Question on bulbar symptoms

[lorid]

This is my first post, and I have found this forum very informative. My husband was diagnosed Monday with ALS. He has had slurred speech since Dec 07, and went to the neuro in January. We tried a couple of things, did a few tests, and on June 4 he said he thought it may be ALS. I remember this date b/c it was our wedding anniversary, 14 years. He referred us to the MDA clinic at Southwestern Medical Center in Dallas, and they did some bloodwork and an EMG in July. They confirmed the diagnosis this week.

My question is regarding possible progression. The doctor said that b/c his symptoms are still primarily UMN/bulbar, he thinks it will progress more slowly, and didn't really want to commit to any specific prognosis. The EMG did confirm LMN involvement, but he doesn't have any problems at the moment. We do see some small facsic's in his legs, and he has fallen a few times. The falls are hard to attribute to anything b/c of the circumstances of them, such as he stepped in a hole at the lake and sprained his ankle.
Any examples of anyone whose symptoms started this way?

I know I will get a lot of help here in the coming months/years, thanks for any ideas.

Also, a strange coincidence: Our primary care doctor who I have known since high school was diagnosed approx 1 year ago with bulbar onset. Our neuro (that he referred us to) said that my husband presents just as our dr did. I don't even want to consider my husband could decline as fast as my doctor did, looking for some hope.

 

[trying to stay positive]

Hi Lorid,

I am so sorry to hear of your husband's DX. You are right that you will receive alot of help and support here. The people on this forum are amazing and compassionate. My husband was DX with limb onset 8/07, with symptoms for about 2 & 1/2 years prior. If there is one thing that I know about ALS, it is that no two people progress the same. Your husband's progression may be very different from your PCP's. Please be sure to register with your MDA & local ALSA. Hang in there. We are here for you.

Linda

 

[lorid]

Thanks

Thank you Linda, it is terrible to meet this way. I know everyone is different with this, and I hope he is a slowpoke. We have 2 kids, boy 6 and girl 11.

We are fortunate to live close to an MDA clinic, and met the rep yesterday. I know we are in the best hands and everyone is praying.

 

[brooksea]

Hey Lorid,

Welcome to the forum!

Linda is right, every PALS is different. My husband was diagnosed 09/06 with Bulbar/limb onset. He is still walking and talking (although hard to understand at times). Arms are atrophied and he needs help with opening ziploc bags and screw tops, etc... but he is doing pretty well. He uses a BiPap at night. Fatigue is a major issue, but he needs to pace himself.

Hopefully your husband will progress slowly. Sorry for the diagnosed.

 

[lorid]

Thanks CJ, sounds like your husband has done fairly well. We will just pray and take it a day at a time. It is hard not knowing what will happen. But he still works and everyone there has been great.

I look forward to getting to know everyone. It will be nice to have this support tool.

 

[cariad]

Hi Lorid,
sorry to hear about your husband's diagnosis. My mam was diagnosed in may 08. She also has fronto temporal dementia (a type which is sometimes associated with mnd). The FTD started in oct 06 and that's when I first noticed slurred speech. The EMG showed both upper and lower involvement, although we can't 'see' any lower symptoms.
My mam's symptoms are mostly bulbar . I think the slurred speech and ftd were all part of it.
The situation now is that mam is on a pureed diet and chokes a lot. Her speech output is minimal and what she does say is garbled/difficult to understand. Cognitively, she is now severely impaired. I've asked the Neuro to give a rough prognosis but he's reluctant to. He just says no-one knows, everyone is different. But what he did say is that its not PBP (because that is confined to the bulbar area).
Sorry to paint such a bleak view, but that's how it is for my mam.
Regards, Berni

 

[lorid]

Trying to be realistic

Thanks for the information cariad. My husband just got home from work and was talking about what a hard time he is having mentally doing his job. I seriously think that it is getting more and more serious. Also after he changed to shorts, he complained of a muscle cramp in his leg and I asked him if that happenned frequently. He said yeah. I also noticed fasics that seem bigger than I had noticed before.

I just really think the dr was't being completely up front when he said he thought it would progress slower. Do you think they sometimes try to just let the initial diagnosis sink in before they try to lay any major bad news on you?
And what is the doctors idea of slow progression? It just started in Nov/Dec, and he already is hard to understand and chokes. If the LMN are involved per the EMG and we can see tiny fascics on his legs (bigger today), how much longer could it possibly be until he does have trouble walking?
I already worry about things like will he fall on the stairs, is that cough a choke and do I need to do anything, should I just talk for him when I am around?
He pretty much does just let me talk for him when he is having trouble – which is most of the time.

Monty’s breathing is at 75-78%, it hasn’t gotten worse since the appt in July, but the fact that he isn’t where a normal person would be bothers me. And what about the times he just stares at you when you ask him something? And him having a lot of trouble processing things mentally at work? Soooo many questions. He is bulbar onset, and I know that progresses faster, but why does the dr think it won’t?

Sorry guys, I am just kinda freakin out today.

 

[brendapals]

hey lorid,

Your hubby's situation sounds close to mine. I started with slurred speech, and have pretty much stayed at that, back in feb 08. Our boys are 17,14 and 7. It is soooooo hard to deal with some things about this disease, but you are in the right place for support and friendship!

I was officially diagnosed on 6/3/08-the day before your anniversary! It has now been 2 months, I still talk with a definite southern accent AND slur! I haven't lost 80 pounds or nothin'- I am still eating, just taking smaller bites. I started the Rilutek and lithium combo on 7/4/08. My neuro rxd the lithium for off label use since he is not in the study yet. He hopes to be in several studies in the fall.

