented when people would try to sugar coat this. Let's be real. It's just HARD. But we can do it. We are strong men and women to be here in the first place. We didn't leave in the face of incredible pain and suffering. That is a testament to our strength.

I would encourage you to write, reach out do whatever you can to keep from isolating. I didn't exactly do that myself, but I can see now that maybe I should have.

thank all of you for sharing your stories.

Julie Smiley

 

[juliesmile]

Quinny,

My husbands story is almost identical. Yes, he was very fit and active, he was a farmer, surfer etc. Everything he did and identified was wrapped up in his physical abilities. He kept working because it kept him sane, but like you, I could see the life being sucked out of him. My experience is he will quit when he's ready. This disease always gets its way. At some point he will just find it too tiring and exhausting. I resented his working because I wanted his time, but he needed to do it the way he did it.

My husband was essentially able bodied right up until the end. I had only just begun to have to help him get out of the wheel chair and into bed. He died peacefully in his sleep just a few days after this began. I think once he realized that taking care of him was going to become more intense, he just gave up. He didn't want to put me or anyone else through that. I am so grateful for that, yet of course, I would give anything to have him back. He was diagnosed in March of 2008 his onset was in his left foot. But we think his earlies symptoms began in 2006. He died in Aug. 2010.