deann-r
Forum Replies Created
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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.
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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!
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Good to hear from you Adnan! Relationships sure can be tricky, especially when one party wants to keep it in the friend zone and the other might want more from the relationship. Guess I tend to automatically assume I’ll be friend zoned, so I just go there with friendships.
What do you guys think is more common, relationships where both parties are disabled or where one party is and the other is not? Just curious.
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Although I’m happy to see more disabilities portrayed in film and television in recent years, that’s all it seems to be is a portrayal. With all the talk of diversity I want to see it. Not just in the show or film either, although having disabled actors portray characters would be fantastic. I also want to see inclusivity with audience members, with presenters at the award shows, heck even with those who conduct the red carpet interviews. No fanfare needed, I just want to see it.
On a side note, I did learn something cool about one of my favorite shows, The Walking Dead. It was mentioned they hire individuals who are amputees to play some of the Walkers who are missing limbs. Maybe that’s a start? Next I’d like to see an amputee play a lead character. I have it all plotted out in my head.
Another script I want to revise is the new Rosanne. With all the diversity they did include it left me wondering, how would they cope if one of the grandchildren had a disability? I know how a family would cope, I’ve lived it, but it would be an interesting dynamic to show.
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It’s really a personal choice. I had an agency in college that provided an aid for personal cares. I had friends help out with small stuff. Seemed to work well for me.
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Oh yes, I think everyone has a couple stories that stick with them. Mine takes place in a grocery store where I was shopping with my mom. All of a sudden this lady rams into me with her cart and says, “Watch where you’re going!” At first I was startled, but when I looked up at this person I realized it was a family friend just joking around. It’s actually refreshing when people feel comfortable enough to joke around, but boy did she get glares from other shoppers. Every time I see her she says she won’t do that again.
What does annoy me is when someone stops in front of me causing me to bump into them or trips over me and then give me that look like it’s my fault. Being Minnesota nice I usually say sorry, but mumble something about them suddenly stopping under my breath.
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College definitely takes a lot more planning when you have a disability. Fortunately my campus was pretty accessible. Quickly I learned which elevators were the easiest to use and what routes to take so I wouldn’t have to struggle with doors. Class schedules had to be planned around my PCA schedule. My modified book-bag sat on my feet so I just asked the nearest classmate to pull out the materials I needed. Usually I just used my wheelchair to turn a desk around so I could use it. I wasn’t a cafeteria fan, so I lived on microwave meals, deli sandwiches and of course pizza at least once a week.
One suggestion I have is that if you’re at all considering a service dog start the process early. Unfortunately I was on a waiting list for my entire college experience, and it wasn’t until after college I was partnered with my SD. It would have been so helpful to have him during those college years.
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Great opportunity, don’t miss out! An Amazon Echo Dot is a great way to test the waters when it comes to smart home devices. Why buy one when you can win one! Already own one? You can always put one in another room and use them like an intercom. Commenting on the forums is easy with lots of great topics to discuss. Not finding one you’d like to weigh in on? Create your own! We’d love to hear from you, and who knows you could score your very own Echo Dot in the process.
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Dating has always been pushed to the back burner for me. I’m not opposed to it, I just haven’t made it a priority. At this point I wouldn’t know where to even begin. Never liked the bar scene, online services don’t appeal to me either. I love hearing others stories of finding love though, or even misadventures. They provide a great learning experience.
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Have to say I’m a bit old school when it comes to this topic. Most of my classes were on campus, although I did take a couple online for convenience. It just seems I retain the info better when I’m in a classroom setting. I definitely tried to group my classes together to make the effort of getting to campus worth while. College was my first experience with independent living, so I’m glad I pushed that comfort zone.
Did you have note takers? I never did, but struggled to keep up sometimes. Wish I would have had my service dog in college too. Countless pens and pencils were lost to the halls of SSU.
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Survived another holiday! Well, I can’t say that for another week or however long it takes for the incubation of a cold to pass. 2/3 of my family have some variation of a cold, and we decided to play Telestrations. It’s a combination of the games Telephone and Pictionary. Fun, yes, but I can’t help thinking of germ exposure as each notebook gets passed down the line. Hopefully the hand sanitizer killed 99.9% of the germs and the other .1% was not contagious. If you are looking for a family game this is a fun one. You don’t even have to be a good artist because the worse you are the funnier the game becomes.