ALS makes us look at life a little differently. I am working 4 days a week as a nurse in a rheumatology practice, starting IV's most of the time. Our boys are VERY active in sports, so I'm gone every night to a sporting event. My house isn't as clean as it used to be, but my hubby and my boys are just plain happy to have me home at night, after ball practice, or ballgames, or a run to the grocery! I also will start back to college in another week to finish my bachelor's in nursing. I only have 2 classes left, so I'm going for it.

Like I said, this is a great bunch on this forum, talk to us all you want! I will try to pm you later tonight!

Keep the faith,
brenda

 

[BethU]

I just really think the dr was't being completely up front when he said he thought it would progress slower. Do you think they sometimes try to just let the initial diagnosis sink in before they try to lay any major bad news on you?
And what is the doctors idea of slow progression? And what about the times he just stares at you when you ask him something? And him having a lot of trouble processing things mentally at work? Soooo many questions. He is bulbar onset, and I know that progresses faster, but why does the dr think it won’t?
Sorry guys, I am just kinda freakin out today.

Hi, Lorid ... I can only speak from my limited experience as a bulbar onset type, but my impression is that doctors don't say things like "slower progression" just to soften the blow. Your doctor probably made that statement based on the test results and an evaluation of your husband's symptoms.

It would be great if you could contact the doctor or his office, and ask the kind of questions you don't think of when they dump this information on you. If you can't do that, start writing down questions you want to ask at the next appointment.

About your husband's having trouble concentrating at work ... this diagnosed is a HUGE piece of information to deal with! I'm sure your husband is still trying to absorb it all. It is very difficult to concentrate on things like work or everyday conversations when you've got this on your mind!

I'm so sorry for your husband's diagnosed, but am glad you found this forum.
Hang in there!
BethU

 

[lorid]

Thanks

BethU-
Yes, I know he is trying to comprehend this. I guess I shouldn't jump to conclusions,but I just don't know what to think. That is good that the doctors don't try to soften the blow like that, I sure hope it takes its time. The concentrating at work has been going on, and seems to be more of a problem all the time. I just don't know, I am not there.
I am just very scared. I can only imagine how he must feel. I am going to direct him here so he can have support and ask questions too.

Brenda-
You sound very strong. I am glad you are going to pursue your degree. You go!
My daughter is going to play ball this fall. We usually do cheerleading in the fall, but this year she wanted to play ball. It sounds like our cases are alike. I would love to hear from you.

Thanks everyone, I am grateful for the information, and wish you all the best!

 

[brendapals]

thanks Lori,

I'm not sure if I'm strong, or just plain crazy! Someone asked me today what I was going to be when I grew up, and I told them I planned on never growing up! I suppose we do whatever works at the moment.

My family and I are still praying for a miracle, and that's what I usually tell our friends when they realize something isn't quite right. I tell them that after, and only after, I let them know I haven't been out in the bars-you know, the slurred speech and all! haha

That's it for my little funny of the day!
Keep the faith,
brenda

 

[kelly]

Hi Lori,
Gosh..your post reminds me of our situation. My husband 41 also started with slurring of speech. Long road of tests...and neurologists. He was officially diagnosed with bulbar als last year. He is still able to walk with a walker short distances. Uses wheelchair most of the time. He stopped working last June...what a road it has been. He is still able to eat..but I have to feed him because his hands have limited use. We still have lots of love and laughter in our home...try to make the best out of this crazy situation. Not to say we do not have lots of frustration and tears. We have two boys 4 and 6. Feel free to write..or ask any questions any time. Fondly, KR

 

[lorid]

Wow.

Hey, it is so nice to hear from others at different stages. It does sound like ours are alot alike Kelly. Well, we will see what happens. Your kids are so young, how are they?
I just hate this, especially for what they will have to go thru. It will be a life defining thing. God, give me the strength to handle this right.
One thing I want to ask, our 11 yr old daughter knows what her dad has, our 6 yr old boy doesn't get it (we haven't spent much time trying to make him get it either). When do you think I should start thinking about counseling for her? I think we should all go, but I am most worried about her, and my husband. She is very sensitive and I know he is having a hard time. I promise I am much more positive here at home, I have just had a rough week, ya think?

I will be strong and patient and .....busy! Deep breath.


Brenda, thanks for the humor! I have laughed and cried reading posts on this sight!

 

[georgia]

My husband started having trouble with speech problems now and then in 04 then in Jan 05 Docs started looking for causes till 2/07 told us ALS. He has a speech device for when but for now he just repeats. Still walking and arms shows some wasting no bipap . Doc say he is the exception not the rule they just don't know. Enjoy and prepare the best you can. The grandkids (6 & 8) where here this week and said we don't remember what grandpa used to sound like before this disease really neither do I anymore. We gave my dau the movie "SO Much So Fast" to watch and she showed clips of it to the kids saying this is what grandpa has but his may not go exactly like this. We have some older w/c so they know that might be in the future. I think they react to how we react. Tell them then go on with life the best normal as you can. We are adding a bath and bedroom more useful.

 

[brendapals]

Hey Kelly and Lori,

So good to hear from you both. And yes, humor helps a lot. It is much easier to smile than frown!

As far as talking to the kids, we told our boys together. They are 17, 14 and 7. Our 7 yr old doesn't really understand what we're talking about. However, he knows all about the ALS walk coming up in Sept. Sometimes the less we talk about it, the better. But the older two cried for a couple of days every time they looked at me, and held my hand every time we went anywhere. They have settled in now after 2 months. And, yes, I still nag them about cleaning their room, taking out the trash, etc....

I am thankful that I am still walking and working 4 days a week. But I know the time will come when I can't-I just don't want to rush it! The planets have to be in line and the national debt handled before I can quit working!

Happy Friday to all-
Keep the faith,
brenda