BULBAR ALS Questions

[southern lady]

Can't Complain...

because Bulbar ALS has left me speechless. Some times nothing comes out, which is probably a good thing. I form sentences in my mind, but they send every one scrambling to bring me a dry erase board or paper & pen, saying "I didn't get that. Write it down." & that gets old. My speech was what led me to nuerologist & diagnosed in March 05,now at the end of July 06, I'm waiting on an aumentative speech device.:

 

[MtPockets]

Thanks Marlo

I appreciate your comments. I think most of us would like to think we can face anything on our own and handle it well. Boy does ALS's prove that one wrong.

We all need help, emotionally, physically, and spiritually. Whether we will admit it or not.

Most of all I think we need to feel someone cares and loves us unconditionally.
We all have many questions.... I have found the only REAL answers I have found have come from God and his word.

I pray that God may bless protect and keep all of us as we face this together. We are not alone, God cares.
AL

 

[southern lady]

I have Bulbar ALS

Dx Mar o5, Slurred speech & concern of family & friends drove me to Neuro. (Who happens to be my nephew) MRI was clear--no sign of any TIA's--amazingly clear for someone my age. Then came EMG's & 1 week later I had my diagnosis. We never saw this one coming! Surely this is some type of cosmic joke. Now speech is gone; using erase boards & sick of having to write everything down. Waiting for a dynavox. Still eating w/o feeding tube, but is slow & sometimes more of a chore than pleasurable experience. Some slippage in my weight. Hands and arms weak & atrophied; now has started on my legs & I use wheelchair some. ALS is marching thru my body like Atila the Hun, & all the faith & prayer in the world hasn't been able to shut him down. A nuero in Denver did put me on med that helps control excessive laughter & crying that goes with this type. I am really addicted to this web site. I depend on you guys more then you could know. Please hang in there. I need your support. Mollye

 

[Al]

We're here for you and all the rest Mollye. AL.

 

[Bonnie Scahill]

My Mom has bulbar ALS and it began with slurred speach and weak tongue and trouble swallowing. Her MRI was normal. They did an EMG though and the results were not good. She also had twitching in her muscles. She has had this for 18 months now and cannot speak at all. As you said, some days we could understand her better than others. At night when her muscles tired it seemed harder to understand her. Along with not being able to speak she cannot move her hands or arms anymore. She has very little movement in her legs and feet. She cannot move or stand, but she can still sit. The thing with the bulbar is that it works from top to bottom, so the speech and eating are the first to go. She is also on a feeding tube. She can't take anything by mouth or she will choke. Good luck, I would definitley get the EMG. I hope this is not your case, it is a horrible disease and everyone suffers!

 

[Al]

Hi Bonnie. Welcome to the forum and thanks for sharing. If you need anything ie: info or support let us know. AL.

 

[grp_believes_in_God]

My Dad has bulbar. In about 12 to 14 months his speech has gone from normal to slurred to downright incomprehensible. Yet we loved one manage to figure him out. Doc says it will get worse (yeah right) Question to all. Does the bulbar patient become complete dumb (unable to speak) ? My dad has lost about 20 pounds in a year (mostly muscle).

 

[Blackbird_29]

Hi there,
I have PBP and it was a process of elimination. MRI, muscle test, breathing tests, blood tests all normal.
Started with poor speech after dental visit. Bit by bit I was unable to say some words. Now can still eat softish food, meat and veges cut up. Can't eat salad, biscuits and cakes or anything that I can't chew enough to swallow easily or with crumbs that go the wrong way. I can't drink water but milk, tomato juice or thickened juices are good. I think my tongue is almost dead. I take Rilutek. I have coughing /choking fits when things go wrong but when I can get my breath againg all is ok.
I have a talking machine and I use a white board and pen so I can communicate ok.
The rest of me is fine. Aim to travel lots before limbs start to go.
Love to others with PBP and ALS.
Merle (Kiwi from New Zealand):-D

 

[slkfocus]

