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    Adapting to Life Outside Our Home With SMA

    I once heard a joke that a woman’s mind is like an Internet browser that has 1000 tabs open and running at once. I laughed at the time, but came to realize that if I didn’t actually feel like this before hearing the short acronym “SMA,” I most certainly do now.

    I spend much of my time pre-planning and thinking of possible problems that we may run into because of the kids’ diagnoses. I think many other SMA parents do this as well. Prior to our lives with SMA, we didn’t realize just how inaccessible the world is to those who are differently-abled.

  • This topic has 27 replies, 10 voices, and was last updated 1 year, 3 months ago by Kelly Miller.

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      • #12519
        Kevin Schaefer
        Keymaster

        Generally I try to plan when I have a bowel movement so that I go when my caregiver is with me, or before I take a shower in the morning. I do this to avoid having to get up in the middle of the night, and also because it’s a little harder for my Dad to transfer me to the toilet seat than it is for my caregiver.

        However, I have had several instances lately of stomachaches in the middle of the night. Sometimes I’ll go before I go to bed, and then still wake up after midnight having to go again. It’s a pain because I have to get one of my parents up, and then both of us are tired the next day.

        Does anyone else have this problem? Maybe it’s just that I eat out too much and need a more balanced diet, but still it’s frustrating. It doesn’t happen constantly, but still more often than I’d like.

      • #12529
        DeAnn R
        Keymaster

        After 38 years I still have not mastered this one.  Luckily it’s only maybe once a year I have to get up during the night to use the bathroom.  Still I feel bad because it’s such a process.  In my case though I have paid caregivers, so it’s a little easier to justify.  My trouble lies during the day.  Sometimes my feeding tube formula doesn’t sit well and I’m scrambling to find someone to come an hour or so after they’ve left.  Imagine having to go, like probably 10 minutes ago because you were hoping your tummy would settle, but nope.  You have to decide which PCA would be able to come.  By the time you get ahold of someone, they get there, you do the whole transfer process and get to the toilet you’re looking at probably at least an hour.  That hour can seem like an eternity.  Not fun. The whole process half asleep I’m sure is miserable as well.

        Have you tried a probiotic?  It was suggested to me to get on a more routine schedule, but didn’t really seem to help me out.  Like you, sometimes even if I went earlier I’ll still have to go later.  I know some folks have gotten a colostomy, but seems drastic to me.  I would try to pay attention to what types of food you’re eating.  When I could eat, I tried to avoid greasy or fried foods and heavy foods and I didn’t eat after 8 at night.  The not eating after 8 contradicts what SMA “guidlines” suggest though.  Another thought is have you been on antibiotics?  They can mess me up something terrible.  If that’s the case probiotics may help.  Hope you find a solution!

        • #12530
          Kevin Schaefer
          Keymaster

          I’m glad I’m not alone haha. Fortunately this is much less of an issue now than it used to be, but it is annoying when it does happen. I haven’t looked into probiotics or anything, but I might talk about it with my doctor eventually. Thanks for the advice!

      • #12542
        Ryan Berhar
        Keymaster

        I sometimes run into trouble with this because I’m often in the care of my mom, who is unable to lift me onto my bathroom chair. I have three options: see if my dad can come home, go to my grandma’s house (yes, Gma can lift me. She’s a legend. I’m there three nights a week so we have good accommodations) or just wait it out. It’s one of those things that is what it is. You can’t always plan for it. The only practical advice I can offer is not to eat foods that are on the rich side (or perhaps just don’t eat anything at all)  when you know you won’t have anyone to assist you with the deed.

      • #12544
        Michael Morale
        Keymaster

        I use to face the same problem, and it’s a subject that plagues all of us.  Back in 2011, I voluntary went to a colon rectal surgeon and he put me in the hospital to perform a colostomy on me.  I know a lot of people may think it’s a bit overkill, but like DeAnn said, waiting an hour to get help, seems like an eternity.  My colostomy was the best option for me and it’s been a lifesaver.

