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ambulanceman

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CALS
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Brighton
My Mother-in-law has been suffering from Bulbar ALS since January of 2011. Symptoms started slow with a bit of slurred speech and have progressed to the point where she is now having significant difficulty eating due to salivation and inability to chew. In addition we have noticed a loss of control in her neck muscles and she struggles to hold up her head. A few weeks ago she started developing pain in her joints and is beginning to have significant balance issues. On top of that she struggles with sleep or getting quality sleep.

My wife tries to take her to the ALS clinic but she is now all but refusing to go and has refused any measures which would help her (feeding tube, c-pap and so on). I guess what I am saying is we're at a loss what to do or how to help her or how to convince her to seek the help that she needs. Neither my wife or I are naive (we both have backgrounds in emergency medicine as family care) and we know what is coming and are prepared to provide what care we can until it is beyond our capabilities. Any advice or insight you would have would be welcome.
 
How old is your MIL? My mom, 86 years old, is also bulbar. The peg tube has made a world of difference for her. Eating and swallowing is no longer such an ordeal for her because all of her nutrition goes thru the tube. She is still able to eat pureed foods and ice cream. She has had balance issues for a long time, and she now uses a walker with wheels. The breathing has not yet been affected (at least not that I can tell). Trust me when I say that I am dreading what's to come, but for right now she is still strong. The peg really has been great for us. Good Luck.
 
Hello,

I am sorry about your mother-in-law having this disease but I am glad you found this forum because it's a wealth of information and there are many wonderful people here.

I also was diagnosed with Bulbar onset back in Dec. 2011. All started as a slurred speech, chocking occasionally when drinking thin liquids, and drooling.

I am wondering why wouldn't she want the PEG-tube as it would be really helpful for her nutritional needs if she's having problems with her swallowing cause she could risk losing weight and that would speed up the disease. But, the PEG-tube procedure should only be done if her pulmonary function (FVC) hasn't dropped below 50%. She shouldn't refuse to go to the ALS Clinic because the Clinic has a team of experts (P.T., O.T., speech therapist, Pulmonologist, Nurses, etc.) that can help her through this disease. They can even give her prescriptions to help her control the excess saliva which makes difficult for her to eat without chocking.

She definitely should go to the Clinic so they can assess if there is weakness in the muscles of her neck and can recommend her a neck brace to keep her head up. You guys can also contact your Local Chapter of the ALS Association (ALSA). They can send a representative to your home to assess what are the needs of your mother-in-law and they can supply equipment such as wheelchairs (if she can no longer walk safely), etc.

But ultimately, the decision to stand up and fight this disease lies on her. You guys try to do your best and explain her that the people at the Clinic are there to help her through this disease, to make her life easier.

I wish I could be of more help for you.


Regards,


NH
 
Last edited:
I posted a reply to you but it was sent straight to "Moderator".
It should show up sometime later, when he approves it.

NH
 
Hi--My mother has bulbar ALS, in addition to frontotemporal dementia. Because of the dementia and because of her clear entreaties over the years, there is no feeding tube, and won't be any other life-prolonging measures.

I actually just posted a thread a few days ago asking for insight from people who have been down the bulbar ALS route with a loved one when there was no feeding tube, but unfortunately didn't get much response. (Refusing a PEG is definitely a minority decision on this board.)

My mother's throat muscles are extremely weak, and she can only have well-pureed foods (sweet and slippery work best) and thickened liquids. She gets a lot of Ensure Plus shakes, often blended with bananas or other fruit for more calories. I also made pudding with a vanilla Ensure Plus base, then bananas and diced peaches in syrup, tossed into a blender with ThickIt added. Lots of calories.

Our biggest concerns are keeping her weight loss as slow as possible (the doctor is impressed that it's a little less than a pound a week, given her throat issues), keeping her hydrated, and watching for any signs that she may be coming down with aspiration pneumonia, since she silently aspirates any thin liquids. But she is still very active (no limb involvement yet) and her lungs are very strong. She's starting to drool more and more, especially because her mouth is now always open.

Because there won't be a feeding tube, and because there's so little ALS involvement elsewhere, we're not taking her to an ALS clinic anymore. They kind of threw their hands up once we told them there'd be no PEG. And she can't follow instructions anyway.

