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    • #15633
      Dagmar
      Keymaster

      Do you experience difficulty when eating; chewing or swallowing? How about drinking?

      What tips can you share that have helped you to continue to be able to consume food or liquids by mouth?

      Which foods or drinks (or mixtures) that are easy to swallow and, provide good nutrition can you suggest to our members?

    • #15638
      Dagmar
      Keymaster

      I’ll start this discussion by sharing a few of my tips.

      Depending on the severity of the symptoms, options for ALS patients can include cutting up and chewing smaller pieces of food, changing the food’s consistency by blending it, or relying on a pre-mixed formula. In my case, I can still chew and swallow normal foods. But I add a powdered thickener to all my liquids. I use the brand: Thick-It. We find it in the pharmacy section of Walmart or now, order it through Amazon. (I wrote a blog post on the topic of swallowing)

      A fellow pALS had trouble swallowing normal foods, and had to have everything liquified. Her husband used a Ninja food processer – – he would liquify meals, soups, cereals, and more. They even took it along on a cruise (back when we had cruises!) and the ship’s food staff helped liquify her meals.

    • #15648
      Danielle Uskovic
      Participant

      Great advice Dagmar!

      I have bulbar onset so speech and swallowing have been my major challenges to cope with.

      For me:

      1. I monitor my daily calorie and protein intake via an app. It’s easy to not meet your nutritional requirements when you have bulbar onset because of the difficulty swallowing.

      2. I avoid soft breads, dry breads, anything too slippery in texture, lettuce on its own, some fruit like watermelon.

      3. Cutting up food into smaller pieces.

      4. Using lots of butter and/or olive oil on my food.

      5. Foods like pasta, curries, risotto/rice, stews work the best because they have a lot of sauce to help with swallowing.

       

    • #15654
      Fatimah
      Participant

      My mother diagnosed with ALS 2 years ago with bulbar type.

      She has difficulties whith swallowing. We noticed she lost weight  and lost her appetite as well.
      <p style=”text-align: center;”>She can not keep the liquid in her mouth , she adapted now by taking small amount of liquid and eating soft,wet food with sauce.</p>

    • #15656
      Dagmar
      Keymaster

      Fatimah – – I can relate to your mother’s swallowing issues. Thin liquids cause me to choke and almost “drown.” I can’t say enough as to how using the Thick-it powder has helped me continue to enjoy beverages (thickened) and not have to worry that the only alternative would be a feeding tube!

      I use the brand: Thick-It. We find it in the pharmacy section of Walmart or easily order it through Amazon. (I wrote a blog post on the topic of swallowing).

    • #15657
      Jonathan L Maddock
      Participant

      Hey, Dagmar….great advice on the Thick-it. I have immediately placed an order through Amazon. Small pills are a pain to swallow without something thicker. Thanks!

      I’ve taken to mincing my food up in a mini 3.5 cup food processor. Works like a charm. A few weeks back I was eating “normal” food, and came close to choking. It scared me, and now I’m much more careful about what I’m eating.

      I try not to drink out of a bottle anymore, I got tired of spraying the place. I sip from a glass, put my chin down, then swallow.

      Jon

    • #15659
      Dagmar
      Keymaster

      Jonathan – – good to know my tips helped! Let me know how the Thick-it works for you. It’s a little bit of a learning curve as to how much/little to use in different types of beverages. But once you know the particular amounts – – it’s the same every time.

      When pills are to “big” or clunky to swallow, I take a bite of cheese…chew it up…right before swallowing, pop the pill in, swallow… then wash down with a drink (thickened 🙂 ).

      Also, when drinking from a glass…try using a straw… it will automatically keep your chin down. Plus, you won’t have to hold/lift the drink up.

      https://alsnewstoday.com/2018/10/30/als-underground-last-plastic-straw-alternatives-paper-silicone-stainless-steel-sugar-pasta/

       

    • #15660
      Fatimah
      Participant

      Thank you Dagmar .

      You spread positive energy as usual.

    • #15661
      Elizabeth Benz
      Participant

      I’m having increasing problems swallowing too.  I have good friends who are speech therapists and said to take the pills with applesauce.  It makes such a difference for now.  At some point they may need to crushed too.

      I am using Simply Thick in my liquids.  It comes in powder or liquid.  We have a quart bottle of the liquid with a pump that makes it very easy.  But it is very sticky so if some gets on the cup it needs to be washed.

    • #15663
      Wendy Ferguson
      Participant

      Hi, thanks for the tips. It’s my daughter who has ALS.. her fvc has gone to 59 and doctors say she has to have a peg.. but she hasn’t lost weight, and can still swallow most things. It’s really upset her as she can’t have her two young children on knee and much higher level of care with peg. What do people think about having peg prior to any nutritional issues.?

