How Having SMA Friends Has Helped Me

[kelly-miller]

Much like Kevin, I did not have SMA friends when I was growing up either. My mother was always trying to encourage me to make friends at the annual MDA summer camp but I didn’t feel like I had anything in common with them. It seemed most of their parents kept them sheltered and extremely dependent. I think they were worried their kids would get sick or hurt themselves or maybe even get their feelings hurt. These parents wanted to cushion their children from any kind of pain, physical or emotional, that they weren’t already experiencing. My parents, on the other hand, were constantly pushing me to be independent. I went to Easter Seals camp for two-week overnight sessions beginning when I was 6 years old. All the other girls in my cabin cried every night for their mommies but I was having a blast being away from home! I love that my parents made me do things out of my comfort zone. This came in very handy when I went away to college & lived in a dorm with a PCA for the very 1st time. Some of the other disabled students didn’t even make it past 1st semester but I was zooming along, making friends, doing well academically, on my road to having as normal of a life as possible. I didn’t see any reason to include SMA people, or anyone for that matter with a disability, in my circle of friends.

Then, 30 years later, I ran across the Living with MD group on Facebook. I joined it just to see what was going on. There were over 1000 members and I was astounded to know that a large number of them were people with SMA. Suddenly, I was reading posts about things I had questioned over my entire life. I was seeing comments about the same struggles I had and discovering solutions for some of the problems that had plagued my life since childhood. I decided to reach out to a couple of people who had commented on one of my posts. It was the start of some very good friendships! I suddenly had people who understood all the hardships I was going through. I also had new ideas of how to get around problems and how to resolve issues. I wouldn’t have even known about the Mickey feeding tube or the SPC! It was one woman with SMA in particular who encouraged me & motivated me to change my long feeding tube to the Mickey and it was the same woman who talked me into the SPC. Both of these things have revolutionized my world! I have even more independence now and my husband isn’t so stressed from the issues that came with not having these 2 things. Now, I don’t know what I’d do without these people in my life. We’ve gone out to dinner and visited each other at one of their houses.

I’m very happy to include SMA people in my life now and realize the benefits, on both sides, for these types of friendships!

[deann-r]

Kelly, sounds like we have a lot in common.  When I  was growing up social media didn’t exist, and there just weren’t a lot of others, if any, that had SMA in my area.  Of course I did the camps.  They were fun, and gave my parents a break, but I never befriended anyone.  College was my first real taste of independence and I never looked back.  It was there I made some longstanding friendships with other individuals with disabilities.   Certainly it is enlightening gathering all the tidbits of knowledge from everyone.  Especially now with social media.   Speaking on your comment about many kids being coddled, I recently made the comment to my mom that I was glad she wasn’t like some parents who shelter their kids.  I have a friend whose parents seem to emphasize what she can’t do instead of pushing her to see what she can.  I’m actually amazed she even went to college.  Funny part is, she has way more mobility than I do.  I try to encourage her to live outside her comfort zone.

If I had had more SMA friends I might have figured out how common feeding tubes were.  It wasn’t even on my radar until a stay in the hospital ended with me getting a feeding tube.  Still not a fan, but sure glad I didn’t settle for the irritating long tube the docs had me almost convinced was my only option.  Have you heard of the Mini-One?  I was thinking about inquiring about it.  Do you change your Mic-Key at home?  As far as the SPC, it’s caught my attention, but not sure I’m ready for that.

Thanks for posting.  Please continue sharing, we love hearing from you!

[kelly-miller]

I have heard of the  Mini-One  DeAnn. It is very cute but, to me, it doesn’t seem that much smaller than a mic-key. I got my mic-key last September and it gets changed every 6 months. I saw where somebody only changed theirs once a year but that would make me nervous because the balloon loses water over time. A whole year could cause it to lose a lot of water. It could also cause the balloon to break down because of a year’s worth of stomach acid & food. I just feel like 6 months is the right amount of time.

I was a little anxious the 1st time we changed it. I’m always anxious about everything ha-ha. But, I found some very simple directions online & I saved them in my documents. Before my husband did it, I pulled up the directions & went over them a couple of times to make sure I knew exactly what we were doing. I got him to lay out everything we needed on the bed & I sat in my chair next to the bed. I tilted back to a comfortable position & I told him what to do step-by-step slowly. He did each step as we went along, then I would read the next step. Doing it & me knowing what we were doing made it less nerve-racking. The whole thing was extremely easy. He did have to pull just a little to make it come out & he had to push a little to get it to go in, but, once it was past the stuck part, it went very smoothly in and out. I was bummed I had not done it in front of a mirror because I wanted to see what the hole looked like in my belly. I wanted to know if you could see into my stomach! 😁 My husband said no, of course not but I still want to see what it looks like. So, come September, I’ll be doing it in front of a  mirror.

