[kelly-miller]

I am curious if the cream you’re talking about, Ryan, works for muscle pain, or nerves, or bones. Which is the worst for you? I have a friend who has severe fibromyalgia, and she might be really happy to try that cream if it works on nerves.

Looks like I’m on the other end of the spectrum from y’all regarding pain & the relief of it. I have chronic, extreme pain on a daily basis in my legs, hips, back. There are also various things that hurt periodically.

For the chronic pain, I started in 2008 with Lyrica & Tramadol. I was on that combination for 4 years until I decided the side effects were too much. I was experiencing memory loss (forgetting words in the middle of sentences), drunken feelings (not altogether bad but could be embarrassing at times), & swelling in my face, neck, hands/arms, feet/legs (making me look like I was a normal weight instead of less than most). When the doctor took me off, he neglected to tell me to taper down on my doses, and I suffered extreme withdrawal symptoms for several days.

In 2012, because I didn’t want those symptoms anymore, and because I was experiencing constant breakthrough pain, I decided to go to an official pain mgmt. Dr. in order to get serious relief. She gave me Hydrocodone at the 5/325 level first, then I was quickly moved up to 7/325 & finally 10/325 within a couple of months. I was taking that dose 5 times per day to keep the pain at bay. I continued with that level of care until around April of this year when I decided to go to palliative care because I was waking up with again excruciating symptoms. By the end of each day, I was in tears due to my legs & hips hurting beyond reason. Even staying in bed didn’t help alleviate any of it.

In April 2018, when I switched from pain mgmt. to palliative care, I was ready to try anything – even a bullet to the head at this point! This Dr. quite obviously knew nothing about SMA, nor did she appear to research anything about it as we developed our relationship. She threw several medicines into the mix and I was constantly trying something that didn’t work, then detoxing from that and trying the next thing. I went through gabapentin, methadone (yes, you heard me), amitriptyline, & I don’t even remember what else. After about 6 weeks of this and my pain getting worse by the minute, I told her I was done. I went back on my hydrocodone and threw everything else in the trash. Funny, but she was removed from that practice about 2 weeks after I left her.

By June, I wasn’t satisfied with going back to my hydrocodone, but I was agreeable to it because it was the only thing I knew of that had ever really touched the pain. For a brief time (maybe… 6 more weeks), it seemed to work a bit, and I wasn’t as desperate for a change. About the beginning of August, the pain started amping back up, and I started thinking about going back to the pain mgmt. doctor. Before I actually saw her, I put my head together with a couple of other SMAers who also had my type of disease and were experiencing the same horrible problems. One of them told me about extended-release Morphine. I was very skeptical in the beginning because whenever I received Morphine in the hospital, it didn’t hardly touch my pain, and I usually ended up asking for something stronger, like Dilaudid. She convinced me to at least talk to the Dr. about it to see what she thought. I did, and she said it was worth a try if nothing else. Anything else she could do would have made me so whacked out I wouldn’t be able to function in the everyday world.

I have been on it since August 2 and I’m here to tell you, this is the best medicine EVER! It’s a small pill that I have to swallow twice a day. I take Hydrocodone 3 times a day in between daytime doses of the Morphine. This is the new combo I’m using, and it’s working spectacularly. While I know it wouldn’t be the answer for everyone, I can say I am so happy now because I can participate in the real world instead of breaking down into tears in my bed all the time. I truly do not have hardly any pain at all throughout the day, and at night, I’m sleeping completely all the way through with no waking up to have my husband shift me or rub my legs. The only drawback to it is the having to swallow it. Even before I had my feeding tube, I had a psychological barrier to swallowing pills. Ha ha, seriously, I couldn’t make them go down. Even the small Sudafed’s with slippery coatings would come right back up into my mouth. These are a little bigger than that, and they have more of a matte texture. I’ve had to experiment with different foods to eat in order to push the pill down my esophagus. I’ve discovered that Mounds Bars (yes, the yummy coconut covered in dark chocolate candies) are the best because the coconut attaches itself to the pill & carries it right on down to my stomach! So, I also get a treat with my medicine twice a day. I don’t have any side effects from it – no drowsiness, no swelling, no stomach upset, no nothing. First medicine I’ve ever had with 0 side effects.

Sorry this is so long, but I thought it might help someone who is going through a trial & error time with their pain meds. There is hope for sure – don’t give up! You just have to keep trying to find the right thing for you.