    • #15672
      Dagmar
      Keymaster

      Wendy – – this is a huge decision that needs discussion and reflection. Certainly, when the pALS can no longer safely swallow food or drink by mouth, it’s time for a PEG (feeding tube). But, the decision to proactively have a PEG to “be prepared” or because the FVC (forced vital capacity of the lungs) is dropping – – and making surgical anesthesia risky – – then discussions begin!

      I have made it a priority to keep my FVC high, in order to avoid this forced surgery. (I was offered a PEG in my 2nd year “to be prepared” but I declined. Now 8 years later, I still don’t need one – – and in my case I’m glad I didn’t get it). But everyone has different ALS symptoms and health needs.

      Here is a video from our ALS writer, Kristen Neva: https://youtu.be/BHf0N0Bup1Q

      Here is my blog about improving FVC: https://alsandwellness.blogspot.com/2020/01/how-blowing-bubbles-helps-me-breathe.html

    • #15701
      Bev
      Participant

      Hi Dagmar
      My speech therapist ordered this device for me to strengthen my lips and tongue. Has anyone tried this yet?

      https://www.google.com/url?sa=t&source=web&rct=j&url=https://getabilex.com/&ved=2ahUKEwjNqNaxi6fqAhUQc98KHRMKCM4QFjAAegQIBBAB&usg=AOvVaw1THG-1KuLIU-u5slpYg3tG&cshid=1593437642011

    • #15704
      Dagmar
      Keymaster

      Hi Bev – – that is an interesting device… and no, I haven’t tried it yet. But would be interested in hearing from anyone who has.

      My reluctance with this type of device is that its goal is to “strengthen the lips and tongue.” Which may be applicable for people with dysphagia from a stroke, injury or surgery. Their motor neurons in the tongue muscle are still intact. In the case of ALS, the motor neurons in our tongues/mouths have died…and the tongue is operating on “2 cylinders instead of 4.” Much like our feet – – with foot drop, we can’t get the strength back in our feet – – only find ways to support them and keep the unaffected leg muscles strong.

      So, doing tongue exercise may not be beneficial. Maybe it would in early, early stages.

      However, for me, awareness of my neck/chin position when swallowing, adjusting the amount and type of food helps. Also, adjusting my speech and how I pronounce words (https://alsandwellness.blogspot.com/2018/03/als-dysarthria-use-these-innovative.html ) all help.

      Again, I look forward to you sharing with us what you think, after using the device for a while.

    • #15710
      Jonathan L Maddock
      Participant

      Dagmar, the Thick-it works like a charm. Easy-peasy. It really helps with swallowing small pills, and when I’m especially tired in the evening.

      And as a side note, to get more calories I’ve been adding instant milk to the Special K protein drinks I buy and sending it through the blender. I’m on a 3000 calorie per day quest.

      Jon

       

       

    • #15719
      Dagmar
      Keymaster

      Great news Jonathan!

    • #15811
      Walter
      Participant

      Hello: My diagnosis has not been confirmed yet, but my neurologist said he was sure I have ALS. I need one more test called the Nerve Test to confirm it. My symptoms started about 2 years ago with difficulty swallowing and slurred speech. I delayed going to a doctor thinking it was acid reflux possibly and would get better. I also had gradual weakness in my legs and loss of weight. I pureed my food for a long time and did okay for awhile, but about 6 months ago I had trouble even swallowing pureed food without choking and aspiration and totally lost the ability to speak in a way that anyone could understand. I had to write everything down to communicate. In March of this year I had surgery to put a peg feeding tube in my stomach. In 2 years I lost 60 pounds. I went from a weight of 170 down 110 pounds. Since insertion of the peg tube I have gained a few pounds to 113, but I am still very weak especially in my legs and arms and have developed breathing problems due to a lot of mucus in my lungs and throat and inabilty to cough it up very well. I am unmarried and live alone. I continue to live in my rural home and be independent for now, but not sure how long. I recently got a rollator walker which helps me get around much better.

    • #15812
      Dagmar
      Keymaster

      Hello Walter, I am sorry that you are experiencing so many challenges and not yet having a diagnosis. But, yes, everything you describe sure sounds a lot like ALS.

      Have you read this recent topic post about a program at John Hopkins Medicine to help people in the recovery from COVID-19? The program is actually good for anyone, virus or no-virus… especially to help those with breathing issues.

      Here is the link to the topic… the link to the PDF of the program is on the same page.

    • #15813
      Dagmar
      Keymaster

      Hello Walter, I am sorry that you are experiencing so many challenges and not yet having a diagnosis. But, yes, everything you describe sure sounds a lot like ALS.

      Have you read this recent topic post about a program at John Hopkins Medicine to help people in the recovery from COVID-19? The program is actually good for anyone, virus or no-virus… especially to help those with breathing issues.

      Here is the link to the topic… the link to the PDF of the program is on the same page.

