Hey Rachel, Lauren Bakken is Kinova’s full time family advocate and she works on appeals, including help with drafting the appeal letter. Contact her at lbakken@kinovarobotics.com. She should be able to help.

Thanks Alyssa. You’ll do fantastic

Thanks man

Thank you all very much. I’m glad to hear that my contributions mattered.

Hey everyone, and happy Halloween! I wanted to let you know that today is my last day as a forum moderator. I’ve enjoyed getting to know you all, and I hope I’ve provided valuable information. But the time has come for me to make a change. I might check in once in a while, but I won’t be very active anymore. I will l leave you with this.… Read more

Hey everyone! Happy Halloween to those who celebrate it!

Before you all go to your costume parties, check out my latest video here. In this episode of Ryan’s Robotics, I show you all how I use my JACO robotic arm to put on my hat and sunglasses. It’s a simple task, but it’s little things like this that make… Read more

Driving on rough terrain like gravel is always a challenge, but everything is that much tougher in the cold.

That’s a good point. There are people who genuinely just need to vent and receive support, and being met with something like “I’m worse off than you and managed to do X Y and Z”, just pours gas on the fire.

Hey everyone, here’s Kala’s newest column. She points out how unproductive it is to compare the severity of our disabilities, yet we do it quite often. Even beyond disabilities, it seems to me that it’s human nature to compare ourselves to others. Especially for those of us with disabilities, it’s a great way to feel discontent with our… Read more

This is something I’ve thought about. I have had some friends or family who have “left” in a geographical sense, but they didn’t abandon me personally. Life will inevitably force people down different paths, but it’s still possible to stay connected these days.

I quit doing anything for Halloween when I was probably ten, mostly because it’s just extremely cold, but I never cared much about it anyway. I don’t really have any stories lol.

I have to take stomach issues very seriously, as I can get metabolic acidosis, which has nearly killed me on at least a couple occasions. I don’t think that’s the case with you, but I would still be careful

Hey everyone, here’s Michael’s newest column. He writes about teaching his kids what a budget is. I don’t have kids, but I think it’s important for parents to teach their children the value of money. I think an allowance is a good method, whether the kid has SMA or not. What takeaways or questions do you… Read more

Hey Crystal, I’m so sorry this happened. As the others have said, I think it’s imperative that you have a way to call for help. At my house, I have a baby monitor so my mom can hear me. I call it a man monitor haha.

That’s pretty bad. I don’t like public transportation for many reasons, but sometimes there’s no better option.

I love the hot weather. It’s just that during summer I’m bored out of my mind. Fall for me is a good combination of having more to do, and it’s still not freezing cold.

Hey everyone, here’s Kala’s newest column. This one is a bit more lighthearted. She talks about why fall is her favorite season. I wrote a column last year saying the same thing, although for different reasons. She’s a fan of Halloween as well as the weather. What’s your favorite season?

The Most Wonderful Time of the Year

Yeah, we take great precautions to keep me from getting sick, but sometimes they aren’t an option. You gotta do what you gotta do.

I would probably just tell her that you really appreciate her service and want to keep her, but that going forward you require a bit more consistency. I don’t see anything wrong with that.

Dennis mentioned down vests which are great because they don’t restrict movement as much. I also have a Patagonia coat which I believe is down. I always struggled with coats , because they restricted me too much, but this one works.

Hey everyone, here’s Michael’s newest column. He recently received positive reports  on his kids during parent-teacher conferences. It’s great to hear that Ella is doing well both academically and socially. He has written about her hobbies of singing and songwriting before, and I think that has probably helped her in life overall. What are… Read more

It really all depends on what you plan to do with it. I like Macs in general, but they’re not good for gaming. As far as touchscreen, if you’re not gonna use it, I don’t see much point. But if it’s the same price, it doesn’t hurt to have an additional feature.

I believe this was the case with my left arm/hand. Since I was a little kid, I used it to drive, so it sort of sat there not doing much. Now it’s basically useless. On the other hand (pun intended), my right arm still moves decently, I guess because I’ve used it more.