        • #12547
          Kevin Schaefer
          Keymaster

          Interesting. Were there any side effects or was it a pretty smooth process?

      • #12568
        Esther Collington
        Participant

        I have to use a laxative because constipation is a big problem because of painkillers. Sometimes this causes problems and occasionally I’ve had to resort to an extra painkiller because it’s so exhausting to be hoisted an extra time.

      • #12588
        Adnan Hafizovic
        Participant

        I agree with DeAnn.We must that we dont eat late and spicy.I have sometimes similar problem and I use probiotic and hepls me.It is good to use time to time probiotics.And we must eat often small meals.

      • #13595
        Alex Telenson
        Participant

        I’m late to the party on this posting!

        The way I’ve come to manage this is a bit ridiculous, but works for me. Since I do love to eat, but I know that putting on weight is an issue, I basically allow myself one meal a day – usually around lunch. So if I want a double bacon cheeseburger with large fries, I can justify eating 1200 calories in one meal because that will fill me up for the day. This also regulates my bowel movements pretty well where my body knows it has to wait till the evening before it can start giving me troubles.

        This is certainly not for everyone, but you do what you got to do.

        • #13601
          Kevin Schaefer
          Keymaster

          I can relate to this. I too try to limit myself to one big meal a day, and then eat a lighter dinner or lunch. Like you said, it’s best just to find what works best for you.

      • #13602
        Kelly Miller
        Participant

        I have this problem because of my painkillers also. Actually, even as a small child pre-pain days (oh those were the days!), I was on a weekly routine with the bathroom situation. I went once a week… on the dot. Every time I would go to the hospital, I would have to lie to them & say I had just had a BM that morning. Then, they weren’t coming in every 5 minutes to ask me if I needed “help”. Now I’ve managed to go twice a week, but there is no set laxative or routine that really works every time except someone helping me manually. I hate to do it that way but it saves my stomach bigtime & there’s no problem with the right person not being there.

        As for eating, I can’t possibly imagine not having something after 8 PM! My stomach starts rumbling around 10 and I’m not even close to going to bed until after 12. One thing I will highly recommend is my new feeding tube “formula”. I put it in quotation marks because it’s no longer the processed type of grossness that the DME’s love to send. This is a blend of nothing but foods! It’s a company that was started by a young “tubie’s” mother who was tired of her poor son having horrible stomach aches, diarrhea, nausea, & bloating from his feedings every day. She decided to make a blend of chicken, orange juice, brown rice, squash, flaxseed, & almond milk. She ground it all up in a blender and put that in his tube instead. After a week of these meals once a day, he no longer had any stomach issues! Well, I thought if it’s good enough for him, maybe I should try it also. Only, I was feeling better after 2 days! I slowly increased the amount & frequency of these real feedings until I had completely eradicated the processed formula.

        I’m not an employee of the company or a stock owner or anything but I do tell everyone I come in contact with who has anything to do with feeding tubes about this brand. It’s called Real Food Blends. They have a website which I will put a link on here to it at the bottom. I suppose I could make my own blends but it’s easier to just open a package, add a little water or juice or almond milk, and then pour it in. My insurance pays the DME for it and they ship it to me once a month, just like the old formula. I have noticed also an increase in energy & an all-around general better feeling. I would highly suggest, if you use a feeding tube, to try this out. They do recommend taking a multivitamin to round it all out, but my G.I. already had me taking one anyway. I purchased a couple of “Blender Bottles” to alternate cleaning & using, and I just store the leftover package (I have 2 servings per pkg) in the empty cup. If you use a feeding tube, give it a try with the sample box! You’ll never go back to Jevity or anything else! 😍

        http://www.realfoodblends.com

        • #13670
          DeAnn R
          Keymaster

          I hate my feeding tube formula!  Recently I’ve been talking to a dietitian to see about switching.  With the amount of formula they want me to have, it just doesn’t always sit well and I’ve been having tube problems, so they agree switching formula might be a good thing.  I’ll bring this up, but typically if they’re not familiar with it they’ll be hesitant to try it.  How long have you been using it?  Did you need a prescription to get it covered?

