What am I supposed to be doing?

[mstiffany831]

Hi my husband was just recently given a 90% diagnosis of ALS in May of 2016. He has a dropped foot and his body twitches all the time. The reason the doctor won't give him 100% diagnosis is because he does not have a few of the normal symptoms.

The reason I'm posting in this forum is because I'm feeling very Los and unsure of what I should be doing as a wife and mother to our two children. Ages 10 and 7. Should I be planning vacations and living a luxurious life or continuing our day-to-day activities of work and school.? I don't know whether to cry or remain strong. Or just act and simple denial.

I'm not afraid that my husband will die because we are Christians and know that we will see each other again in heaven. I'm just sad to think that I could be living in this world without him and raising our girls without a dad.

Also we are not sure if we should fight the insurance company to get him to Cedars in LA or just settle for UCI Irvine. Any help or suggestions would be greatly appreciated. I do have faith in the Lord that his plan is the right one for our family I just want to make sure that I am doing what is right for our family on a daily basis.

 

[KimT]

Hello,

First, I would definitely get a second opinion. Fight if you must. I got three.

During the wait, you can read the stickies, and prepare by searching threads of interest.

I'm a Christian, too. If you want or need spiritual support from someone who has been diagnosed with ALS, PM me.

 

[GregK]

Tiffany, I am sorry you've had to come here, but at least you've come to the right place.

At the top of the General forum you will see a group of Sticky topics such as https://www.alsforums.com/forum/gen...0260-second-opinions-first-clinic-visits.html

Read them

 

[lgelb]

Hi, Tiffany,

UCI looks closer to you, therefore a more convenient site from which to seek ongoing care, and I don't see any evidence that using Cedars for a 2nd opinion is necessary. Both centers are certified and have reasonably credentialed faculty. If the UCI opinion is equivocal or contradictory, you can always seek a 3rd opinion in LA.

Best,
Laurie

 

[FamilialALS?]

I have experience with the UCI clinic. If you want to message me I would gladly give you some insight.

Sorry about your husband's diagnosis. You will feel well supported and armed with information here.

 

[mstiffany831]

I would love to know more about UCI and what ALS chapter your affiliated with. How long do you think it should take from finsl doctor letter to insurance about the diagnosis to being seen at UCI.?

 

[mstiffany831]

Thank you for your help and support. We are waiting to be officially refered to UCI. I would really like my husband started on treatment because he has been told he has slow progession and that physical therapy could stop progression.

 

[FamilialALS?]

I did send you a message hoping we can talk on the phone versus typing. I'm not sure if you can view those yet? Let me know.

 

[FamilialALS?]

I would encourage you to hold off on pushing for UCI. There are better options out there.

 

[lesmasodi]

I go to the UCI clinic , it's very helpful, there is no reason 2 goto Cedars. Feel free to msg me anytime

 

[lesmasodi]

I would encourage you to hold off on pushing for UCI. There are better options out there.

I would love 2 hear them but don't discourage someone from getting help

 

[lesmasodi]

Thank you for your help and support. We are waiting to be officially refered to UCI. I would really like my husband started on treatment because he has been told he has slow progession and that physical therapy could stop progression.

that's unfortunately false, there is no treatment

 

[FamilialALS?]

I would love 2 hear them but don't discourage someone from getting help

You misinterpreted my response. I would discourage pushing for UCI without hearing specifically what challenges this clinic has. There are choices and trade offs depending on your needs and priorities.

 

[GregK]

he has slow progession and that physical therapy could stop progression.

I very much hope that this was miscommunication, because, as already mentioned, it's wrong!

Physical therapy, or plain gentle excercise, can help _maintain_ strength and flexibility but NOTHING WILL STOP PROGRESSION at this time. Once muscles are unable to respond range of motion excercise are helpful.

_At this time_ there is NO CURE and the ONLY TREATMENT is Riluzole.

If someone tells you otherwise CHECK HERE FIRST! There is no end to the charlatans waiting to take your money.

 

[Buckhorn]

mstiffany831 You ask ... "Should I be planning vacations and living a luxurious life or continuing our day-to-day activities of work and school.? I don't know whether to cry or remain strong. Or just act and simple denial"> Good question, and something I deal with on an almost daily basis. Since my husband's diagnosis, I sometiimes feel that I am in an accelerated state of "doing" and wanting us to experience whatever my husband can have joy with now and as soon as possible. At times I feel like I am still in somewhat of a state ofd denial (although I totally realize and accept the facts and visual confirmantions I see in front of me on a daily basis). I would say, try to find some kind of "balance" between the luxurious life (not spending/lossing finances that you will need for yourself and your children for the future) and denial. Try to find family activities that you all would enjoy without breaking the bank. IMHO, that is what I would do. We do not have children, so whatever splurge decisions I make do not affect children.