Status
Not open for further replies.

applesos

Member
Joined
Aug 19, 2014
Messages
21
Reason
Loved one DX
Diagnosis
07/2014
Country
US
State
fl
City
Lady Lake
My husband was diagnosed with ALS by our neurologist on July 23, 2014. While I'm sure that he understands how serious this is, he doesn't talk about it with me or anyone. He wants me to tell friends and family that he has a neuro-muscular problem and is getting medication for it.
His diagnosis is devastating for me, too. I love him dearly; I know that we're in for a very difficult future and I really need the support of friends and family. I feel like I'm in a bubble; I'm dying on the inside but trying to act like all is well on the outside. It's killing me.
How do I get his permission to just tell people what's wrong? It's obvious that his shoulder muscles are gone and he can't use his left arm, so people are asking. A couple of times, I've just started crying. How can I explain to him that keeping this diagnosis secret is not healthy, especially for me. I'm sure our friends suspect the problem, but everyone is trying to tiptoe around the "elephant in the room".
 
wow, that is really tough. but it is really new to you both and it takes time. CALS go straight into care/fix/deal with it mode. PALS are dealing with an entire different set of issues and sometimes the two do not mesh. but this is your PALS battle to lead the charge, we (CALS) are just the back up support team.
the big thing at this point is immediate family, when ever it is time to start telling people they need to come first, hearing it through the grape vine is not how the family needs to find out.
Give your PALS some time, he has a lot to digest. and join us over in the CALS section. the pity party thread is long but it will help
 
You explained your needs very well to us. Have you tried doing the same with your husband?
 
ps. it took a good 6 months for us to digest and then tell the kids and family. and for that time saying a a neuro-muscular problem wasa lot easier to say than ALS, and it is still the truth just not with all the nuts and bolts
 
You explained your needs very well to us. Have you tried doing the same with your husband?

always the wise voice around here :)
 
We waited a year before we told our kids. Told other fopks I was having muscle issues for 6 to 10 months. Didn't tell my folks for 5 months.
 
So, so, sorry. If I couldn't talk about it, I'd be a nut case by now! The advice to tell him how you feel is good. And if that doesn't work, talk to us. All of us CALs are in the same boat, experiencing the same fears and loneliness. No one that isn't living this can really understand. Even though I talk to family and friends about what is happening, I try to keep up that cheerful front and not dwell on it. So coming to the forum will remind you that what you are feeling and experiencing is normal and you aren't alone. You will get lots of support and understanding here, and some hugs from afar!
Good luck. Donna
 
I was diagnoed a month before your husband and there are still many days I cant deal with it. He should start on riluzole immediately even though its not much in the way of help.
If he has any bulbar symptoms Nuedexta is very helpful in many cases. Get to an ALS clinic as soon as you can. The earlier you start treatment the more time you will have, and there is also the possibility of getting into a clinical trial.
Pretending nothing is wrong will do him no good.
Also be very careful of falls-any damage done will speed up disease progression and whatever you do, dont go near anyone with a cold. We lose breathing function that does not return.
 
Neil, on your advice, talked to our VA neurologist today about the nuedextra. Because she said it could cause heart issues, would only do it if we drive there for a trial dose, and wait 4 hours to make sure there are no after effects. She is sending him a suction machine? instead to try for the mucous, swallowing, saliva issues. It's a 3 hour round trip drive so will probably see if other suggestions help first! Those long drives are so tiring for him. Did get some cola today and looking for the papaya enzymes as others have suggested. Anyhow, thanks so much for the info.
 
CHEERLEADER: When travelling to the VA (two hours) was difficult for my PALS, the VA travel office arranged for us to stay at a contracted hotel the night before our appointments. Ask your doctor to make the request for travel orders. Each VAMC has contracts with local hotels for vets who need help traveling.
 
Just want to add that if your husband is a veteran, take his diagnosis papers to your pva rep (paralyzed veterans). The va will be a big help with both medical equipment and supplies. They will also provide devices that make life easier and more enjoyable for him as well as income. ALS is considered to be service connected with 100 percent disability rating. And don't forget to ask about special needs funding as he worsens.
 
Welcome to our group applesos

This is really tough and I was there.

I would try talking to him about how you feel and see if he will agree to you both, or you alone, just telling someone or a very close couple of people. This may help him feel some control still (by saying who can be told), but allow you to start having some support and understanding, and also ease him in to the awful place of 'telling people'.

With my husband, he was adamant he did not want his adult children to know for some months. I needed support and quietly told my children. He found out and was furious, mostly because he had not controlled it and he worried they would tell their step brother and sisters. I assured him that they would not do this, and of course they didn't.

Strangely only days later he started telling some other people, and then I started to worry his kids would find out by other people!

I think it is a bit like it is a big acceptance of the whole thing if everyone knows.

It's hard to be patient, you need support too. I hope we can give you some of that while you go through these early months.
 
Show him those Ice Bucket Challenge videos. Tell him that ALS is nothing to be ashamed of -- that the world is learning about the disease and many people want to help.
 
The other part of the icebucket challenge that may be relevant. If you say as he wishes neuromuscular problem be prepared for is it ALS? questions. It is on people's minds. It is hard at first. My sister did not even want to tell her husband. And for over a month no one knew except him and me. Can you at least negotiate permission to tell one of two trusted friends of yours so you have someone to talk to face to face? Or your clergy person if you have one?
I am very sorry
 
the way i felt was i would talk about it with anyone but kept quiet because i didt want to listen to other people's suggestions who knew not about the disease. meant well but? did you try this? have you gone here? when your facing als you or at least i don't want to hear others suggestions.
 
Status
Not open for further replies.
Back
Top