      • #13685
        Kelly Miller
        Participant

        DeAnn, yes, I did need a prescription in order to have my Medicare & secondary cover the real food blend. But, there was no problem. My GI. is really good about doing whatever I want to do. All I have to do is email her nurse, who I absolutely LOVE, & then wait for her to get it approved by the insurance (my Medicare is under an advantage plan). She contacted the DME for me (I found one that distributed the blends & gave her the name) and they put it on a monthly distribution. They email me every month asking if I want it on the usual day & I just check it off. Then I receive it. This is Edgepark sending it. I don’t usually like them but they were the only ones in my plan who had it.

        I’ve been using it now for 2 months. I’ve never felt better really in my entire life! No more stomachaches, no more bloating, no more almost throwing up every day. I’ve quit losing weight & have even gained a bit. I’ve been trying to do that for 2 years with no success, until now. I also bought 2 Blender Bottles (from Amazon) bc it’s easier to shake it out with my meds & store the part I don’t use from the bag in that. The bags, unfortunately, are not resealable. That would make them perfect but it would probably also make them more expensive. What you can do (if you’re brave enough to try without your doc giving you permission – I do it all the time 😊) is buy a sample box from the actual website to see if your tummy is okay with it. The box comes with 5 of each flavor (5 flavors). But, you can switch out ones you don’t care about for ones you like better. For instance, I traded out the vegetarian quinoa ones for extra chicken & salmon ones. The owners of the company are super nice to do that. You’ll have to pay out-of-pocket for the sample box. You can also get them from Amazon, but you take what you get in that sample. Doesn’t really matter I guess since we aren’t actually eating them.😜 Are you worried about doing it without your doc telling you it’s okay?

        • #13693
          DeAnn R
          Keymaster

          Kelly, I’ve just never known what was out there. For all of the reasons you mentioned I’m ready to make a formuula change.  I’ve started working with a new dietician that seems pretty receptive so I forwarded this option to her.  Interested to see what she has to say.  Of course her knowledge on SMA is minimal but she seems interested to learn. May I ask what type of multivitamin you take?  Do you crush it or is it liquid?

      • #13725
        Kelly Miller
        Participant

        D,

        I actually don’t take either crushed or liquid. I can still eat regular food for pleasure, so I eat these extra soft gummy vitamins. They aren’t really gummies like kid candies or anything like that. They are very, very soft. It’s called “Natrol Multivitamin Gummy for Women”. I got the 90 ct for about $8.38. Unfortunately, it was an add-on item, which means you have to buy $25 in products to get it for that price. I was already buying stuff, so this wasn’t a problem. They probably have others as well, but I didn’t really look.

        Since they are so soft, I don’t have to worry about not being able to chew or swallow them. You might even be able to let them melt in your mouth. Directions say take 2/day but I’ve been taking 1 because I only weigh 60 lbs. They taste pretty vitaminy, but I love that taste. So far, I think it only has 2 flavors – berry & some kind of citrus that is very yummy to me! My husband loves the flavors too, as well as my friend. (They felt like they both needed to try them because they looked so good. 🙄) They are a tad gritty because of the vitaminyness, which means I have to be careful to drink water afterwards so I don’t start coughing a little. Might be worth a try. I did lots of research on Amazon of all the gummy ones & came to the conclusion that this brand had the most natural things in it – meaning I could actually read all of the ingredients!

        I hope this helps. As you can tell, I’m no good at writing short responses. I don’t know, I guess I feel like I have to explain everything down to the minutest detail to make sure you get all the info. Hope it’s not too much of a bummer to deal with when I do it.

