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New member
Apr 27, 2007
I am new to this site. I was looking for a support system for my husband and myself. My husband was diagnosed this past September with ALS, after 2 years of mis- diagnosis'. The whole disease is frustrating and such little known about what to expect with progression. It is my hope he will register to this site also and connect with some who may be going through a similar situation. I am looking forward to reaching out and talking to others.
Welcome jg and we hope we can help you and your husband with the coping process of this disease.
Hello JGHope. Glad you decided to join us. We will try our best for you both. There are some great folks on this forum and if you do a search from the tab on the top of this screen you will see that almmost no topic is off-limits. Visit as often as you like and keep us informed on how you are both doing. Cindy
Welcome Jghope

welcome to our little home. i have been coming here for several months now, and have learned more here than any 20 doctors could have told me. als is a rare disease, and unless you are actually being treated by an als specialist, you are not going to learn all you need to know.

in this forum, you can post any question you want to, and several patients with als or their caregiver will answer as best they can.

the moderator here, capt. al, tries and answers every question he can, and he welcomes every new member personally. he has been so very helpful to me.

i posted yesterday about my husband's pants not fitting and thanks to all who posted about his weight going to his waist and stomach due to no muscles in the chest area etc. i will go buy some new pants for him tomorrow - xlarge with just elastic waist.

also, to whomever reads this - do you caregivers experience anger from your als partner that comes from out of the blue over just nothing - ? i know the anger is not at us, but at the disease, but gosh, it is hard to take sometimes....

Hi Jackie- I think anger directed at the caregiver has been mentioned more than once. You're right that it is really anger at the disease and frustration over loss of independance but you still have to set limits on how much you will accept. Like I tell my family-just because I am sick doesn't mean I am allowed to also be a jerk! Cindy
Welcome to our GREAT FAMILY

Hi everyone:

Welcome to the forums JGHope, AS TO PALS ANGER IS CONCERNED, I do agree with Cindy, it is so much the hurt we as Caregivers have for our husband's that adding up their anger being thrown at us is so painful that even though we try to put ourselves in their shoes this doesn't wear the pain of being verbally attacked by them.

Jorge and I will be 36 yrs. married this next coming May 8th and I still can't understand the way he acts, since I am his only caregiver 24/7.

Have a very nice day everybody.

Paty-you're earning your angel's wings here on earth. You don't seserve mis-treatment, no matter how ill your husband is. The only time that sort of thing can be excused is if the patient is mentally ill and has lost his or her mind. Even then, caregivers set limits!

regards, Cindy
yes, my husband gets mad and takes it out on me but that's only because I'm the only one here and I understand that he's not mad at me, he just needs to vent his frustration. After a little time passes, we talk about where his anger is really coming from and move on.
CindyM said:
Paty-you're earning your angel's wings here on earth. You don't seserve mis-treatment, no matter how ill your husband is. The only time that sort of thing can be excused is if the patient is mentally ill and has lost his or her mind. Even then, caregivers set limits!

regards, Cindy

I disagree completely. I think your response is short sighted Cindy. The last thing a person with ALS needs is for their spouse to leave them because they don't feel like they're being treated respectfully. Anger has to be dealt with on both parts together.
Hi Zemble. Sorry I didn't see this post sooner. I think you misunderstood. I wasn't advocating anybody leave their spouse - unless for a few minutes and just in another room and then only if the anger is abusive. I was saying there is sometimes a reason to set some limits on the patient's anger-especially if that anger is mis-directed. But I understood Paty to be talking about more than an occasional outburst.

Hope this clear things up. Cindy
Wife with ALS

My wife was diagnosed with dementia last Dec. and ALS in Feb. I really doubt she'sll make it thru the year, and every time I see her, for her sake I hope she doesn't. Her daughter got a temp. guardianship and removed her from our home, so I only get to visit her now. She's unhappy being away from me, and I'm going thru hell being away from her. If she's going to die anyway, I want her to be able to die at home where she wants to be.

Is there a possibility that her husband also has dementia? my wife has accused me of so many things, cheating, etc., and I know it's not her talking, it's the disease. My wife knows I would never cheat, and yet to be accused of that is hard to take. It's not her fault, and it may not be anyone else's fault. Mike
You bring up a good point, Mike. Some people, when diagnosed with a terminal illness, handle it the way they have handled everything all their lives. A controlling person will have a hard time adjusting to needing help, an active person will struggle with loss of mobility, and so on. An angry person has a double burden, though, because that anger can spill over onto the people on whom their life depends.

It is a big challenge to help an angry person accept what they cannot change. It is also a big, but different challenge, to help a dementia patient who reacts with anger and paranoia. This disease is hard enough on all concerned. My heart goes out to people who have a double burden. Regards, Cindy
Same Boat

My husband was diagnosed finally this last Sept. We go to OSU/ALS in Ohio. We see Dr. Nash. My husband really likes him. He seems pretty forward. This too has been building for a year. We had gone to Cleveland Clinic, without getting too much info. We felt they treated us like idiots. We are both educated adults that want info. After a few months we switched to Columbus. I too am looking for a support/ person close to us going through the same stuff. Does your dr. feel that this will turn into ALS?
What's next

My husband has als for 2.5 yrs and he now is having trouble breathing swollowing and talking he has been cholking alot and complains about alot of salvia. My question is whats next ? I'm afraid he is going to choke uncontrolable and I won't know what to do. He is refusing any machine to help with breathing because he is afraid he won't be able to smoke his cigs.
Thanks to all
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