It's very painful to watch, and the choking incidents when they happen are so scary, but slow patient feedings of the right consistencies of foods can go a long way. Has your MIL had a swallowing study done? They can help you get a good sense for what your MIL should and shouldn't be eating.

I'm so sorry your MIL and your family are going through this.
 
My late husband also had the FTD/bulbar combo. I would say the important thing is to respect your MIL's wishes. If she was clear that she wanted no PEG, then that is her choice to make. Get a good blender. Stock up on cream and gravy to add moisture and calories to the foods you're pureeing. Stock up on Thickit... honest to goodness Glen put it in his beer and was able to enjoy it until just a few days before he died. If MIL is showing any behavioral changes, I would suggest getting an FTD workup done, as proper care for that will make both her life and yours much more pleasant for a longer period of time. And I agree... if she hasn't had a swallow study done, I would insist on that, you'll get a better picture of how far along in the process she is. Our speech pathologist (who did the swallow study) was one of our greatest allies.
 
Hi ambulanceman,*
I can only imagine how tough this is for you and your wife. I really had to think long and hard after reading your post. I think that if were in your shoes, I would simply continue to accommodate my MIL's wishes, focus on making her comfortable and reducing stress. I would help her to indulge in the things she wants to do (watching tv, a movie, reminiscing, laughing, hand-feet massage, etc). I would also remind her that she is still in control, that she is loved, that she can count on you to support her. Your are probably already doing this... Best wishes.
 
What other's have said. Respect her wishes. Something I caught on your post is that PALS shouldn't use BiPAPS and NOT CPAPS. I'm very sorry all of you are going through this. If your mum is of sound mind, get a personal directive in place. Thinking of you.
 
I want to thank everyone for their response and their advice. You have given us some great information and we truly appreciate you taking the time to respond as you have. Hopefully we can make some head way with Mom but if this weekend was any indication then I think we have some more work in front of us. Absolutely refuses the PEG and would not go to here appointment last week at the ALS clinic. All but told us this weekend that she has no intent on returning.

So....on to plan B.....if that doesnt work we will try plan C. I dont have a clue what that looks like yet but we'll figure it out.
 
@"ambulanceman":

Well, if it's her wish definitely not getting the PEG-tube, you guys will have to respect her wishes, regardless.
Going to the Clinic wouldn't have been a bad idea but, if she also refuses to do so, it's her decision and it will have to be honored.

Wish I could be more cheerful or helpful at this point.

Take care.

NH
 
Oops! I mean SHOULD use BiPAPS and not CPAPS. Sorry. And yes, you will all figure it out. No choice really. It's not going to be a happy ending but it'll be one with dignity and respect for your mother-in-law.
 
My mom also has bulbar ALS. She's in her early 70's. She has always been very strong willed so there have been times during this "adventure" that she was resistant to certain treatments but for the most part eventually conceded. Her's began with slurring words and a bit of choking on some foods, mostly liquids. Swallow study was very alarming so she pretty readily agreed to the peg tube a year ago. Thank goodness she did that while she still had the strength. She can't take anything by mouth at all. It's been a challenge for dad to learn how to get all the medications thru the small tube (fyi, mix ground meds with liquid in a jar with a lid and the key is "shaken, not stirred", makes them dissolve more readily). Mom is completely non verbal and her preferred method of communication is her dry erase board. She was not interested in any verbal technology.
We also decided to forego any more visits to the ALS clinic. They take 6 months to get in; we were just offered an appt for June but she is so much more progressed during the past 6 months that she really has needed more specific care from her pcp and pulmonologist. The clinic is in Tampa which is 2 hours from our homes in Orlando.
The whole medical ordeal has been an experience in trying the patience of all family members. Mom didn't like her first neurologist so she absolutely refused to go back. The next one she found has since retired so she is currently sans neurologist. But her immediate needs are more pulmonary anyway. She resisted the bipap machine initially but after a bout of pneumonia she came around and gave it a try.
One thing about ALS that I've read and now am experiencing with mom is that there is no predicting which symptoms will present next but the one guarantee is that there will be one. It's just a matter of waiting to see which you she'll get.
We're on the cusp of needing a wheelchair. She's still mobile with help so she's resistant to the wheelchair but we had it delivered to the house last week just in case. I anticipate she'll come around to that eventually.
My prayers are with you and your family
 
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