        I would kill for a dietitian who would actually work with me & be willing to learn about SMA. I went to one included in my Medicare advantage plan HMO & she was a total idiot. She never heard of SMA but didn’t want to admit it for a bit. Then she proceeded to tell me things I could easily find online as far as what to eat. I had already done my research (as most of us SMAers already do for everything), so she wasn’t telling me anything I didn’t already know. She didn’t even offer to send me a list of what to eat & what to avoid – not that she knew anything about what someone with SMA should eat or not. Did I say “send” me a list? Yes, she told me she never met with her patients face-to-face but had all of her appts by phone. Ridiculous! I had that one & only appt with her! 😕

        So, if you get any decent info from your dietitian would you please, please, please share it with me??? I’m dying to know if there’s anything new out there or anything I should be doing differently. I will gladly let you know if I have any updates on any of this or any other devices I use (feeding tube – mic-key, SPC). Please feel free to ask me any questions about anything!

        K

        • #13748
          DeAnn R
          Keymaster

          Kelly,

          I’m a bit long winded myself, so no worries.  I even text in full sentences, lol.  I could probably do gummy vitamins, after all I cheat with Sour Patch Kids when I have a sweet tooth craving.  Yesterday I went in for labs, and the dietitian added a bunch on so we’ll see how my levels are and go from there.

          Yes, I was very impressed with this dietitian.  Although she has no clue about SMA, she was already looking into it and was very receptive to what I had to say.  Fingers crossed we’ll come up with a good plan.  I’ll keep you posted.

          When I first got my tube it was awful.  They basically put me on a formula and showed us how to do it.  The first time my tube was changed out, they put this archaic tube in that had the tube I had to tuck into my clothes and no clamp, just the end cap.  Thankfully I had enough sense to go elsewhere and got a Mic-Key.  Now to get the formula straightened out.

          Curious, how long have you had a feeding tube?  I don’t recall if you mentioned that.

      • #13776
        Kelly Miller
        Participant

        D,
        OMG, I text in sentences also AND put a period at the end of the sentences!

        The vitamins I use are even easier to chew than Sour Patch Kids. That’s why I like them so much. I don’t think you would have any problems.

        Definitely let me know what labs she ran for you & if they help determine anything significant for you, meaning anything that tells her how to help you. My GP is very good about doing a modified physical on me once a year to run the average blood work she would run for anyone else. My urologist runs kidney ones once a year as well. If there are some special ones that she ran for you that I should do, I would love to know so I can tell my GP. I’m always looking for new ways to tell things that might not be right with me that I can correct.

        Yeah, I had that long feeding tube that tucks under your shirt for a long time. One of my MD (muscular dystrophy) friends told me all about the mic-key & I had to talk my G.I. into it. For some weird reason, she didn’t think it would work on me. She said it was because she thought I was too small, but I knew I could do it. I went to a surgeon she referred me to (why him I have no idea) & he was more than willing to have the mic-key rep meet me at the surgeon’s office. We put it in on that 1st meeting & I have absolutely loved it since. I’ve had a feeding tube for 4 1/2 years now – I’ve only had the mic-key for 1 year. Only changed it once so far but I’m about to do the 2nd change any day now.

        On a more fun note, my husband, a friend of mine, & I are about to go on a 7-day cruise starting Sept 29th. My husband & I have been on 5 before but my friend has never gone. I can hardly wait to get on the ship where I can have food anytime I want & anything I want. I love the sun & the ocean, so it will be heaven for me. We will be going to Cozumel, Jamaica, & Grand Cayman. I can’t get off the ship in Grand Cayman (bummer because I hear it’s beautiful) but the other 2 should be no problem. It’s okay because I like to stay on the ship & talk to people who didn’t go ashore. My favorite thing, however, is dessert in the dining! They have a chocolate melting cake that is absolutely the best thing ever. It’s a little bit of cake on top with very chocolatey, gooey, fudgy, liquid in the middle. The whole thing is in a ramekin & heated. I go right past the other desserts each night & straight to that one! I’ll take pics.

