Robert Stump

Bowling is pretty easy to adapt, using just one of those stationary rails or getting one that can attach to your wheelchair.  The off-the-shelf design of the Ikan Bowler comes to mind, or you can do what I did and hire a local welder to create your own.  I have been bowling competitively in a standard weekly league for over 20 years, and my h…[Read more]

With enough ingenuity, many other sports can be adapted.  I’ve always had dreams about making a device to allow me to play billiards.  I have no doubt someone could easily design a variably powered shooting stick attached to a wheelchair (preferably one that can elevate).  Likewise, I remember playing a version of HORSE with my brother and da…[Read more]

We have had it here in Ohio for most providers for over 2 years.  It is a pain, and seems like one more unnecessary step to discourage workers from entering this field.  I pretty much manage the billing for all of my providers anyway to keep them happy and free of the nonsense, so helping each of them set up EVV and helping manage everything for t…[Read more]

Actually, even better news.  Google went ahead and released this new functionality for any phone running Android 6 and above.  It won’t work as smoothly on older hardware, but I just tried it out on my Moto X4 running android 8 and it looks like all of the functionality is there.  Of course, my voice isn’t near as clear as it needs to be to ma…[Read more]

DeAnn, that is the Micro Light Switch, one of the most sensitive switches out there.  I love those things!

Sign me up, I can’t wait.  I even already asked my neurologist if there is any way to get on top of the list when it becomes available 🙂

Wow, I hope you are negative and that you and your mom remain safe and well.  It seems like it is everywhere now and I have had several scares with my providers.  My main aide was definitely exposed a few weeks back because both her sister and her 2 nephews tested positive, and she was around them constantly without taking any precautions with t…[Read more]

I’m in the same boat, and for me feels like we are getting so close to being able to take the vaccine, and it would be terrible to get it now after working so hard to stay away from it!  I know if I would get a bad case of it I would have a hard time, but honestly I’m more worried about my parents catching it because they would need to help take…[Read more]

In a different forum, someone suggested the Vectario Hovergrip HGRPV26 which is available on Amazon.  It is super flexible to attach to just about anything, and superstrong so it doesn’t just fall down after 5 minutes.  The only complaint might be it isn’t long enough to get the phone exactly where you want it, but in the comments section the c…[Read more]

I would choose the money (with a caveat). Like most financial transactions like this one would need to estimate how much money over the remainder of your lifetime is most likely to be spent on one of these new drugs, then a formula would need to be developed to offer the recipient a one-time cash payment in lieu of the treatment.

For me, I don’t…[Read more]

Any chance of getting these included on Alexa’s Flash Briefing?  That is what I listen to every morning and I would love to add it to my to my feed!

I wasn’t able to join in today, I hope to catch it when it is posted on demand.  My questions include potential long term issues we don’t know much about (retina damage), specific details on specific drugs/foods we need to avoid when on Evrysdi, and please give us some clarity on male infertility.

I have been fighting with my neurologist at OSU since March to try to get me on it, but it’s like pulling teeth with him.  First of all he had never heard of the EAP, and even after I explained what it was and gave him the contact another few months went by and he then claimed that it is a much lengthier process to be approved than expected.  S…[Read more]

I’m going to follow this thread because I have so far only used android and Windows products, and I am curious if I am missing out on important features lacking in the ones I’m using.  I know switch access features are way more expanded and useful in Apple devices, but I would like to know, for example, if an Apple TV is able to be used entirely…[Read more]

This choice is crystal clear for me, Risdiplam.  I have purposely held off going down the Spinraza path (in hindsight, probably not the best idea) seeing Zolgensma so close to the horizon.  When that failed to be approved for adults, Risdiplam was then just over the horizon, so here I am waiting years and years for that horizon to finally a…[Read more]

Those are 2 important topics you brought up, like you I am getting more nervous now that my caregivers are doing more out and about in the community, and I just know eventually one of them is going to catch it.  Not only will I be without care for however long the recovery is for them, but the risk is very real of them bringing it to me.  Can’t s…[Read more]

Everything in our lives must be planned.  How different it must be to not think one tiny bit about the “task” of getting in bed tonight.  I have no idea what it must feel like to just go lay down and start to fall asleep the moment you are ready.

I tend to have lots of political discussion with my aides, but I try to come at things from angles that aren’t particularly easy to see what point I’m trying to make.  I welcome lots of viewpoints, though most would understand which way I lean politically.  I don’t mind engaging at all because I don’t get angry and I honestly do understand where d…[Read more]