Old 02-20-2018, 04:50 AM #1 (permalink)
Hammerheadzed's Avatar
New Member (Say Hi)
 
Join Date: 2018
City: Toronto
State: Ontario
Country: Can
Diagnosed: 02/2018
Interest: I have been diagnosed with ALS.
Posts: 5
Hammerheadzed is on a distinguished road
Hammerheadzed Hammerheadzed is offline
New Member (Say Hi)
Hammerheadzed's Avatar
Join Date: 2018
City: Toronto
State: Ontario
Country: Can
Diagnosed: 02/2018
Interest: I have been diagnosed with ALS.
Posts: 5
Hammerheadzed is on a distinguished road
Unhappy Need some help on weight gain and stomach collapsing when I lie down

Hello everyone.

So a bit of background for me. I had some issues swallowing for over a year. I had an EMG in Oct 2017 that indicated diffuse denervation. I thought it was multiple sclerosis at first, then Kennedy disease then oculopharyngeal muscular dystrophy due to wishing it wasn't ALS and also the slow progression in my case. However, my neurologist says it is bulbar ALS and he has referred me to the ALS clinic at Sunnybrook in Toronto. I think I've come to terms with the diagnosis because I think my neurologist knew it was ALS back in Oct 2017, but he wanted to rule out some things before confirming the diagnosis and mentioned it could be ALS and I guess that was his way of letting me down easy. Anyway the second EMG didnt show progression but it was done a lot sooner (4 months vs 8 months) so he said that the denervation in my thoracic region was caused by ALS as you wouldn't get a pinched nerve there anyway and definitely not as many as would be needed to explain the EMG findings (I can post the EMG test if anybody can elaborate or is inerested).

Anyway I had a stomach tube put in after losing ~40lb and its slowly helping me gain weight, but the problem is that it is very slow and very restrictive, which I will explain below. I take almost nothing by mouth (odd chocolate or pizza slice) because as my dysphagia worsened I began to use water to wash down solids and food that could get stuck in my throat and also clear out my throat of remaining food debris. When liquids became an issue solids automatically became a much scarier prospect due to choking which i have gotten a few times. I also had liquids go right down my airway and that is terrifying. So my main question is how to gain weight on a blended diet. I take four 500ml cups of blended chicken/rice/veggies or salmon/potatoes/veggies a day and two plus calorie boost. I also add some olive oil to each of my meals but I am only gaining weight very slowly (i put on ~5lb in 5 weeks). However to put on weight I have to be pinpoint accurate in my feedings because I cannot tolerate the boost/ensure in large quantities. So i take half a boost dilute with equal parts water then an hour later one cup blended food and repeat each every four hours to get 4 cups of food in and two boost in. By spreading it out I avoid nausea and also bloating.

So I would like some help on how to gain weight. Also I suffer minor constipation. What would help with that? I hear prune juice is good but how much and how often?

Lastly, my breathing is not too bad right now but when I lie down because I am so skinny it feels like my stomach caves in and this makes it hard for me to breathe. I find it hard to sleep because I can only sleep on my side now and even that only on my right side because my left has my stomach tube and sleeping on my left side irritates my stoma for some reason. Is putting on weight the only remedy for this? Maybe raising my bed a bit?

Any advice would be appreciated.

thanks!
Hammerheadzed is offline  
Old 02-20-2018, 08:32 AM #2 (permalink)
Nikki J's Avatar
Extremely Helpful Member
Forum Moderator
 
Join Date: 2012
City: Boston
State: MA
Country: US
Diagnosed: 04/2014
Interest: I have been diagnosed with ALS.
Posts: 6,440
Nikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond repute
Nikki J Nikki J is offline
Extremely Helpful Member
Forum Moderator

Nikki J's Avatar
Join Date: 2012
City: Boston
State: MA
Country: US
Diagnosed: 04/2014
Interest: I have been diagnosed with ALS.
Posts: 6,440
Nikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond repute
Default Re: Need some help on weight gain and stomach collapsing when I lie down

Hi

Sorry for your diagnosis. Welcome

Gaining a pound a week sounds pretty good! Boost/ ensure may not be agreeing with you. If you can blend and tube high quality high calorie food you might do better? There are recipes and suggestions here for high calorie smoothies and other tricks. Another thought is using a pump to slowly feed

Getting enough fluid may help with constipation. Things like prune juice can help too. Start slowly and see what works best for you

Many PALS can’t sleep flat. Most end up with a hospital bed which not only allows you to adjust the head but can make positioning and getting in and out easier

We are glad you found us. Have a look around the site and ask and post often!
Nikki J is offline  
Old 02-20-2018, 05:20 PM #3 (permalink)
KimT's Avatar
Extremely Helpful Member
 
Join Date: 2014
City: The Beach
State: South
Country: US
Diagnosed: 08/2015
Interest: I have been diagnosed with ALS.
Posts: 2,845
KimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond repute
KimT KimT is offline
Extremely Helpful Member

KimT's Avatar
Join Date: 2014
City: The Beach
State: South
Country: US
Diagnosed: 08/2015
Interest: I have been diagnosed with ALS.
Posts: 2,845
KimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond repute
Default Re: Need some help on weight gain and stomach collapsing when I lie down

I would think blending some avocado, coconut oil, protein powder and coconut water would provide plenty of calories and also be good for your general health. Staying away from dairy will help with constipation as will taking magnesium. I take 1,200 mg a day of magnesium but you'll probably have to work up to that dosage.
KimT is offline  
Closed Thread

Tags
advice, als, bed, breathing, bulbar, bulbar als, choking, clinic, constipation, denervation, diagnosis, diet, dysphagia, emg, food, meals, nausea, neurologist, oil, problem, progression, sleep, swallowing, test, wanted


Currently Active Users Viewing This Thread: 1 (0 members and 1 guests)
 
Thread Tools Search this Thread
Search this Thread:

Advanced Search

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off
Trackbacks are On
Pingbacks are On
Refbacks are Off

Similar Threads
Thread Thread Starter Forum Replies Last Post
Weight, loss/gain LizF People With ALS - "PALS" 12 08-11-2017 02:35 PM
Hoping to gain insight Scared16 Do I Have ALS? Is This ALS? 29 09-08-2016 10:21 PM
baclofen weight gain acesjr68 General Discussion About ALS/MND 9 09-13-2014 04:08 PM
weight gain or als belly smwelder General Discussion About ALS/MND 15 04-27-2011 07:21 AM
How to gain weight/ Stomach Upset fab1 General Discussion About ALS/MND 14 11-30-2009 09:05 PM


All times are GMT -5. The time now is 06:02 AM.

 

Who we are

"We are a volunteer-driven online community that originated in 2003. We are a resource for anyone affected by ALS and MND. We are a community of like-minded and compassionate individuals. Together we are the ALS Forum and together we build this online resource and online community."

 

Want to help?

Have you found our website helpful? Do you enjoy having a place to talk to people that are knowledgeable about ALS and MND? If you have found it helpful to chat with people at different stages of the ALS/MND journey we encourage you to get involved.

Copyright © 2016