        Tell me what you like to do for vacation. Where have you been that was the best?

        • #13795
          DeAnn R
          Keymaster

          Kelly,

          I’ve been concisely trying to leave off punctuation in my texts as well as adding emojis.  It’s almost stressful!

          Labs are in that the dietitian requested.  Looks like it was vit b12, potassium, phosphorus, sodium, magnesium and vit d.  All came back within normal range, yay!  The vitamin d however should be above 30 and mine was 30.6, so she is recommending a supplement.  Apparently her research has indicated it’s quite common for SMA to have low vitamin d.  She has a call in to an SMA dietitian, so should hear back what formula change they suggest.

          So glad I switched to the Mic-Key. I’ve been having leaking issues though which is partly why I’m looking into formula change.  Nothing is wrong with the tube or length, so they suggested it may be that the formula isn’t sitting well.  Fingers crossed switching formula will help.  Do you change the Mic-Key out yourself?  I know some do, but I’ve always just gone in.

          Your vacation sounds amazing!  That dessert sounds divine.  Do you find cruise lines accessible for the most part?  I’d love to do one, but am not much of a traveler.  We did make it to Hawaii once, Honolulu & Maui.  Still remember the warm mist when it rained.  Unfortunately I’m sure it wasn’t the same as when hurricane Lane blew through. That trip was the one and only time I’ve flown.  Do you travel often?  Which cruise has been your favorite?

          • #13892
            David Z
            Participant

            Thanks for posting which labs your dietitian ordered! Interesting that low vitamin D is common. Please post any suggestions they give.

            FWIW, I tried a different brand of blenderized formula (http://www.functionalformularies.com/) briefly, and it didn’t agree with me at all, so I stuck with Jevity. I’ve since switched partially to an amino-acid diet, however, and found that it agrees with me much better (less feeling bloating), and made bowel management much easier as well.

            Also, the Mini-ONE button balloon is supposedly shaped better to avoid leaking.

          • #13893
            DeAnn R
            Keymaster

            David- I asked about the mini-one, and just got told they don’t carry it.  Hesitant to order it on my own, I’d probably get the wrong thing.

            As far as formula, the dietician just gave me a couple options:

            http://www.nestlenutritionstore.com/products/General-Tube-Feeding-Nutrition/COMPLEAT.html#.W4hKMkxFy70

            https://www.nestlehealthscience.us/brands/peptamen/peptamen-hcp

            I have no clue on this stuff, so guess I’ll just pick one and see how it goes.  I’m trying to compare nutrition information but most of it’s Greek to me. What are you doing for the partial AA diet may I ask?  It intrigues me, and I mentioned it to the dietitian.

             

      • #13800
        Kelly Miller
        Participant

        Hey, you think we should switch this to private email? I’m just thinking, I would love to keep talking to you but maybe not out here in the open for everyone to read. I’m sure they are probably bored with our conversations.

        My email address is: [email protected]. Send me something so I can get yours & I’ll write you back.

      • #13895
        Kelly Miller
        Participant

        DeAnn – I looked into the Nestlé brand formulas before I switched bc my DME I was using had them in their “real foods” category. From everything I could tell, they had as much crap in them as the regular formulas. I loved my DME but didn’t want “stuff” in my formula that I could pronounce. That’s when I finally decided to go with the “Real Food Blends.” I actually had to find another DME that would carry it bc my doctor/her nurse wouldn’t have had time to research it & I didn’t want to give them any reason to tell me I couldn’t switch. So when I gave them the DME name that just happened to be one I was using for my urological supplies, it was a no-brainer. Maybe if you researched it, they would not mind you changing to it.

