[halsey-blocher]

For me, the fact that it’s an oral medication is huge factor! Spinal injections are out of the question for me, but I shouldn’t have any problems with an oral medication. I can just put it through my feeding tube (and therefore also don’t have to worry if it tastes bad). The other big factor in my decision to pursue it is that it doesn’t seem to have any negative side effects. I’ve asked everyone, and no one knows of any.

[halsey-blocher]

I am fully intending to start on Risdiplam as soon as possible. My doctors are not anticipating any problems getting it prescribed for me. (Knock on wood.) My hospital is compiling a list of patients who weren’t able to receive Spinraza to get them on Risdiplam quickly. It’s not a long list, but I am on it. So far, I really haven’t heard any negatives, so I’m very hopeful.

[halsey-blocher]

Crystal, this is a great question! I don’t yet have children (I don’t plan to have biological children, I’d like to adopt at some point). But I’ve met many woman with SMA who have, so it’s very possible. There are a lot of considerations. Like Tracy said, any children you have would at least be carriers, and could be affected by SMA if the father also carries the gene. But it sounds like you’re okay with that possibility. Another thing to consider would be the affect of pregnancy on your body (and the baby). I would recommend consulting doctors who will closely monitor you during and after pregnancy. (OB/GYN, and probably a pulmonologist and cardiologist, at least.) You seem strong enough to be able to have a baby without a lot of trouble. I’ve actually met a couple of weaker type 1s who have had children, which blows my mind. And if you decide that you’re worried about the affect on your body, you could look into having a surrogate. The last thing I would recommend is making sure you have a good support system. It sounds like Tracy knows way more than me about support systems and assistive programs, so I’m sure she can give you a lot of great advice about that.

[halsey-blocher]

Like you said, there’s probably not much to do that we aren’t already doing. We’re just really trying to avoid touching anyone and hand washing is going into overdrive. I don’t honestly know what I would do if my caregivers got the virus. Particularly my mom. She’s one of the only people that knows every part of my care.

[halsey-blocher]

I’m actually not sure if venting works with an ng tube. With a surgically placed tube you attach a specific extension that goes a little deeper into the tube to release air. But there could be a way to do it with an ng tube that I’m not aware of? I hope there is.

[halsey-blocher]

Being spontaneous is hard for me as well, but it is so much fun! There’s a Starbucks down the road from my house, and sometimes I’ll randomly decide to walk there and sit on the patio with my drink for a bit. Or sometimes on the weekend, my mom and I will decide to go do a bit of shopping. Usually, that’s about as spontaneous as I get.

[halsey-blocher]

My spinal fusion combined with the severe curvature of my spine ended up completely preventing me from receiving Spinraza. This is the column I wrote about it a while back for anyone that wants to give it a read. I wasn’t willing to try some of the riskier approaches like this neck method that Shane uses. I ended up deciding it would be best to wait and see what other treatments would become available. I’m very excited about the possibility of Risdiplam. I hope everything goes smoothly for Shane.

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For accessible trips, I highly recommend Virginia Beach! The city really prides itself on being an accessible destination, and it shows! My favorite part is the boardwalk. It’s a 3 mile concrete boardwalk that spans the length of the beach, and there are smaller wooden boardwalks that branch out onto the sand. You can also rent free beach wheelchairs that will be brought to your hotel. For kids, there’s a wheelchair accessible beach playground. Almost all of the hotels, restaurants, entertainment are accessible. We always drive so I’m not sure what transportation is like, but most things are in walking distance. If you’re into music, there are usually several stages with live concerts on the beach every night which is pretty cool. And one thing that I personally love is that there are smoothie shops on every block. I can’t swallow thinner liquids so I mostly drink smoothies or other frozen drinks, so it’s great to have such easy access to them!

[halsey-blocher]

I definitely think that’s a possibility. I was always a very mature child, and it’s a trait I often notice in other children with SMA.

[halsey-blocher]

I forgot about footrest rides! That’s a great idea! My niece is a little too big for it now but we used to do it all the time. One time she rode through the whole zoo on my footrests. And when they get bigger most chairs have places on the back that are suitable for standing on. I’ll have to try that with her soon. My brother did it all the time when he was little.

[halsey-blocher]

I also have several long distance friendships. My best friend lives in TX, and I have several other good friends in other states. Texting and Facebook are so important for maintaining these friendships. I guess I could always write letters (and do sometimes) but technology makes things so much easier. Of course, in person visits are always the best, but having easy ways to communicate is way better than nothing!

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There’s definitely a lot of people with SMA who live with they’re parents. Especially people in their 20’s. But I can understand why not everyone would want to. I love my living arrangement, but everyone is different.

