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Time Is Motor Neurons

A father’s perspective: Our journey to finding a treatment

When Quinn, our soon-to-be-born daughter, didn’t make as much movement in the womb as our other 3 children, my wife, Annie, and I thought we had the “chillest” baby in the world. We joked that she was saving up all her energy for when she entered this world kicking and screaming. Quinn was born in August 2018, and she was the most beautiful little girl. Over the first few months, nothing seemed out of the ordinary. In fact, she appeared healthy and had strong upper body strength. But by the time Quinn’s 9-month check-up came around in June, her physical condition started to change.


This topic has 10 replies, 7 voices, and was last updated 8 months ago by Tracy Odell.

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    • #20714
      Ryan Berhar
      Participant

      Sometimes when I’m eating (usually something stringy like lunch meat), it will get stuck in my throat. Not inhaling it down the wrong pipe, but it gets stuck in my throat. It always scares me when this happens, because I can’t tell whether I need to wash it down, or try to get it out somehow. Do you guys have this problem? If so, how do you fix it?

    • #20715
      Robert Stump
      Participant

      You might want to go to an ENT so they can evaluate your esophagus and your swallowing mechanisms to make sure there isn’t some type of defect or webbing causing this problem.  They will probably attempt to scope your throat or schedule you for a swallowing study with imaging.  You may also be referred to a speech therapist who can give you techniques and exercises to assist with your swallowing.

      Hello, given the nature of SMA, this might just be something you will need to just manage and try to minimize.  I started having troubles like this 12-15 years ago, and unfortunately it has only gotten worse with time even going through all of the above steps with the ENT and a speech therapist.  I have resorted to making sure all of my food is soft, I take tiny tiny bites, and I make sure I am very careful when swallowing and have plenty of liquid standing by.

      • #20716
        Ryan Berhar
        Participant

        Yeah, I’m more cautious now. I don’t really  see any reason to be evaluated. I mean, I know what the problem is. I’ve never been able to swallow well.

    • #20717
      Kelly Miller
      Participant

      Ryan, I started having the same kind of problems you mention about 20 yrs. ago (age 35). I have since gotten a feeding tube (mic-key) in 2014, but until I did, I developed a way of tilting my head slightly to the right & down to get the food to go down. As it gradually got worse with more varieties of food getting stuck, I developed another technique for the pieces that were trickier. That was to move my lower jaw & neck so that the food would work its way back up. What I found when I did this was that it was usually a piece I either had not chewed thoroughly enough or would never be able to chew all the way at all. At that point it was just chew it to little bits or spit it out!

      Robert suggests some very good things that also worked for me as it got really bad: eat soft foods only and choose them until they are extremely small. What worked ( & still does bc I can’t give up my love for steak!) well for me was to grind up difficult items such as chicken, steak, ham, really any kind of meat except hamburgers. I also had to cook things like broccoli, carrots, cabbage, cauliflower, etc. within an inch of their lives. Lol, I became a master at the soft foods. It might be a good idea to get your neurologist to refer you to someone who can do a swallow test at the very least. This is usually a speech pathologist (I know that seems weird) who will monitor how you swallow thru an x-ray machine, both with & without food.

      In 2014, I was even aspirating little bits of saliva when I swallowed normally without even eating. That brought on the feeding tube. I didn’t want to do it because I felt it made me look even more crippley than I already did. But, there was no denying I was getting pneumonia twice a year, and odds were it was because I was aspirating way too much. I know it’s a lot to think about & very scary on top of it, but it’s not always a bad thing. You can still eat foods that you enjoy that will be soft & easy to swallow. It just means you get your nutrition thru some kind of formula (or even real food blended – that’s what I do), so you don’t have to worry about not eating enough of stuff with proper vitamins or only eating junk/for vitamin foods because they are easy. It’s kind of a win-win situation really!

      • #20724
        Ryan Berhar
        Participant

        Sometimes I can sort of put my head upright and the food goes down. I’ve actually had a feeding tube for most of my life, but I still eat a small amount during the day.