[kelly-miller]

I think this guy has a lot of good info. He is primarily speaking about Type I but also has some input regarding Type II. I’m not sure he’s saying anything new that most of us haven’t heard. Being proactive people about our health issues, I think we already have broached this subject with our doctors. It seems helpful for those who may be new to advocacy for themselves & aren’t sure what to think about all the breathing issues.

If you go to the article, then go to Quality of Life in SMA Presentation, then click on Educational Resources/Cure SMA, you will see a whole list of links to different topics as you scroll down. These were actually extremely helpful – more so, I think, than his actual article.

[kelly-miller]

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.

[kelly-miller]

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.

[kelly-miller]

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.

[kelly-miller]

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?

[kelly-miller]

What the heck (because I’m trying to be nice) is a “Quality Adjusted Life Year”? Can you really put a price on that? This decision is ridiculous and basically says that certain people in the UK population are not worth helping!

[kelly-miller]

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

[kelly-miller]

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?

[kelly-miller]

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

[kelly-miller]

Lydia,

That’s cool that Dr. Bach treats you! Albuterol liquid med is different from the nebulizer albuterol. Not sure exactly how it’s different other than you take it either in your peg tube or by mouth.

That’s a bummer you can’t take hydrocodone because it helps me a lot – especially combined as a breakthrough med with morphine as the primary pain med. I’m sure people think I’m an addict or something but I don’t care because I hurt horribly without those meds.

Have you gotten any answers to your Spinraza question yet? I’m sorry I don’t know anyone personally who has gotten it. Have you joined the Facebook group Living with M.D.? It’s a private group that you have to request to get in but, as long as you have M.D., they will let you in. There are tons of people in there from all over the place who have had the injections – some for even over a year!

[kelly-miller]

Hey Lydia, I am about to be 55 (Sep 2) & I have very limited mobility in my arms. I would be a very high quadriplegic in that world. I considered Spinraza earlier in the year but decided I really didn’t want to chance the side effects. My pulmonologist put me on oral albuterol (liquid) just this past beginning of July. A friend of mine takes it & she has had a big increase in energy and stamina. Since I’ve been taking it, I’ve noticed quite a bit more energy (I promise my sleeping habits have stayed the same) and feel more peppy. I’m also on extended-release morphine with hydrocodone for breakthrough due to the severe pain in my hips, legs, & sometimes back. Even with all these onboard, the albuterol seems to be keeping me going & doing all the things I love to do! Since I just started the morphine, I’m not sure if it’s that, the albuterol, or a combination of both but my pain level has dropped dramatically! I can actually sit all day if necessary without so much as a peep from any part of my lower extremities. I don’t really care which one is helping it, I’m just glad it is!

Good luck with your decision on the injections!

[kelly-miller]

I’m actually very interested in the 1st & 3rd versions (the wc controlling the remote & the $50 option). Can you give me links to those David?

[kelly-miller]

David – Thank you so much for posting the link for the Bluetooth manual! I might not understand all of it but I think I can work my way through it. My main problem might now is that I have no access to the “Mouse Control” on my LED screen on my chair. I’ll wait until my husband gets home later to see if I can access it. I’m home alone & don’t want to make my chair go into “don’t do anything” mode while there’s no one to help me. 😛

DeAnn & Kevin – I ended up not going to the Abilities Expo. My friend wasn’t able to go because she had to tend to a pressure sore, so I decided to hold off on it. A couple of days before it I had smashed my hand into (or maybe I should say my finger) a parked car in a parking lot. Really stupid human error – didn’t make the turn sharp enough & my hand hit the car at just the right point. I completely tore off the fingernail & the next layer of the nail bed. It was pouring blood, needed bandaging & x-rays. The next day it was completely black and hurt so much that I thought my hand was broken. Thank goodness it wasn’t, not even my finger. Of course, there was nothing to do about the nail. I’ll have to wait for that to heal quite a bit before I can go without any kind of band-aid or bandage. It throbs occasionally but it’s a great story to tell people, especially the parts about the nail ripping off! 😰

[kelly-miller]

Kevin: thanks for checking on the Spinraza ad thing! I can understand it popping up the 1st time you login but not continually every time you go to a different page.