If you decide to change it yourself or have somebody do it for you, make sure you get some kind of lubricant. It has to be water-based, otherwise, it will cause the balloon to deteriorate faster than 6 months. I bought individual little packets on Amazon pretty cheap. They all say whether or not they are water-based or petroleum-based. In other words, you can’t use Vaseline. I’m glad I checked that because I was thinking that would be a good thing to use. The packets made it easy by being able to tear off the end and stick the new mic-key into the packet, balloon end 1st. I got my husband to do that after we inflated the balloon on the outside of my stomach to check for leaks. That way it was ready to go & had lubricant already on it. Plus, it was keeping it somewhat sterile in that little packet.

One of the things the manual that comes with the mic-key says to do is check your water level in your balloon once a week. So I was gung-ho my 1st week & wanted to follow every direction to the letter. We did it just like it said but that procedure made me a little more nervous because I was afraid that taking water out & putting it back in might hurt the integrity of the balloon. It just seemed like doing that every week would weaken the material it’s made of &  cause it to get a  leak. I happened to talk to a friend who has had her mic-key longer than me and she said she never checks her water level! Really? Okay, I’ll give that a try. I didn’t check it anymore until the 6 months were up and the water level was only down a couple of ml’s. We ditched that checking every week idea!

So, if I may ask, what is holding you back from getting an SPC? Are you afraid of something or do you think you don’t need it? I absolutely love mine! It’s kind of like a microwave… Once you have it, you just can’t imagine how you ever lived without it. It’s definitely cut down on bladder, kidney, & urinary tract infections. Before I got it, I was on Bactrim every single day as a maintenance dose because we couldn’t get the infections to stay away. I also retained urine in my bladder all the time (probably where the infections came from). I just didn’t seem to have the strength to empty it completely and thus, I constantly felt like I had to pee all the time. When I did sit on my bathroom chair (I only went to the bathroom twice a day), it would take me 30 minutes to be able to even start peeing! I don’t know what that was about except maybe it had to do with strength also. My SPC has changed all of these factors. I haven’t had but 2 infections, which is a tremendous improvement from every day. I am totally off Bactrim or any other maintenance antibiotic (much to the delight of my infectious disease doctor). My kidneys & bladder are so happy to be functioning normally, emptying completely, & not having to hold it all day. All around, I just feel better in the whole urological dept.

I’m sure you have questions about how it all works or maybe even logistical things, like where does the leg bag go and such. I would be happy to go over anything with you as best I can. Everyone is different, so I can only give you my experience, but I can tell you, other people’s experiences totally helped me when I was deciding and when I was getting ready to set it up.

This type of discussion is exactly why I’m happy to now have friends with SMA. One of my biggest fears is needing, at some point in the future, any type of breathing assistance. I currently don’t have anything – no BiPAP, no cough assist, no vest, nothing. Well, I take that back, I do have a nebulizer. Anyway, I’m scared to death of the day when I need something. I met with a new pulmonologist on Tuesday because I feel like I have to set up the doctor 1st before I can get any equipment. I wanted somebody I like to be onboard before it’s time to purchase equipment. She was extremely nice & helpful and thinks it’s time to get a cough assist to have for whenever I get a respiratory infection. Since this apparatus is the least fearful for me, I said okay. This will give me time to get used to it without being under the gun to use it for breathing! I feel like having people with SMA who have used these machines, and even ventilators will hopefully lessen my anxiety over the situation. Yet, another reason to be engaged with people who have, and understand, my disability.

Sorry, this is so long. I can be a bit wordy when I get on a “roll”!

[deann-r]

Last fall I got my cough assist. Since I don’t have a pulmonologist my primary doc prescribed it for me upon my request. The nurse didn’t even know what it was. It was very helpful during a couple hospital stays. Needless to say I’ve had to play around with settings, but a Facebook group steered me in the right direction. I’ve found I like a mouthpiece better than the mask, but it’s a personal choice. Maybe try both to see what suits you.  A bi-pap might be useful, just haven’t taken the plunge with that yet. It would probably require a sleep study or something like that.

Honestly I just learned of the spc option recently. I’ve never had trouble with uti’s or bladder issues. As with everything I’m sure it has pros and cons. Certainly something to keep in my back pocket for future options.  Thanks for sharing your experiences with it.

We probably could change the feeding tube ourselves, but so far we haven’t. Nice tips for if we do.  I’ve never checked the water.  One time at 4 months it was leaking abnormally a lot, so I had it changed and they found water was low. Otherwise I go 6 months.  May I ask what formula you use and kind of schedule you have for feedings (hate that term)?  As far as the Mini-one I’ve heard it’s softer, so just wondering if it would be more comfortable.  I tend to lean on mine.

Good luck with the cough assist.  If you have questions I’ll try to help.

[david-z]

Cough Assist: I’m kinda embarrassed to admit I’ve had one for 20+ years and never really used it. I have no idea what settings to use if I ever really need it. DeAnn, do you have any suggestions for a Cough Assist newbie?