pbp or als

Hi:
My symptoms started overnight in Feb of this year. One day i could talk, next slurred. Two weeks later I age a sandwich one day and choked the next. Primary doctor looked at me 3 times and said he saw nothing. My arthritis doctor had ordered blood tests and my CK level was 1595 which he was concerned about. Primary sent me to ENT who put a tube down my throat and said I had a immobile soft palate, when asked how that happened he said "don't know". Saw primary again and he sent me to nuerologist who ran tests like blood and swallowing test. Doctor at hospital said I needed a feeding tube immediately (I still don't). This was in April. Nuero sent me to big Phila hospital.
I also had EMG and brain mri and cervical mri. Mri's came back showing no problems. EmG he said showed concerns of nueron muscular disease.
New doctor at hospital gave me another brain mri with dye and she gave me another emg. She said she was expecting worse than what she read from first emg and the mri showed nothing although MS was ruled out.
Doctor is saying PBP than saying ALS. I am eating better but have lost 60 pounds since February. I am working real hard now on eating at least 2000 calories and protein of at least 90. I am considering feeding tube though. I have learned that I can eat the heavier foods and foods that don't crumble. Drinking I drink alot of shakes mostly sherbert shakes.
My doctor refused to give me any kind of time line. I have not heard of the 18 months for bulbar. I am hoping for at least a year or so before my limbs go. I am able to walk and write and carry things for my job.
Once people are diagnosed how long do you continue working. I want to leave my job while I can still do things and spend quality time with my grandchildren and kids.
Does anybody take vitamins and if so what should I be looking at?
As far as my speech in the beginning I slurred alot but now I can talk clear enough to use the phone to talk to lawyers and doctors. Sometimes at night when tired I get a little slurry but I talk slow and try not to "yell" which seems to help. Every week I find I can eat something I couldn't a week before (like cake, pizza). I usually need to drink after a eat a bite but 2 months ago I would choke on that.
I am so confused by this considering my symptoms hit me fast and hard. I am presuming the diagnosed is because of my emg because everything else is normal. Actually my CK level is down to 600 now. Did anyone else have elavated CK level when diagnosed?
Thanks for answering my questions. This site has been great (except for reading the 18 months life span)
Sharon

 

[Al]

18 months is not the end of the line for everyone. There are people here that have had bulbar ALS or PBP for 4 years or more and while they do not live a life like the next door neighbor they still are functional and I am sure you will hear from them. Don't give up hope yet. AL.

 

[MtPockets]

Hi Sharon Welcome to the forum

I also had a high CK level when diagnosed, mine ran as high as 5000 at one time, now averages about 800 to 1000. I don't worry about it anymore. You asked about vitamins. I have been experimenting on myself with B-12 injections a few times a week to try to help with the fatigue levels. Been about 3 weeks now and seems to help for awhile but then fades away. Doctor told me it might help so thought I'd try it. The burning from the shots bothers me so I think I may discontinue them. I'm waiting a few more days before I decide to see if it takes awhile to get into my system. I also am on Rilutek 2 times a day.
Well, best of luck, just know you are not alone in oyur fight against this terrible disease.
God Bless,
Big AL

 

[patricia1]

I started in 1999 with slugged speech and no other symptoms until last year now my arms are weak and I quit my job in sept 2005 I was able to work with no problem with energy only speech problems so I am lucky its slow However I think it is starting to speed up in my arms I choke on water and I am careful with combination foods as solid and liquid together no weight loss yet and I still dont know the variance of als I have . Every test is neg except my emg last month was the first to show weakness in my upper arms which I knew without a test, I have been to 5 different neurologist in 7 years and finally Dr jeffrey rothstein told me in 2004 Ill probably have als, Now I go to philly and work with a team of professonals and see them every two months No cure No test No meds for this horrible disease>I know I shouldnt complain because I am still here after 7 years at 60 years old. Has anyone had problems with smells I cant take smells like lemons vicks gasoline mints purfumes it takes my breath away. If anyone has that please reply thanks pat

 

[Al]

My wife got a new bathroom freshener and I said it smelled like cat urine. It would make me nauseous just to go in the bathroom to wash up. Finally we got rid of them. The dog got sprayed by a skunk and after 2 baths by a groomer and 2 by us he still has a bit of odor to him. When he sits near me the smell gives me a headache. I guess you could say I'm more sensitive to smells.

 

[MtPockets]

That could only happen to you AL

Boy, your just a ton of good luck, huh. Poor old dog gets sprayed and then washed so many times.

Reminds me of an old song down south, " If it weren't for bad luck I'd have no luck at all". The rest is too depressing to sing to you, your such a nice man.

I wonder if we smell as bad to a dog as a dog does to us?

My strange sensation since ALS has been what I crave and like to eat now has changed. I use to love junk food, candy bars, lots of sugar. Now I just lost my cravings for them, weird how this disease affects each of us so differently. I suddenly love oranges, which I didn't before.

P.S. AL how you get that thingy not to come up? </img>, I always have to go to edit to get rid of it when put smiley at bottom?

God Bless
Big AL

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[Al]

Hey Big Al. When you are doing your post use the icons at the bottom rather than the smiley's at the side of the page and I think that should fix it. I usually don't use them so am just guessing here. I don't use advanced or Post Reply. I just use the little paper and pen icon at the bottom right side of other peoples posts and then hit post quick reply at the bottom. AL.