    • #15814
      Walter
      Participant

      Thank you Dagmar. I will check into the link you provided.

    • #15820
      Elizabeth Benz
      Participant

      Walter, I too am sorry to read about your situation.  I don’t know where you live but I hope you can contact your local ALS Association chapter.  They  have been incredibly helpful to me , esp. with equipment from their loan closet.  Best of luck – God bless you.

    • #15821
      Walter
      Participant

      Thank you Elizabeth. I live in West Central Illinois near Quincy.

    • #15822
      Walter
      Participant

      Walter,

      Do you have a cough assist machine?  If not, ask the ALS Association for one.  It should help.  There is also a suctioning device available.  They say drink lots of fluids to keep saliva and/or mucus thinned.  There is also Mucinex which the ALS Association perhaps help you obtain.  I wish you the best!

    • #15823
      Walter
      Participant

      Walter,

      Do you have a cough assist machine?  If not, ask the ALS Association for one.  It should help.  There is also a suctioning device available.  They say drink lots of fluids to keep saliva and/or mucus thinned.  There is also Mucinex which the ALS Association perhaps help you obtain.  I wish you the best!

    • #15824
      Walter
      Participant

      Thank you Walter for the information. No, I don’t have a cough assist machine. I have heard of Mucinex, but have not tried it. I will try to add more water to my feeding tube. I add some water before and after each feeding to flush the feeding tube. Thank you.

    • #15825
      Elizabeth Benz
      Participant

      I have a cough assist machine and also a suctioning device.  I esp appreciate the suctioning because I get mucous up to a certain spot but can’t cough it out and it feels like it blocks my airway.  So I feel better being able to go in and try to suction it out.  It’s messy and not as effective when I do it to myself.  But then again I can feel where it seems to be.

      Good luck!

    • #15826
      Walter
      Participant

      Thank you for the information Elizabeth. I definitely need to look into getting a cough assist machine and suction device. They sound like they would be very helpful in the control of my mucus and breathing problems.

    • #15835
      Walter
      Participant

      I’ve had  PEG for around 4 to 5 years now, but never have had to use it for nutrition.  I only maintain it, which is easy.  I rarely know it’s there.  I did based on my Neuro’s suggestion, since breathing can drop suddenly, and GI won’t do the procedure.  It really wasn’t a big deal.  I have the button type that fits closely.  I was out like a light when they gave the Fentanil and another drug.  Woke with no side effects.  Stayed overnight in the hospital.  Good experience considering.

    • #15836
      Walter
      Participant

      I have to rely on my peg feeding  tube completely now for all my nutrition since I am unable to swallow food or water without choking or aspiration. Not only the swallowing process is a problem, but my mouth and tongue do not work very well. I have very little control of my mouth or lips. If I try to place food or water in my mouth it comes right back out all over my clothes and the floor or furniture. I have a problem with constant drooling of saliva from my mouth all over my clothes and the floor. I have no control over my saliva.

    • #15843
      Walter
      Participant

      Walter,

      I take one Nuedexta daily in the afternoon around 3 pm which has dramatically helped my saliva problem.  I am very sorry you have these problems to that extent.  I eat from a deep large plastic bowl and hold it close to me so it can catch anything.  Have your Neurologist or any health worker tried to help you with ideas of how to perhaps manage things a little better?

    • #15848
      Marianne Opilla
      Participant

      Has anyone experienced taste changes?  Sour and bitter are VERY exaggerated. It is so strong that I cannot eat fruit, yogurt, or juices.

    • #15852
      Walter
      Participant

      The doctors advised me that I should not attempt to swallow food or liquid by mouth anymore because of the risk of choking and aspiration pneumonia. They did a swallow test at the hospital in March when I had surgery to place the peg feeding tube in my stomach, and they said just about everything I swallowed was going into my airway and into my lungs.

    • #15854
      Walter
      Participant

      Yesterday morning I could barely taste anything, but usually I can taste everything.  Occasionally I cannot.

    • #15855
      Walter
      Participant

      Walter,

      Just follow your Doctor’s advice.

    • #15856
      Robert Rigsby
      Participant

      Hello, Y’all:                7/14/20

      I have a feeding tube and it is LITERALLY a LIFESAVER- wouldn’t be here w/out it! All nutrition/water via tube. My response to this subject is this, though: When my throat gets dry and I need to swallow a little water for relief I can get my head/chin in a certain position and while consciously swallowing (carefully) I hold my nose w/my fingers and I avoid choking. Only 1 swallow action, though, b/c if I try for 2 w/out releasing my nose my ears will, slightly, stop up. I am not able to swallow all the water but- enough for moistening.

      Again, I know this discussion is for those eating by mouth but, maybe, this procedure I have learned for swallowing thin liquids and avoiding choking will be helpful to someone…

      Thx RDR

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