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Here’s a new one that I discovered this weekend. While my niece was over we found an old pack of glow sticks that worked and she took to dropping them off the second floor landing and I would give her a score out of 10. I had to give her 9 because she almost dropped a few on my head.

[halsey-blocher]

My niece loves when I let her play with my old toys. Most of it is too hard for me to play with now, but she likes talking to me while she plays with them. She also likes playing doctor. She’ll get out all of my stuffed animals and dolls, and I’ll give her one of my nebulizer masks to give them breathing treatments and a medicine syringe for shots. (I love her but I’m never letting her give me a real one.) We also sometimes play dominos or do crafts at the table. She’s happy to help move game pieces for me, but you have to watch where she’s putting them. She’s sneaky sometimes.  And she likes driving match box cars and trains around on the base of my chair. Like DeAnn said, the important thing is just that you’re there. They’ll always remember that.

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I’m pretty sure most people with SMA have had at least one brush with death. Mine was actually exactly 9 years ago today. I’d already been in the hospital for a little over a month. I had the flu and pneumonia, plus I picked up a staff infection at the hospital. It was bad and I was so sick that I honestly can’t remember most of it. And of course it all happened during one of the worst blizzards we’ve ever had. The fire department had to dig us out of the house so that the paramedics could get to us. But what happened on this day, I clearly remember. It had been decided that I was finally strong enough to be extubated, and switched back to my bipap. I remember being taken to the OR. They were using an ambu bag to help me breathe all the way there, but weren’t giving me frequent enough breaths, so I was trying desperately to suck in some air on my own too. Not sure why I remember that bit so clearly, but I’ve never forgotten it. I remember blacking out as they were putting their gowns on. I don’t remember any of what followed since I was unconscious. I know that I coded twice. They had to do an emergency tracheostomy surgery. The grace of the Lord is the only reason I survived. My family never left my side, and eventually I went home. It was a long and slow recovery. The whole ordeal has had huge impact on all of our lives. I’m very thankful I’m still here. It’s truly a miracle.

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Glad to hear you’re starting to get adjusted to your new chair! It’s definitely something that takes some time!

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This time of year definitely gets frustrating. It’s hard to stay in so much, but getting sick is simply not an option. For me, Turnstone is a great solution. I know that everything is cleaned thoroughly and frequently, and there are good sick policies in place that are always enforced. Additionally, the nurse there always lets me know if there have been any reported flu cases anywhere in the building. If there are, I take week off from going, and then check in with her to see if things have improved or not. It’s one place where I generally feel safe during the winter, and it helps keep me from losing my mind due to lack of social interaction. And like you said, lots of hand sanitizer!

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I got mine about a year ago and loved it! I’ve used most of the things included in it, and I think it’s really great that they’re trying to find more ways to support Adults with SMA.

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I do a bit of both. I prefer actual coloring books. I look for ones that are small and pens or pencils that are vibrant without applying a lot of pressure. Even so, it can be tiring, so I also have a color by number app on my iPad. It’s called happy color. I like it because it has a wide variety of pictures and, unlike a lot of similar apps, they’re all completely free.

[halsey-blocher]

That’s awesome! And the picture is super cute!

My go-to for relaxing is almost always books. I love being transported into another world in a good story. I’m also a really big fan of adult coloring. If you like doodling, you might want to try it.

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Thanks guys! This was a really fun one to write. Sadly we got two inches of snow the day it published and another two last night, but it was fun while it lasted!

DeAnn, wooly bears are actually really easy to guide in whatever direction you want them to go, so you don’t have to worry too much about them ending up in your sleeve! 😂 They’re a lot of fun, but not everyone cares for caterpillars.

Alyssa, beaches and coffee shops sound like perfection! I might have to join you for a day of that sometime!

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Crystal, that’s really unfortunate that your aide did that. That’s just not right, and I will never understand why people do things like. While most people probably have experienced situations that are that extreme, letting people can cause us to get hurt sometimes. It’s one of the biggest downfalls. But when you find good, trustworthy people, those relationships can be extremely valuable. I can see why your mom worries about it though.

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It’s sad that so many agencies discourage these connections. I understand that not everyone wants to have friendships from their caregivers, but it shouldn’t be frowned upon. One time one of my former agencies sent a reminder out to all the staff reminding them not to call their clients pet names like “sweetie” or “honey.” I thought that was pretty ridiculous. It seemed like they wanted people to act more like robots than caregivers. I’ve developed really close relationships with several of my caregivers (past and present), and I’m really grateful to have them as such important parts of my life.

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The relationship that Kim and I have is definitely very unique. I can understand why people might not want to become so close. In other situations, it’s ended up causing me a lot of heartbreak and I’m generally somewhat guarded with my nurses for quite a while. There are only a few that are anywhere near being as close to me as Kim.