bulbar ALS

[Denisemarie123]

Good afternoon everyone!
My husband has just been diagnosed with probable bulbar ALS after a year of doctor's visits, testing, etc. Grandfather and aunt died of ALS. All tests are negative but he has progressive slurred, hoarse speech. No limb involvement as of yet. Is there a timeline anyone can share of their own experiences with bulbar ALS and when it moved to the limbs?

 

[Nikki J]

I am sorry you had to find us

Everyone is different. Really. Bulbar is generally thought to be quicker than limb but we have slow progressing bulbar onset people here and I know some elsewhere.

i hope you had had 2 neuromuscular opinions ? You are in a good location to get those

what tests were negative? Genetic tests for FALS genes do you mean?

 

[rmt]

My husband is at almost 2.5 years of probably bulbar ALS/PLS, still with only speech and swallowing issues so far (no limb involvement). So far his EMGs have all be normal, which is why we are still in PLS or ALS being possible.

Has your husband had an EMG? We've had neuromuscular specialists tell us about people who are bulbar only for 6 years or more, so it is possible, though pretty rare I think.

 

[nona]

As Nikki said, every case is different. I'm one of those slow progression bulbar cases. I worked for two years after diagnosis and only stopped because of the energy required. I'm at six years since onset and can still move my legs.

 

[Firefighter58]

Hi there folks, I have bulbar ALS and still walk with the aid of a walker, still eat in a normal way, cannot talk but can still drink in a normal way. I suffer no pain but have some stiffness of my legs. Like Nikki said everyone is different.
Al

 

[jethro]

it started with bulbar, pause, spread on limbs, now i have alltogether.

to many pals, so no chance for such a variety (everyone is a different). everyone lives differently, that' crucial. ok, no philosophy anymore...

 

[WifeofKev]

Thanks to all of you chiming in on this thread. My husband, with no history of ALS in his family, has just had an initial diagnosis of bulbar, and I've been wondering the same as the OP, too. My husband just turned 50 and after 26 years working in his union, we just found out that until he hits 55 he's not eligible for any disability through the union and if he passes before his 55th birthday, I won't receive any spousal benefits, either.

So while we hate thinking about the idea of trying to gauge his progression and death, we are doing just that. Thanks for the reports that we may very well have many years left together -- not the same, just different than it was.

 

[Carrickmacross]

I was diagnosed with bulbar onset April 2002. It took 7 months to figure it out. I played tennis ( my partner called out the score) through 2004 when I couldn’t turn my wrists. I continued to rollerblade 6 mile a day to the end of 04 then I walked the 6 miles until 05. Then I used a cane and after went to walker and scooter. Then in 08 I got a power chair and an equipped van. I could still stand up to the sink and use the toilet and could dress myself until about 2012. I needed help showering. By 2015 I couldn’t move my legs and couldn’t get in and out of bed so I’ve been sleeping in my chair (I’m in my third …Medicare will pay 80% for a new chair every 5 years. I’ve lived alone for 18 years with ALS and have 2 girls every day for 2-3 hrs.

 

[lgelb]

Welcome, Denise and Carrick. You have had quite the odyssey, Carrick -- look forward to hearing more about how you have adapted to progression.

Best,
Laurie

 

[jethro]

@carrick, what about voice, hands, breathing an feeding? never heard about such a slow progression.

 

[rmt]

@Carrickmacross Do you have bulbar ALS or PLS? Your slow progression is wonderful!

 

[Sonne]

Hi there- I haven't been on the site for years now. First thought I had bulbar ALS in 2010 & 2011, but Sunnybrook hospital insisted that I would be on my death bed if I had it. Two years ago I was diagnosed with probable ALS and now almost 10 years from the onset I'm diagnosed with definite ALS. I'm 67, am a widow and I have 2 sons. I've had all the tests and never have confirmed or negated the diagnose. It has only been made according to my progressive weakness.

I don't know if it's genetic in my case, but it doesn't really matter does it. It is what it is and all I can do is to do my best each day. Personally I'm a big believer of pollution and toxic environments. Growing up my sisters and I ran and rolled in the long grass of sprayed country roadside ditches. In the 1960's I use to spray our lawn with DDT and other agents. Didn't know any better then not sure that we do now? All the tests they do can only tell what you don't have. I know that once neurological damage is done there's nothing to do but to keep kicking the can for as long as one can..

I use my power chair in the community but still use my walker in my apartment. The only thing I can contribute to my lengthy progression is that I'm stubborn as hell and keep myself as busy as I can. I still do my own houseworker, which on some days is very challenging, change my bedding and I keep using my hands as much as I can. I write, paint and sew all which keep my mind focused and kind of alert. I work in bits, 5 minutes doing something then rest and then onto something else. Yes I'm constantly dropping and spilling things but I'm not going to sit in my chair each day waiting to die as only God knows when that might happen. I'm not ready yet so I keep myself busy. I don't get a lot of muscle pain anymore but am on a low does of morphine because of arthritis. I get a lot of strange nerve pain in my feet and legs, mostly in the evening, sometimes quite painful. I have a lot of trouble swallowing and with my speech. I've learned a few tricks of breathing and coughing when I do feel something is getting stuck in my throat. I get short of breath and can barely blow anything out of my nose. I can't get the force needed, so I mop up the best I can. I make sure my nose is as clear as I can get it before going to sleep and use a bipape during the night. My blood oxygen is between 86 & 92. My doctor won't give my oxygen until it drops to 82 to 76 as one can get too much carbon-dioxide in one's blood.

So what can we do. It is what it is and we can only do our best. Some days I do just sit all day but the next morning I start all over again. Try not to let the disease define who you are and what you can do. I hope this might be helpful . Bolette

 

[2blue1pink]

My dad was diagnosed with bulbar onset a year ago at 78. At the time he only had a slight slurring of speech. He still golfed several days a week and worked a part time job. By February/March about 5 months later, he could barley talk and eating was very difficult. In June he had a feeding tube. As of now, a year later, he cannot swallow at all, cannot talk, and his head droops so much his chin is on his chest all the time. It has progressed very quickly. He still has limb use but I honestly don't think he will ever progress to that point, I am afraid of pneumonia taking him before that happens. We tried to get him to sell his house a year ago after the diagnosis, but he said he was fine. We are now dealing with house showings while he is on several machines, and its hard for him to move around. We never should have waited. I would suggest, do not wait. Get things in order now. Everyone progresses different. But better to be ready when it does progress. This is awful. I'm so sorry.

 

[lgelb]

2b1p, I'm sorry about your dad. Has he tried a cervical collar with foam and/or plastic? There are many kinds.

 

[Kristina1]

I was dx bulbar onset ALS in 3/2017. Limb involvement occurred within weeks in my hand. Presently (3.5 yrs later) my speech is indecipherable to most, trouble swallowing,severely limited use of hands and arms. I cannot walk and use PWC. I can stand for few secs with support.