I don't know where to start.

[913mommyof3]

I've never joined a forum before. My husband was diagnosed with ALS two days ago. He is 34 years old. I have been a homemaker for the last 6 years. We have three children. Twin girls aged 5, and a son age 10. We have no life insurance, and no savings. I am going to apply for SSDI for him. His insurance thru previous employment will be in effect for a few more months. The neurologist still needs blood work and an MRI to confirm all of this. Is it too late to get life insurance. Any advice on where I should look for help next?

 

[joni51]

If he has already been diagnosed I would think that you would not be able to get life ins. Make sure that you get disability for all three of your children as they will be able to draw each month too until at least eighteen. I am so sorry about this, my husband was diagnosed in October. You will find lots of info and helpful members on here, that will help you.

 

[abbas child]

I suggest contacting the ALS Association nearest you. Here is one, with towns/cities listed at the bottom of the page. I'm not able to tell which chapter is going to serve your area. They have loan closets for equipment, social workers who may be very helpful in finding ways for you to be helped.
Contact The Keith Worthington Chapter

Here is the MDA where you also can find help. Welcome to MDA, Helping Jerry's Kids

 

[brooksea]

mommy,

I'm sorry to hear about your husband.

If he will only receive SSDI, then your family may qualify for benefits from your state. My husband receives SSDI and private disability insurance payments and we qualify in our state for the children's health insurance program, but that's it. The first place you should look is here (for your kids) and do it right away so they will be covered when your insurance runs out:

KHPA - Medicaid and HealthWave

 

[Natural]

You may already know this if you are looking into SSDI, but your husband should get Medicare A and B for his medical coverage. Of course, he'll still have to pay for prescriptions and pay the 20% that Medicare doesn't cover, or have a secondary insurance plan. Hope that helps.

 

[913mommyof3]

Thank you all so much! I'm amazed at how quickly I got responses! I've looked into some of what was suggested, but other things are new to me. I have a lot of phone calls, paper work and leg work to get done. He does have a diagnosis, I am able to email his neurologist and get a response within a few hours, so I know life insurance is out of the question. He would be covered well if he didn't lose his insurance thru the carpenters union. I am worried now if he is a slow or fast progressor. He had ulnar transposition on the arm that is affected. We wonder if damaging it and causing his body to heal increased the speed at which that arm got worse. I hope to have him here for a long time. I feel so comforted knowing there are others out there in my situation and there seems to be a wonderful group here! I'm so glad I've found this resource. I am going to encourage my husband to look on here and maybe join.

 

[Miss]

We're all thinking of you right now. We've been in your shoes, newly sitting with this diagnosis - terrified. Believe it or not, that feeling will subside with time. You are right. Get into action putting everything into place. Learn to say thank you when people offer help. Don't be heroic. It's not worth it. You will need the help in the end. You might as well take it now! Many thoughts and prayers are with you.

 

[smwelder]

fyi. although your husband may not need things yet, plan at least a fue months ahead. like wheel chair access to house. start placeing things in reach so things are at chair level. talk to pt and ot about things he will need later. think about the restroom needs. cloths also he may get to where he cant do buttons or zippers. i had to start wearing sweat pants.. im so sorry you are here, but if theres any place here is where u will get great help

 

[hopingforcure]

Sorry your guy is a new member of a unwanted club. Glad you found us though. This is the most active, helpful, caring site on the net. When we get a new member like yourself, we consider it a friend, so you and your husband and family have just joined a friendship. More knowledge about MND is shared on this forum than anywhere else.
I think any new family and patient will learn more here than anywhere else.

 

[Lavender Lady]

So sorry about your husbands diagnosis. It is very frightening and a ton of work to get going asap. There is a 5 month waiting period for SSDI so get the application in right away. This forum is a valuable tool for support and friendship as you both walk down this road. We have 2 boys at home ages 11 and 13. It was so painful telling them about my diagnosis but they are also an incredible help to me. I know they worry about my safety and they help me with some dressing. I know that God has a plan for each of us and our children will have this experiance that they can draw strength from for the rest of their lives. Bless you all, my heart goes out to you. Our hearts know the pain you are experiancing.

 

[tdamess]

just to add when you get ssdi with a and b do not forget to apply for part d - that is prescription coverge you will ned that my son didnt apply for it he didnt know , so he had to wait to get scrips covered

 

[pudge44]

OK I am confused by the SSDI process e.g. hubby is still working can he start process now? what does he apply for? I know we can go online to apply ( it takes about 4 hours ) my husband is confused too can someone please let me know ty.

 

[mrsack]

We are in the process right now pudge. After some very confusing conversations, it goes like this. He can still work, although he cannot make over $1000 per calendar month during the 5=6 month waiting period. We jsut spoke to my husbands boss to see if he could go on sallary. That way he can work what he can/wants (for his mental health), but not worry about going over the allowable amount. As soon as you start the nline process, you can contact the local office and set up an appointment, but be aware, that most of these people are not immediately aware of the provissions for ALS. Make sure you read all the available information on the SS website regarding the ALS provissions, so you can "discuss" (educate) them. You are welcome to PM me if you have specific questions, as I would be happy to share our continuing experience with you if it will help.`

 

[Katie C]

Mommy: just remembered another suggestion someone gave me that was most helpful.... Get yourself a good notebook with several sections. Mine has a pocket in the front of each section and even a place to store business cards. Mine had 5 sections, so I had medical, work disability, State disability, SSDI, and ALSA. I was able to keep receipts, questions, etc all in one place. Our neuro even drew his famous diagram of upper and lower motor neuron degeneration in there (he has little future as an artist!) I realize now that it's even going to help because all my dates, id numbers etc are in there when I sit down to do taxes!

As far as when to apply for SSDI... We were very lucky that Glen had excellent disability coverage through his company... 6 months of "short term disability" where he actually received his regular pay scale then a year of long term. We also received California state disability. We applied for SSDI as soon as he left work on short term disability. Now... it gets a little confusing.... there is a 5 month waiting period. Once that period is up, they will pay you back to the last day of work. But if like us you are getting company or state disability, they will take back any "overpayment". Why, you might ask, don't they deduct that BEFORE depositing it into your account. Nobody has ever been able to answer that for me.

 

[pudge44]

all I can say os OMG it gets more confusing by the moment