feel terrible!

[brooksea]

I hate this!

My husband has become so angry! I think it is EL and the fact that he's losing his speech very rapidly now!

I can't tell you how difficult this is for me and my son, let alone how difficult it is for him.

That's all I can say for now. I am just so upset by this turn of events, as he used to be so positive!

Thank you for listening.

 

[shelly2612]

I am sorry Brooksea, none of us should have to go thru this. This changes each and every one of us. Keep your faith in God and it will all work out. He could be just having a bad day. God Bless You

 

[BarryG]

CJ,

We are here to listen. Please know that you and your family are not alone in this horrible mess. My wife and I got into an argument this morning mainly caused by my frustration at not being able to talk and my "WHY CAN'T YOU UNDERSTAND ME" attitude. Anyway things were said that had to be apologized for and now we are OK again. I really have to use my talkers more. It is very hard to be angry on a talking device because they have no emotion, you can put all the capital letters and exclamation marks that you want in and it all just comes out as dull as dishwater.

I have never been a really outgoing person so maybe it has been easier on me than for a "life of the party type" but even so the whole not being able to talk thing is absolutely the most difficult thing that I have had to go through in my life.

I can really empathize with what you and your husband are going through and I hope that he can get his positive attitude back. Just remind him that he has a family that loves him and that you will help him in any way that you can. Take care, we are all thinking of you,

Barry

 

[BethU]

CJ .... I'm so sorry about this development. It does sound like EL.

Have you tried ALS Guardian Angels for help in getting a compounding pharmacy to make up the meds he took in the clinical trial? I'm sure Stu would be willing to help. It is CRAZY that there is a med available ... already on the market! ... that corrects a very distressing ALS symptom, and those who need it can't get it!

This is surely distressing your husband as much as you and your son.

My post-trial prescription consists of quinidine "10-dm 30mg capsule." I thought there was a second ingredient, but it's not listed. This works great for me.

Hope you find a solution soon.

 

[joelc]

My heart goes out to you! My poor wife can certainly sympathize!

I just went through a really bad time with EL and can tell you there was NOTHING I could do to control my emotions! It was horrible for the both of us.

We tried several different meds before I settled on "Citalopram" 10mg/day. The others I tried had too many scary side affects. But these did the trick. I hope you can find something that works for him!

 

[mare]

Cj-

I'm so sorry you are going thru this right now. (your husband, you & your son)
I have no suggestions for any type of relief, since I have no experience with this.
But I do have prayers, which I will say for "y'all" to find some help with this situation!

Mare

 

[lynster]

CJ..
I do not have the right words for you, but you have my prayers and sympathy. It is not fun to feel the hurt from loved ones, especially since you know he does not mean them.

God bless,
Lynn

 

[thelma313]

CJ, our beautiful Southern Belle, I hope that your hubby is prescribed something that works better at controlling his EL. In the mean time, keep coming here to vent and share and know that we support you.

 

[LauraW]

Wow, I totally understand and can relate. My mom never cried and was always the listener and the advise giver. Now all she can do is "listen". She gets frustrated with the Dynavox and writting. Last week she was having a difficult time, was back in the hospital for three days and just could not stop crying. I hate this disease and get so angry myself and just want to scream. I am so sorry but know that you are not alone.

Laura

 

[lynster]

P.S. I love your avatar! I always thought Mona was pretty cool!
;D
Lynn

 

[Erica]

GJ,
I'm so sorry about this latest development of EL with your husband.
You got some good suggestions on this thread to follow.
I also think that Lexapro is a good drug for EL, it just takes a couple weeks to take effect.
I'll be thinking of you and your family, Cookie

 

[t34gib]

The drug is made up of 10 mg quinidine and 30 mg dextromethorphan. I am on my last bottle from the drug study and will have to have it made for me. Mayo will make a liquid but I need to find a local pharmacy to compound the capsules. I know that doing without causes me to go off the charts. Be patient and try to get him the meds.
NancyS

 

[brooksea]

Thank you all for your support!

My son's birthday party was today and he and I rushed around this morning to get things ready. Went to the store for last minute things, came back and hubby was finally up. He asked if a certain person had been invited and we said no, due to the fact he's a trouble maker. Well, he got angry! So this time I told him to calm down! We don't want to make you angry today. We are trying our hardest not to... So we will invite him (the little brat :roll

After that, the rest of the day has been surprisingly smooth.

I spoke with my son in depth this morning about not talking back, etc... The typical things a 9 year old will do and he is VERY stubborn. So, he had been trying hard also.

I guess addressing the fact that he is angry seems to work better than trying to address the topic at hand. Don't know I ain't no psychiatrist.

My husband later calmly told me, he felt it was a bad example to set by excluding a friend, even if he is a trouble maker. Good point, but being angry all the time is not a good example either for our son...tip toeing now...but I won't go there. :lol:

 

[sharonca]

I must say Lexapro worked for me starting the first day. I don't get angry but I cry all day without it Glad it turned into a better day. Happy birthday to your son!
Sharonca

 

[mare]

Cj-

There are no right or wrong answers. Trust your instincts; do what you think is right for your family. You are doing a terrific job!

Hope your son had a great party & a memorable birthday!