I am new here

[patedebr]

My husband has been diagnosed with ALS. The symptoms started about 2 years ago but at the time he was very sick with TB and not diagnosed with the TB until July 2008. We spent two weeks in a hospital about 4 hours from home because most of the doctors here are pretty useless. He finished his treatment for TB in May of this year. It was a long struggle.
Then I noticed the twitching in his left arm had moved to the right arm. Back to the doctor only this time a new doctor and new insurance. Off to the neurologist within a month and the rest is history. We have had two/three second opinions. The symptoms are becoming more noticable. Cramps in his has, twitching in his mouth, and sever weakness in his left leg. I thought the ALS was moving faster but was told that it was just reaching what they call critical points. In other words it was already there and working undercover....
Both my husband and I are recovering addicts. Me a previous meth head have been clean for 11 years. My husband a heroin addict clean since 2000. I am worried that he will use pain pills to deal with the ALS. He has already been prescribed some because he told the doc that he has pain. He is not taking them as prescribed but doubling up on then...I often wonder if I would do the same. I am not the one dying...I am not the one losing my speech...I the one that is watching and wanting to help so badly and not knowing which way to turn. I try not too argue about the pills...I don't know how to handle this.....

 

[brooksea]

Well, it sounds like you both have been through a lot! I'm very sorry your husband has been diagnosed with ALS. Is he going to an ALS Clinic and have y'all registered with the ALS Association? It is a difficult road to travel when first told you or a loved one has ALS. I hope you both will be able to move on to acceptance, but it may take you a while. You may find support from the ALS Association and you should get advice from your nearest ALS Clinic (social worker or neurologist) if you believe he is having difficulty with the medication.

Please feel free to come to this forum for support. There are lots of caring people here.

 

[rowland's wife]

I know how you feel my husband also doubles on his pain meds, I wonder is it to cope with als. I am guessing your husband has bulbar ALS, since you said he is losing his speech, my husband is also losing his speech,he was diagnosed in sept. 2008,some days I can not understand what he says it is very frustrating. I often wonder how I would deal with it to, he can barely walk anymore can't feed his self we use wheelchair most of time. I know it is very hard for me to deal with seeing him that way,I try my best to be strong but somedays it takes all the strength I got just to get out of bed.

 

[judylyne]

First I want to congratulate you and your husband for your success in beating your addiction. I don't know if your husband has ftd but if he does he might not be able to take his own meds. My husband overdosed on his meds accidently so i had to take over his meds. Judy

 

[patedebr]

First I want to congratulate you and your husband for your success in beating your addiction. I don't know if your husband has ftd but if he does he might not be able to take his own meds. My husband overdosed on his meds accidently so i had to take over his meds. Judy

I am sorry to here about your husband. I want to take over the meds but at this point he won't let me. I worry that he will OD.

 

[patedebr]

I think my husband uses the pain pills to cope. I am not sure about the Bulbar ALS. The symptoms began in his left arm. I've been told the Bulbar begins with speech, choking, etc...although his speech is affected he can still be understood my most people. He walking is alright but the doc wants him evaluated for a brace on his left leg as it has buckled a couple of times. I wonder if your husbands behavior changes when he overdoes his medications? Jeff's does and it drives me nuts. I try so hard to understand but that is impossible. Sometimes I just want to sit and cry because I don't know how to help him deal with this and his way of dealing is avoiding. Maybe I would do the same. Thank you all for your support...I really is helpful to know that there are others who understand. May you all be blessed with love and peace you your lives.

 

[rowland's wife]

my husband also had pain in his right arm thats what we went to the dr for that was in May 2008, in July his speech started slurring,its been hard to understand him for a long time now, the pain medicine also makes it worse, yes his mood changes, sometimes I think the medicine makes him more depressed,this is such a hard thing to deal with,as he often tells me he wants to hurry up and die so he doesn's have to suffer any more,and that makes me sad this disease makes me angry it is so horrible. He can no longer do anything for his self, he hates that so do I. I think I would feel the same way if it was me with ALS, but I often wonder if he thinks of how I feel watching my husband of 10 years basicaly wither away to the point of death I know one day it will happen but it doesn't make it any easier,I worry about our son he is 8 I still don't have the heart to tell him that one day his daddy will go to heaven, I tell him that maybe one day they will find something to help make him better, thats what I hope for. It makes it hard to keep a positive out look on things when my husband has such a negative one. I wish he would put up more of a fight take better care of his body try to eat better,but he doesn't I read the forums alot most of the people have a positive outlook on things, I think it would help him if he put up a fight.he has been sleeping alot more lately, i don't know if its the ALS or depression which he takes medicine for

 

[patedebr]

Jeff is also negative about this and I think the same thing you do. Would I feel any different? He says he is going to remain strong for me and our kids and our grand kids but I don't think he knows how. I wonder if he finds it easier to just give up. He doesn't eat right. Although he is still in the early stages he doesn't go anywhere or doing anything anymore. He is isolating himself. He is also on medication for depression, high blood pressure, and the pain meds. I often worry that I will come home from work to find he has stroked out. I try to understand, but I know I can't. What I do know is taking pain meds to deal with the ALS is not going to make matters any easier. especially when he takes way more than prescribed. He will run out well before he can get them renewed. Then what. This is so hard for everyone.

 

[Tich1]

Just popped in to say hi to the new people , hello patedebr , rowland's wife , and judylyne , sorry you had to seek us out , but glad you joinrd , there are some lovely senior members here with a fountain of helpful knowledge , and all of the PALS for support xx