    • #20720
      Crystal
      Participant

      I had to have swallow studies after having a small stroke during my spinal surgery and I haven’t been able to eat solid food since. I’m on an all fluid diet that runs through a tube in my nose. It sucks, but luckily someone invented chap sticks with awesome flavors. Lol. Anyway, BEFORE the surgery I still had problems like you. For lunch meat, I found cooking them helped – besides, hot ham and cheese sandwiches are way better than the cold ones anyway in my opinion. For cheeseburgers, my dad would cut the meat up for me and arrange the other ingredients on my plate like a salad – with ketchup as the dressing. Other meats I had to basically soak in a sauce. Most people dip their steaks in steak sauce, but I would have someone cut my steak into very small pieces and then I’d cover them with steak sauce like sawmill gravy over country fried steak. I can’t think of anymore but basically, I found ways to enjoy the food even if it was weird. Oh yeah, another one was spaghetti – we never had meatballs (thank God) but the noodles had to be cut for me and even then they were kinda slippery so I’d almost choke a few times. Then, because I was a weird child, one time I mixed some applesauce into the (cut up) spaghetti – and problem solved!  My brothers made fun of me real bad, but it was delicious and I no longer had to worry about choking. Lol

    • #20722
      Kelly Miller
      Participant

      Crystal, can’t they put a feeding tube into your stomach instead of you having to have the NG tube? That way you could have better nutrition rather than just fluids. And, you wouldn’t have to keep one in your nose & down your throat! That must get tiresome after a while. They even have little buttons like I have called a mic-key where there is no long tube hanging out to get in the way.

      • #20725
        Ryan Berhar
        Participant

        Yeah I can’t really imagine doing the nasal tube, but it works for some.

    • #20726
      DeAnn R
      Keymaster

      Even though I have a feeding tube, I cheat with regular food. Like with other comments, I try to stick with soft foods, or chew really well, but I still get crumbs that tickle my throat. Usually a drink helps. If something does get stuck sometimes turnibg or tilting my head helps. I’ve considered checking into this as well https://lifevac.net/?fbclid=IwAR07fbJFpvrMQZnD_ZpeX6ygmnfIrX8rfWm08we5zcAtiVNDsb3bdgriOvw

    • #20740
      Halsey Blocher
      Participant

      This sort of thing definitely happens to me! Usually with meats and also sometimes chips and harder breads. Usually it goes away with a drink, and if not I sometimes I can sort of make myself “gag” so that I can either chew it more or spit it out. Sort of like what Kelly described. I also make sure I’m sitting in good position when I eat, and I avoid troublesome foods when I’m tired. I also usually stick with soft food, but I do have my guilty pleasures. I just have to be really careful about when I choose to eat them. And like a lot of people here, most of my nutrition comes from my feeding tube. Food is just because I enjoy it.

    • #20783
      Tracy Odell
      Participant

      On top of SMA 2, I had a stroke last year. My trouble swallowing became more of a concern after that. Here are some suggestions from a stroke manual. I find many of these helpful to me:

      Some ways to help are:

      • Changing the texture of food and the thickness of drinks
      • Changing the feeding position
      • Sit straight with head slightly forward and chin slightly down. If needed, use pillows for support and to ensure you do not lean to your weaker side when you eat.
      • Sit at eye level with the person feeding you. You should always face the person feeding you.

      Changing the environment and set-up of meals. Keep from becoming distracted when eating by:

      • turning off the radio and television
      • limiting the number of people talking during meal times

      A Registered Dietitian can:

      •  help you learn how to change food textures and drink thickness
      • give you information about managing feeding tubes

      Tips for safer eating and swallowing:

      • Eat and drink only when you are fully awake.
      • Sit up straight in your chair or bed.
      • If applicable, make sure you wear their dentures, hearing aids and/or glasses at all meals.
      • Make sure your mouth is clean and clear before meals.
      • Take small bites and sips.
      • Make sure the first bite or sip is swallowed before taking the next.
      • Make sure your mouth is clean and clear of food after every meal.
      • Make sure you remain sitting up straight for 20 to 30 minutes after eating.
      • Try to make eating a slow and relaxed experience.
      • And of course, talk to a health care provider if you are having trouble eating or drinking.
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