bulbar ALS progression?

[rms000]

Hi,

I am new to the forum. My mom who is 66 yrs old recently was ALS diagnosed with ALS. Her symptoms started last year with subtle speech changes and in the last 2-3 months we are noticing some minor difficulty with swallowing especially liquids. I know it is difficult to know how quickly or slowly she will progress but can someone share with me any stories or time frames of his or her loved ones with similar symptoms? I am really afraid for her and want to be there for her during these difficult times.

Thank you so much.

 

[BarryG]

Sorry about your mom, it is such an awful thing to have happen. I started slurring in July of 2007 and am still here thanks to my peg tube, suction machine, cough assist, bipap and many wonderful helpers. Can't eat, drink or talk but I wake up each day and try to keep smiling.

 

[Jason's Dream]

Sorry to hear about your mom. I'd recommend, if you want stories from her childhood, or videos of her talking to you or other siblings, to do it now. How her speech is now is the best it will ever be. It sounds like her progression is a slower progression. My husband was diagnosed a year ago tomorrow and has been battling it for 16 months. His speech is now gone. So, from my view point, do things with her while you can, video tape and have her write notes while she can. Those things are all to precious and treasures you'll be glad you did later on down the road.

*hugs*

 

[Jellycat]

Hi there rms,
I'm sorry that your mom has been diagnosed with this thing and that her symtoms have shown up in speech and swallow....though of course there's no good place for als to turn up. My mom is also a bulbar als onset and according to her neuro considered average progression. Her first slurring of speech started in May 09. She was diagnosed in Nov 09. By Dec 09 / Jan 10 she had lost her speech entirely and could not swallow anything unthickened. But you know, as Barry says, we're still here. Mum opted for the peg and I am very sure that without it she would not still be here. Perhaps this is something your mom might consider? Another great help is assistive technology, which can augment or take over when the voice is kaput.

No-one can tell you what your mother's progression will be like or what will happen next. I guess you can expect that over time (who knows how long) many or all of her muscles will be affected. I spent way too much time worrying about the future when the worst had already happened! So, I wish you many happy times together...for there will be many despite this disease. I am so glad you want to be there for her. She needs you just as you need her. If we can be of any help just shout

 

[Katie C]

If your mom is starting to have difficulty with liquids, it's time to start thickening them. Products such as thickit from Nestle's will thicken liquids without changing the flavor (honest to goodness, Glen even thickened his beer). You can even get it in packets you can throw in your purse for use at restaurants! Not worrying about choking can be a huge relief. Look into getting a good, high powered blender, such as a vitamix for pureeing. Even if your mom chooses to get a peg, she'll be able to enjoy more foods longer if you can puree them. Do what you need to to keep her weight up... swallowing issues can cause bulbar onset pals to lose weight even faster because they don't want to eat. Use gravies or heavy cream or half & half to puree. I agree with the advice to get equipment before you need it... sometimes it can take a while to get something, and one day you find yourself needing something you don't have yet.

Please come back and ask any other questions any time!

 

[rms000]

Thank you everyone for the suggestions and encouragements. It's very comforting to know that I can come here for support. It's still very hard bc I don't want her to suffer or be in any pain, but I'm trying to be strong for her... Thank you very much again.



Reshma (rms)

 

[Alexis]

My mom had a bulbar onset as well. I want to reiterate what others have already said. Get equipment before you need it! Especially peg tube. My mom waited to long and lost so much weight. It was terrible, and I believe being so malnurished actually made the ALS progress quicker. Looking back makes me sad, because everything we got for her ended up being too late, and she could barely even use them. Go EVERYWHERE with your mom while she can still walk. Go to movies, festivals, stores, ANYWHERE! Be with her as much as you can. I wish I could have had someone tell me what to expect when my mom was diagnosed in 2009. I was a freshman in college and I missed most of my mom's last functional years. You should also encourage your mom to write. My mom wrote how she was feelings, and just vented a lot in a few journals I found and read recently, and though they made me sad, when I read them I could hear her voice in my head. I don't want all this to make you sad, but I want you to know to make the absolute most out of whatever your mom can do while she can do it. Go on a vacation or visit relatives while she's still mobile. Take LOTS of pictures of her. Take pictures with her. Let her know you love her. I hope this helps you! I'll be thinking of you and your mom every day

 

[rms000]

Thank you, Alexis. I am so sorry about your mom and also that you are going through this at a young age. My sisters and I are taking our mom to Mexico in a few weeks. I am trying to spend every weekend with her and we are moving my parents closer to us.

Taking it one day at a time....

 

[3lli]

Look into getting a good, high powered blender, such as a vitamix for pureeing. Even if your mom chooses to get a peg, she'll be able to enjoy more foods longer if you can puree them.

Definitely get equipment before you need it...learned my lesson shortly after our diagnosis when I didn't have a portable suction machine.
I have found the absolute best equipment to pureeing food is the Ninja Master Prep Professional and believe me I have tried a bunch. It is inexpensive ($60) at Bed Bath and Beyond (online) and comes with 3 containers. I think the secret is the blades are stacked and super sharp. I have enough pureed a grilled beef tenderloin steak, mixed with mashed potatoes, cream, butter and the meat juices for my hubby. I was amazed at how creamy it all became. My hubby can't handle anything if it isn't a pudding consistency. He said it tasted like the real thing. Flavors are so important when your food looks like mush. It's a daily goal, to enjoy every little thing!

 

[Alexis]

That's so wonderful that you're going to Mexico with her. You'll have such wonderful memories The last trip we took with my mom was to our Aunt and Uncles lake house in Michigan. The photos are wonderful. My mom was always smiling. I'm so thankful we got to do it. I'm glad you will have that too. If you ever need someone to talk to you, I'm here!

 

[rms000]

We went to the Emory AlS center yesterday and confirmed that she has bulbar ALS. They are ordering a bipap machine for her to use at night. How do I comfort her? HOw can I help her deal with this awful, awful disease? mentally?


BTW, we did go to Mexico and had a blast!

 

[Jellycat]

So glad you had a blast in Mexico. That's great. Sorry to hear about her need for bipap, but on the upside she may well experience increased energy when she starts using it, at least for a while. How can you comfort her? You know her best so you are best able to answer that question, but I would think being there for her is huge. Showing her you love her & she's not alone. That's gold

 

[trfogey]

HOw can I help her deal with this awful, awful disease? mentally?

One suggestion is to stop thinking of it as an "awful, awful" disease. Sure, nobody wants to have it, but some folks live some very fruitful years with ALS.

Your mother's life, from this point forward, will be different than what you and she had expected it to be, but it need not be less fulfilling. Worry about keeping her life full of love and enjoyment so that there are no regrets at the end -- whenever it should come.

 

[rms000]

Thank you, trfogey. That really helps! You are right!

 

[brooksea]

My husband has been dealing with bulbar symptoms for almost 6 years. Weird disease! So, back to your original question, there is just no predicting what is going to happen!

Glad you went to Mexico. Good luck to y'all!