        David – I know I’m sounding like a broken record but I really LOVE my new formula! Again, it’s called “Real Food Blends” and is exactly what it says. It’s made purely from real food, your protein comes from meat or they have a vegetarian flavored one. I personally prefer meat in my diet, so I go with those. There is also a breakfast version that has eggs & oatmeal. Makes you feel like you are getting a serious meal. I do take a multivitamin to round out my nutrition, but I was told to take those way before I got my feeding tube, just didn’t do it. I’ve never felt any discomfort or bloating or anything since switching over, even though I didn’t transition it as slowly as they suggested. I would highly suggest giving it a try. As I said to DeAnn in a message a while back, you can purchase a box of a variety of flavors from the company’s website or Amazon to give it a try. That’s when I did & I was sold.

        • #13905
          David Z
          Participant

          Do have any problems with clogging when using Real Food Blends?

      • #13896
        David Z
        Participant

        DeAnn:

        Ordering your own button from your DME is really pretty simple. Mini-one and Mic-key both use the same sizing with two numbers: the tube diameter (measured in F) and the stoma length (measured in cm). Both numbers are written in bold on the button itself (around the port). Just get a Mini-one balloon button kit with the same two numbers, and you’re good!

        https://www.appliedmedical.net/enteral/minione/balloon/

        I considered Compleat, but never got around to trying it before my current diet, which I’m pretty happy with and hesitant to mess with. I’m getting ~40% of my calories from Jevity, ~50% from Vivonex TEN, and ~10% from complex carbohydrate powder, plus a powder vitamin and assorted additional supplements. So a protein/carb/fat breakdown of ~15%/70%/10%. I have spreadsheets mapping it all out.

        Let me know if you want more details about either.

        Kelly:

        Thanks for the recommendation; I’ll look into it. I’m curious, but I hate to mess with my diet when things are going okay. BTW, I’m not philosophically opposed to pumping myself full of “chemicals” vs “natural” stuff; I just try to find what works best for my body. Better living through modern chemistry!

        • #13897
          DeAnn R
          Keymaster

          David, I’ll probably end up ordering the mini-one if this formula change doesn’t correct my issues (and I’m not confident it will.)  Just hate that a person has to strong arm the system to get decent options.

          If you don’t mind my asking, how did you come up with your current diet?  The protein/carb/fat ratio look like more of what I’m aiming for.  Funny you mentioned spreadsheet, I just made my own comparing the options the dietitian gave me.

          Kelly, the Real Food Blend looks good too.  I’m glad there’s actually options.

          • #13904
            David Z
            Participant

            Heh, I’ve grown to expect to have do all the research/work for my medical stuff, and just tell the doctors what to do.

            I ended up on this diet after reading suggestions on the AA Diet website & Facebook SMA Diet group, researching general nutrition deeply, and trying a few ratios out. It’s not the orthodox AA Diet exactly, but I think it incorporates the major ideas, while being much easier to mix up & feed with. Mostly I just felt good enough that I didn’t feel like changing more.

            Be warned that you need significant vitamins & minerals supplements to be balanced. A great site for that is:

            https://www.completefoods.co/

      • #13907
        Kelly Miller
        Participant

        That’s why I liked the Real Food Blends so much. I still needed a multivitamin, but I didn’t have to make sure I got significant vitamin & mineral supplements. I’m not into the whole spreadsheet & dealing with taking tons of things every day. I already have to do quite a few pills, including pain meds, each day, so anywhere I can cut down is good. My husband works from home & spends a lot of time taking care of me which means I have to streamline everything. Since he’s my own me caregiver bc I don’t qualify for any kind of assistance, I don’t like having to add new things on top of new things for him to do.

        I have definitely gained a few pounds on this new formula. I couldn’t fit into a pair of pants yesterday that used to be too big on me. That’s good though bc my doctor had asked me to gain from my usual 50-55 lbs. up to amount 65-70 lbs. to start. I think I’m going to stop there as I don’t want to have to buy a new wardrobe to then not fit in my clothes the next time I spend a week in the hospital! All in all, I know to gain is for the best.

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