husband with ALS

[mearl104]

My husband age 49, was diagnosed with ALS in August 2015. He started doing test in April when he noticed a sore throat. He lost 50 pounds(muscle) from April to August and noticed his arms were very weak. He was diagnosed August 27, and the doctor told him he had 3-6 months to live. We asked for a second opinion and it was confirmed in Houston, Texas but was told everyones conditions are different and no one can tell you how long you have to live. We are scheduled for a follow up appointment in a couple of weeks to hopefully have some questions answered. We are very new to this. He has had to stop working and has very strong legs so able to stay alone(while I work) as of now. His arms are getting weaker, and his speech is understandable most of the time. We joined a support ALS group and they have given us advise as to adjusting and preparing our self and home. We just ask for continued prayers and any advise others may have. Thanks,

 

[Atsugi]

Mearl, Welcome. I'm sorry to hear about your husband. In reality, everyone is different. I'm surprised your first doctor gave such a short prognosis. Usually they give the standard, 3-5 years.

This is what I did: Whenever we went to see a doctor, at the end of the appointment, I would let my wife (with ALS) out of the office first, excuse myself, then go back in privately with the doctor and say: "I need to plan. Do I build a new house for us? Tell me what you really think." Each time, the doctor was quietly honest with me and said "I don't expect her to last a year." I kept it a secret from my wife, but it helped me plan for her care.

Apply for Social Security immediately by phone and ensure they understand to expedite the case under the TERI program for rapidly terminal illnesses. You should receive your checks after a five month delay and be given Medicare A without any delay after that.

 

[mearl104]

Yes, we applied for Social Security and even with ALS being terminal because of our assets (which is just what we have worked for all our life) we have to wait 6 months. It got approved right away though.

Yes, those are my questions for the doctor, how do you know what or how to plan? Thanks for the encouraging words, I didn't realize there were so many people with ALS it is good to hear other stories and to see you are not alone. Thanks

 

[Nikki J]

Sorry to have you join us. Yes the wait for ssdi ( which we earn by working) is 5 month from when you have to stop working if you have a TERI illness and you get your check month six. They automatically screen for ssi which has aneeds test when you apply. They should start counting from when he had to quit even if it was before the official diagnosis though.

It is so very hard to know how to plan but it is far better to stay ahead of needs plan for the worst and hope for the best! If you have not please read the sticky posts at the top of the general discussion sub forum. There is a lot of information start with the top ones and then read through when you can. They were written by members who are living/ have lived this. The search function can yield a lot of good information and of course you can always ask

 

[scaredwifetx]

I am sorry to welcome you. We also live in Texas and Steve received his diagnosis in August. I continue to work full time. There is a lot of support here and I think they are more knowledgeable and helpful then any medical association. You can count on support and answers to you questions here. I have learned that every case is different and to plan for the future while also living for each day. Prayers and thoughts for you and your family.

 

[anderkling]

Please be assured of my prayers. I know what you are going through with a diagnosis of ALS. It can be overwhelming and devastating. What I've found helpful for myself is to take one day at a time, gather information, draw close to each other and reach out to those close to you for support, savor the good things in life, and create memories together. Life can be richer and fuller in the face of a terminal diagnosis. I certainly don't understand how a doctor can know at diagnosis that your husband has only 3-6 months. Each person's rate of progression is different, and unless your husband is having significant breathing problems already, I would put this out of my mind.
Charlene