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From the sound of it, many diagnosis stories do have a lot of similarities. For my parents, the alarm bells rang when I wasn’t standing up or walking. Mom knew something wasn’t quite right and had to convince the doctors. My older sibling reached all of those milestones in a timely fashion. Finally after 3 visits they conceded something was wrong, so sent me to a specialist where a muscle biopsy confirmed SMA. Back in the early 80’s that’s how they did it.
Of course their reaction was shock, but also a little bit of relief. Looking back it explained a lot from my “snake” crawl to my chronic illnesses. What was difficult for them was if they should still consider expanding their family. Having two girls, they had planned to try for a boy. They decided to roll the dice. When my little brother was born my parents were told he was perfectly healthy. At a few months old the doctors changed their tune when my brother developed an abdominal hernia. He too had SMA. Despite the hardships, my parents wouldn’t have changed their decision.
Stories are important to share not only to connect those of us who have SMA, but also for parents who have or are going through some similar situations. I’d love to hear your story!
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We only travel by van as well. We recently downsized from a full sized van with an automatic lift to a minivan with a pull out ramp. It was also a change as we went from side entry to rear entry. I’m liking the rear entry. Also less to go wrong with a non mechanical ramp. Was nervous if we could fit everything in the minivan because we take my hoyer lift and commode, but we squeezed it all in.
Hotels are tricky as the beds seem to be blocked underneath preventing the hoyer from going under them. Not quite sure what to ask to clarify that when we book a room. Does anyone else run into that issue? Hotels definitely don’t have the comforts of home. We usually bring a feather bed too.
I do envy those who can travel.
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So far I’ve had five injections. No major improvements, however I have had subtle gains. More sensation in my muscles, and my upper limb scale had a 5 point improvement on my last physical therapy assessment. It’s definitely a slow process. I’ve begun occupational therapy in hopes to see improvement. Thanks for asking. Let me know if you have more questions!
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Kudos to you David! I started off in computer science, but couldn’t get past a programming class, so switched to business. Certainly am glad to be living in the technology era. What voice activation feature that you’ve come up with do you like the most? Currently I use my smartphone to control the TV, but debating if I should invest in the technology to be able to do voice control. Keep up the creativity!
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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.
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Dan, My last urine test did show the protein level had increased slightly, but nothing significant. The doctor didn’t even mention it, I was just comparing lab results. As far as spinal fluid, I don’t get results from that, so couldn’t tell you. In my mind that tells me Spinraza is doing what it’s supposed to. Fingers crossed anyway. Thanks for asking, and don’t hesitate asking more questions!
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Was looking for a good movie to watch this weekend. Will definitely have to check out Passion Fish. Thanks Kelly!
Has anyone read or watched Me Before You? I read the book and watched the movie. Sounds like a similar concept as the one you recommended. Not my favorite although the book was better than the movie. Just bothered me that he could never come to terms with his disability. Maybe it’s different when you haven’t grown up with it your whole life?
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Dennis, glad to hear you’ve inquired about Spinraza. Good news, Spinraza is actually approved for adults already, so no trial necessary. If your doc is willing, he should be able to become an administration site. I would suggest maybe having them contact Biogen, the pharmaceutical company. Also, here is a link to sites that are administering Spinraza http://www.curesma.org/spinraza/sites/ It helped me out when I started my journey. Best of luck, and keep us posted! Please ask if you have questions along the way.
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I applaud your ingenuity. With the right brains behind it, technology sure can do amazing things. What’s next on your list of innovative technology?
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Sounds like a great plan for your son. I love that these days you can almost customize your education to what suits your needs.
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Thanks for asking Dan. As far as obvious improvements I haven’t seen anything really significant. Sometimes when I pick something up it seems lighter than I expect it to. Friends have mentioned I move my “bad” arm more and sound a little louder. Even though my pulmonary function test didn’t show improvement I feel my cough has more force to it. So, subtle things. My calves have been cramping a bit too. Nothing ultra painful, but noticeable. I take it as them waking up.
I encourage you to look into Spinraza. From what I’ve heard many type 3 individuals have experienced increased endurance and energy. Someone described it like sandbags being lifted off their legs. Seems results vary from person to person, but positive from what I’m seeing.
Feel free to ask any questions. My next vlog will detail the process I go through.
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I’m hoping over time it will be more readily available around the world.
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Keep us updated, and best of luck on your journey. Don’t hesitate to ask any questions!