[deann-r]

David, as far as cough assist settings I would just try it out and see what you feel comfortable with.  When I got mine home pressures were set at +15/-15 and it was way too weak.  Found out SMA protocol is +40/-40.  I’ve worked up to +35/-35 and am good with that for now.  Might bump it up next time I actually get a cough.  I probably should be using it every day just for the exercise, but I don’t.

Definitely going to ask about the mini-one.  I lean into mine with the way I sit, so softer would be beneficial for sure.  The mic-key is way better than what I started with, but nothing wrong with options!  How often does it need changing?

I’m sure I’d qualify for BiPAP, but think they’d want me to do a sleep study first.  Always concerned they’ll point out 10 extra things wrong with me and not address the reason I’m there.  Do you just use a nasal mask? One reason I’m hesitant is that during a hospital stay they had me using it with a full face mask and it was like I was getting blown away or something.  Did you get used to it quickly?

[david-z]

Thanks for the suggestions on the Cough Assist. It’s one of many things I probably should be doing but am not.

I believe the frequency of changing the Mini-ONE is the same as the Mic-key.

I did a sleep study before getting the iVAPS/BiPAP, but it wasn’t overly difficult. It showed clearly that the iVAPS mode (which I’d already researched and decided to pursue) solved my problems, while the standard BiPAP mode didn’t. Yes, I just use a nasal mask; like you, I’m wary of the loss of control with a full face mask. I got used to iVAPS surprisingly quickly: it doesn’t take long at all to feel natural, and soon it feels strange without it.

[kevin-schaefer]

David, the cough assist also took some time for me to get used to as well. My pulmonologist had to really bug me to use it. It was annoying at first, but I’m glad I did start using it more consistently. Even if you just do a couple sessions a day, it really helps reduce your chances of getting pneumonia or having other respiratory issues.

[david-z]

Mini-ONE: It is a bit smaller, but the major difference is that it’s made of a softer silicone, so it flexes more easily with your abdomen, making it much more comfortable. I noticed the improvement immediately, and there’s no downside.

BiPAP: Don’t wait too long. When I finally got an iVAPS (a fancy BiPAP) for sleep, it made an immediate, huge difference. Without conscious awareness, poor breathing during sleep was making it less than restful, leading to daytime fatigue and weight loss. And really, who doesn’t want to kick back after a long day, take a load off, and let someone (thing) else do the breathing?

[kelly-miller]

Oh, that would be great if you could help me when I get my cough assist. I guess whoever supplies it will hopefully show me how to change the settings but I can’t always count on that. You know how they are! I used one before but I think the settings were too high because I felt like it was trying to rip my lungs out of my body through my mouth! Your idea about a mouthpiece instead of a face mask is a very good one. They gave me the full mask & I didn’t even know there was a mouthpiece.

I use Jevity 1.2 as my formula. I had a different kind in the very beginning (can’t remember the name right now) but it really started upsetting my stomach. The Jevity has been great for the last 3 1/2 years. I’m not really on a schedule for my feedings. I do bolus feedings instead of a pump. I’m still able to get regular foods whenever I want, so I do my formula when it’s time to take medicine. I usually get it 1st thing in the morning (around 8), then again around 12, then again around 5, then again around 10 PM. If I need to take any other medicine in between those times, I always take it with a little bit of formula. Lately, they’ve been switching me around on my pain meds and it’s made me not hungry in the least for real food. I’ve just been having the formula. I’ve actually gained about 5 lbs. doing it that way – without food – which I’ve been trying to do for 6 months, with no luck. I guess eating regular food was somehow getting in the way of gaining weight from the formula. Maybe I’ve been taking more in because I knew I wouldn’t have food. Last night was the 1st time in a while that I’ve eaten food because they changed my pain meds off of the new one. I guess it was the culprit in the no appetite situation. The doctors (mostly my G.I.) want me to have 4 to 5 cartons of formula a day. I told her, no way, that’s way too much for me – I’m only 55 to 60 lbs. She said she would settle for 3/day. I just tell her I’m taking that much but I rarely have it all. Just can’t get my stomach to take that much.

[deann-r]

Jevity is what I use as well.  Sometimes I don’t think it agrees with my tummy. I do the gravity bolus feedings as well.  Maybe I just run it too fast?  From the start I was supposed to do 3.5 cartons a day, but right off the bat I scrapped the half.  Now I do 1 carton up to 3 times a day.  I cheat with real food on occasion as well.  Any favorite foods?

Again good luck with the cough assist.  It does take some getting used to.  I do like it better than the vibrating nebulizer thing they had me use in the hospital.  That was on the verge of a torture device in my opinion.  It was new and you could tell they were excited to be able to use it.

[kevin-schaefer]

Great discussion! Going back to what both of you said about other people with SMA being coddled, I’ve definitely seen that. I’m also very fortunate that my parents raised me just like my siblings and always pushed me to do the things I love and interact normally with other people. Something as simple as treating me normally and not sheltering me made a huge difference.