DeAnn: yes, it’s very frustrating. I’m sure I’ll figure it out myself. I’m just not interested in trying to call them again. I am going to the Abilities Expo this weekend in Houston. I try to go every year to see what new things they have. The Permobil people will be there (every year they are there), so maybe I’ll try to catch my rep when I’m there. He can’t avoid me if I’m right in front of him, right?! 😜

[kelly-miller]

DeAnn, one of my rules is DON’T get too close to a bonfire for too long! I had a severe case of pneumonia one summer when I was with my husband’s family and they decided to have a bonfire at night. I got close because we were roasting marshmallows. Little did I know, the smoke was going right into my lungs & setting up shop to hinder my breathing. It’s not noticeable when it’s actually doing it but you definitely notice a difference the next day. Maybe it’s from laying down to sleep for an extended period of time, keeping the smoke from getting out of there. I don’t know but it was terrible. I have been to one other bonfire that bothered me but I wasn’t as close, so it was a mild cold. It’s possible that that’s what made your throat scratchy etc. You can still enjoy the bonfires, just make sure you don’t get right up front & you turn your back on it periodically while you’re out there.

[kelly-miller]

I have Bluetooth on my Permobil F3 that I got 2 years ago this September. Unfortunately, the rep from Permobil would never call me back to tell me how to set up the Bluetooth. The DME kept saying he was supposed to come to my house to teach me & all I had to do was called to make an appt. I was very frustrated. Well, with life getting hectic & busy, I just gave up and put it down to a loss of money. 😢

I’m going to read the article you posted the link for and see if I can figure out what to do. I hope I can ask you questions if I need to. Thanks for putting this on here!

BTW Kevin, is there any way to keep the Spinraza pop-up from continuously showing up at the bottom of the page whenever we change pages? We already have the ad over on the right side of the page. Do we have to have it pop-up all the time? It’s annoying to have to keep x-ing it out to see that part of the page. 😮

[kelly-miller]

I have to say my 1st reaction to this quote was not a very positive one. Something about “and therefore, to be an inspiration” really rubs me the wrong way. While I can’t help if people see me as an inspiration, and I wouldn’t be angry at them for doing that, I definitely don’t want to get it in my head that being an inspiration has anything to do with my own purpose in life. I’m here to serve others but I don’t want that service to be an egotistical trip. When I start looking at it that way, I am heading for trouble.

Yes, I do agree that the suffering I experience (pain, loss of friends due to death, illnesses) because of my SMA builds my own personal character. My belief system is that of Christian and I know that God is always refining me, making me into more of what He intended me to be. It’s through trials & tribulations that I go through this refining process. I will never be perfect and God will not be finished with me until I meet with Him in Heaven. This is what comforts me whenever I’m having one of these experiences. But, I have to remember it’s all about Him and not me!

Interesting topic. Probably will start a serious debate. I guess in the end I agree with half of what Ryan says.

[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.

[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”!

[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!

[kelly-miller]

“Mindfulness – radical acceptance of the present moment.”

Wow, I probably could’ve used this phrase when I was in my 20s. I spent a lot of time during those years worrying about what people thought of me. I had tremendous anxiety about the way I looked & what I couldn’t do. Instead of enjoying the moment, instead of having fun with the people around me and doing the activity we were engaged in, I let the worry & anxiety totally take away any positive feelings I would have about whatever we were doing. My friends were always extremely accepting of me & my wheelchair, but I worried about all the other people, most of which I didn’t even know, who might think I was funny looking or that the wheelchair was a barrier. This kept me from thoroughly enjoying all the fun stuff we would go do.

Somewhere in my 40s, I gradually learned that this idea of mindfulness was a much better way to live than dwelling on my anxieties. I started recognizing my friends as people who really cared about me and who always made things accessible for me. I started seeing my own beauty, both inside and out. Doing this, taking each moment one at a time and being present in the moment, gave me a newfound confidence and even strength. It opened my eyes to show me that my life wasn’t as bad as I thought it was. I began to see the glass as half-full, instead of half empty!

[kelly-miller]

One of the movies I saw a very long time ago that is still a favorite of mine is Passion Fish. Not only is it about a woman who becomes disabled and struggles with the emotions that come from suddenly not being able to do things for yourself, but it also is about the caregiver who comes into her life at just the right time. They end up helping each other through a rough part of life. I liked the way it showed that we can help others as much as they help us. It may not be physical help but it’s just as important!

Kelly

[kelly-miller]

I have not heard of this happening before Esther but that doesn’t mean it wouldn’t happen for you. In fact, most of the doctors say that the stronger the pain meds (as in opioids), the worst effect it will have on respiratory systems. I happen to disagree with this because I’m on opioids daily for pain (the highest dosage amount) & it does not affect my respiratory at all. Whenever I’m in the hospital & have pain, I always get Dilaudid (which is very strong) and it never affects my breathing. I think doctors like to put things in a box and don’t want to discuss anything that goes against the parameters of that box. Unfortunately, most of us with SMA constantly  live utside those  boxes!

Where do you live? I’m guessing the UK but not sure.