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Tips on what I have found to be helpful as ALS patient.
I have bulbar ALS and was diagnosed in 2020. I have had a feeding tube for 2 years and recommend to those experiencing difficulties eating to have the procedure. It was a game changer and immediately stabilized my weight. I Had gone from 185- 150 lbs. we settled on 4.5 liquid hope (organic) and 1 benecalorie mixed with enough water with an emulsifier to put in a gravity bag and have three feedings daily. I preferred the gravity bag over trying to use syringes as you can sit at desk and do things. I do use the syringes to rinse the feeding tube and to add my meds which we crush and add in powder form.
That was tip one. Tip two is the follow up to what happens to all that food. I have found that a bidet toilet seat has been a life saver! It has made bathroom visits a breeze. No toilet paper, no assistance. Plus I was having constipation issues which when coupling a low dose of muralax and using the enema setting on the bio bidet has been a game changer. We have even brought the bidet to vacation rentals and installed it which has given me peace of mind away from home. Don’t know why they are not more mainstream. As I like to say to my Wednesday boy group what would you clean mud off your driveway with paper towels or a pressure washer?
This was my first posting and I hope it is helpful. I have other tips patients might find helpful but will see how this goes. Keep positive and spread love.
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4 Replies
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Hello.
Thanks for the tips. -
Thank you for the tips. Very helpful.
Best wishes to you.
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Thank you Leif,
My husband has a sporadic ALS with Bulbar onset. I appreciate your tip and would like to ask you for more information on what to be prepared for. He is getting very tired when speaking and it’s difficult to understand him. He can’t use his hands/arms and I am worried about communicating in the future. Few days ago he got his PEG tube that he absolutely hates because he gets nauseous when using it.
I am thankful for any tip you can share.
Wish you courage and strength,
God bless
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Hi Tiana, I also have speaking issues – – they began 4 yrs after I was diagnosed. I slurred my words and ran out of breath. Since then I have been on a quest to improve my speech – – and not just accept the prediction that all pALS will lose the ability to speak. I wrote an in-depth post about what helped me (breathing and speaking techniques). Perhaps these will be of help for your husband.
https://alsandwellness.blogspot.com/2024/10/im-still-talking-and-sharing-strategies.html
alsandwellness.blogspot.com
I’m still talking! And sharing strategies that help my ALS speech
ALS patient Dagmar Munn share the various strategies she uses to help her ALS speech
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