Developing an app for ALS

[Jessica Johnson]

Hello! My name is Jessica, and my Dad was diagnosed several months ago with ALS. As I'm sure others have felt, I've had a feeling of helplessness, trying to figure out what I can do to help.

That being said, I am a senior in graphic design at the University of TN. In this last semester of college, I have gotten the opportunity to do a self-directed project on ALS. I want to make something that can actually HELP, not just something that is for a grade.

An idea I have is to create a phone app and/or tablet app that will be a resource for you from the moment you THINK you might have ALS till you have further progressed in the disease. I know that ALS is different for every patient, and there is a lot of advice out there that may not pertain to your personal symptoms. I want this to be something that is fully personalized to each person using it, and fully customizable to your preferences (such as privacy, and getting only the information that you're interested in getting).

Some ideas I have for the app is something that lets you track your personal progression, and according to that, the app will give you information based on your stage within ALS (such as how to talk to your doctor, tips/tricks for resources that can help with your symptoms, ways to prepare, support groups in your area, and lots of other things). My problem is that I think it's wrong of me to think I know what you need, when you know what would have been helpful to you at certain stages, or what would help you now.

So my question to you is, could you tell me what would actually be helpful to YOU in an app? And is this something you would actually use (If you think this is a dumb idea, feel free to tell me!) What types of information do you wish you could have now, or what kind of information/resources would you have like to have had sooner?

I appreciate your time in reading this, and want to thank all of you, because the information I've found on this forum has been very helpful to my dad and to my family.

 

[AfraidButNotAlone]

For me, an app that adjusts focus so I don't have to wear glasses.

 

[minnesota]

Hi Jessica,
I'm sorry to hear about your dad! Thank you for considering putting some of your energy to help PALS and CALS!

If I had an app I would want:
1. A link to the nearest ALS Assoc.
2. A link to this forum!
3. A way to see options for any particular ailment (for example....when my husband was Dx his foot slapped the ground so I could type in "foot drop" and get 'equipment options' to help---i.e. titanium AFO, plastic AFO, felt to ease discomfort, toe separators to relieve pressure on toes caused by curling)

A time consuming part of the disease is playing "engineer" and trying to figure out what people have used to help their loved one and relieve pain and discomfort. The ALS assoc gives the basics of equip, but this forum is invaluable in posting the true helpful hints. If I could put a list of those hints on an app, in one place vs. searching and searching I would be indebted.

Just ideas---everyone has different experiences and needs. thank you!

 

[ottawa girl]

Wow! Good for you - making the best of a bad situation. Bet your Dad is very proud of you!

I would love one stop shopping - right now we have paper file folders - it's a mess! An app that allows me to store everything in one spot would be ideal - from my ALS team members contact info, to caregiver schedules. Appointments, medical reports, list of my prescriptions ( handy for when paramedics request it LOL), copies of my power of attorney, instructions regarding my wishes etc. I'd like to store the information I find here on this site - Stuff I may need down the road, tips & gadgets etc. A place to store PWC serial number and technician contact information - so we are not having to search if we are in a rush. An app that others caring for me can share would be ideal.

I think you get the idea - I am very dis-organized ( and I procrastinate)

Thank you for this!

 

[minnesota]

Hi Elaine,

Lotsa Helping Hands dot com is pretty good if you're looking for an easy way to start pulling info together and coordinating help, appts, Rx etc... It's a website and not an App but would work if you're interested---At least until a cool app is developed! I've seen about 10-15 apps for caregivers but none that fit what you're looking for--at least based on my search! Go Jessica!

 

[minnesota]

Oops---I wrote too soon....found an app called Carezone---looks pretty nifty. Now if Jessica can take something like that and let us store all of the tips we get from the Forum in one place that would be fantastic!

 

[Ronnie& sissy]

Jessica, what you are trying to accomplish is amazing! I truly hope it works out,
Elaine has some great ideas, we could benefit from those suggestions as well, and maybe there could be a place within the app that has different symptoms and when you tap into a symptom it brings up ideas of how to deal with it. For example: needing a wheelchair, and under this tab you would be able to see suggestions of what to consider before getting one, and then possible websites to actually get one. Or; bathroom issues, tap in the tab and there are tips and tricks to help.
Hope it works out, I think it would be awesome!

 

[Jessica Johnson]

Thank you so much for your feedback! That is all very helpful. I have a lot of ideas for this app, but you all brought up things I hadn't even thought of! I very much appreciate it.

 

[Inventor]

A tablet app should have support for operation with the keyboard. For more than a year I was unable to use the touch screen but could still use those apps that could be used with the keyboard. Now I've lost the hands almost completely but can still navigate with arrow keys and enter. Can still use the browser that way but not many other apps since they lack keyboard support.

 

[adozi]

What a great project. Regarding Elaine's first suggestion, the best Tool I've found is the CDC ALS clinic locator. Neither the ALS association nor the MDA ALS division listed clinics in Kentucky, but i found some there. It lists non clinical locations, too.

 

[Jessica Johnson]

Thanks for the feedback! So is it easier for you to use a laptop/computer, or a tablet that has a keyboard connected to it? Which have you used?

 

[AfraidButNotAlone]

Thanks for the feedback! So is it easier for you to use a laptop/computer, or a tablet that has a keyboard connected to it? Which have you used?

For me typing is VERY difficult on both a tablet and laptop

 

[affected]

my PALS uses a switch on an iPad - so no typing at all

 

[tdamess]

good thinking , I think it would help many

 

[Inventor]

I have used a tablet with a keyboard dock when sitting on a couch, but most of the stuff I'm now doing with the desktop and eye gaze. Still able to do something with the tablet too, but am practically limited to the arrow keys and enter which are easy to reach by moving the entire body a few cm and letting the hands rest on my hip.