Hammerheadzed
New member
- Joined
- Feb 20, 2018
- Messages
- 5
- Reason
- PALS
- Diagnosis
- 02/2018
- Country
- CA
- State
- Ontario
- City
- Toronto
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!
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!