This is certainly very true. Even though I’m not on spinraza, there’s just more of a general sense of hope now about SMA than there was before.

I totally understand where you’re coming from. Even though they likely have positive intentions, it’s still frustrating.

Hey everyone, here’s Kala’s newest column. She explains some of the ways she’s adapted to her new diagnosis of MS. I think her outlook on this situation is very admirable. What takeaways do you have?

I Am Adapting to My New Diagnosis

That’s honestly a really difficult question. I suppose we need to define what a “better person” means. Would i be as mentally strong without SMA? Perhaps not, because it has forced me to deal with many challenges. But even so, living with this disease does bring me down mentally. So I don’t know. Maybe a better way of putting it is that I’d… Read more

Did your brother have SMA?

A couple things stood out. One was that everyone agreed that they felt like a burden. I’m sure everyone with a disability has felt that way at some point. Still, I was a little surprised it was unanimous. The other was the question on whether you’d change your disability. I get that it is a huge part of who I am, but I’d like to assume that I’d… Read more

Yeah I agree. Our lives with SMA are already challenging, so we’re probably more equipped to handle additional diagnoses.

Hey everyone, here’s Helen’s newest column. It’s a difficult time for her, as it marks the 22 year anniversary of her son’s death. Being put on the wrong machine contributed to his downfall. This is a good reminder that when it comes to SMA, doctors often don’t know what to do. In my experience, it’s better to consult members of the… Read more

I ordered some equipment last night. Hoping it works

I struggle to eat physically, and I also have a small appetite, so it’s not really an issue for me. I don’t eat much by mouth. Most of my nutrition is from a feeding tube. I guess I don’t eat the healthiest food in the world, but I don’t eat enough for it to make much difference. I don’t like that eating is a struggle, but I guess in a way… Read more

I’m getting mine soon. Probably in the next week or two.

I completely agree! My faith is what sustains me. Life is extremely difficult, but I believe God left me here to finish running this race. When I sort of just want it to end, that is what lifts me up.

Hey everyone, here’s Kala’s newest column. She let’s us know that she was recently diagnosed with MS, though they’re not sure what kind yet. This is definitely never news you want to get, but it sounds like she’s taking it well. Has anyone else dealt with multiple diagnoses?

Add an MS Diagnosis to My List

That looks interesting. Thanks

Oh absolutely. I hate being anywhere except my chair

Yes. I’m more looking for the stuff to plug into it

I have a gaming PC available to demo, but I need to get the equipment first. Does anyone have recommendations for a mini joystick and a trackpad? Specifically a trackpad with buttons built in that could represent A B Y X on Xbox for example?

Hang in there friend! God bless.

Hey everyone, here’s Kala’s newest column. This was a tough read. She’s been going through some health issues, and to top it off, she was supposed to be on vacation. Getting sick is always terrible, but it’s even worse when you don’t know what’s going on and how to treat it. Let’s hope and pray she gets better soon! What are your takeaways?… Read more

I’d definitely suggest trying it out.

Sometimes subtle things can make a significant difference. Like I’ve noticed when I lay on my side, it helps to sort of straighten out my back a little as it takes some of the weight off my shoulder.

That stage of “ is this a t shirt or winter coat day?” is kind of annoying. Lately I’ve been making sure I have my vest on hand. I can get away with it and not a coat at this point.

Hey everyone, here’s Michael’s newest column. He talks about Ella’s recent ankle injury that she sustained on her adaptive bike. They had to make another trip to the ER to get it x rayed. Fortunately, it’s sprained, not broken. I’ve had ankle injuries myself, and they’re some of the worst pain ever. Have you guys had any similar… Read more

Sorry about that 🙁

Hey everyone! Hope you’re all having a great week.

Check out the latest episode of Ryan’s Robotics here. I talk about the Dynamic Arm Support, which is another device that Kinova Robotics makes. A Kinova rep spoke with me, and did a full demonstration of this device. It’s something that a lot of people here… Read more

Yeah I can’t really imagine doing the nasal tube, but it works for some.