I spent the afternoon helping my mom with her Dynavox DV4. It’s a speech device for when her ability to speak goes. At first we couldn’t get into the setup menus. Turns out the people who gave it to her had it set on a 1500 millisecond press time on the touch screen. So you had to touch an item for a second and a half and then wait another second and a half before anything happened. We just weren’t touching icons long enough, so it took us a long time before we were able to set up the device (including lowering the time needed to touch the screen).

One of the set up items was selecting the main screen. Most of them present tiles with icons that you touch to get it to say the word. some icons open sub-menus. And there are folders on the top that get you to different word sets. But my mom kind of liked one that had a full touch screen keyboard at the top with lots of buttons for various words and topics below. No pictures. It was fairly complicated. But we couldn’t figure out how to get that screen to actually say the words. There was no go key like other screens. Eventually though, we figured out that you have to press the rectangle with the typed words in it.

I have the device right now, so I can download the software updates for it. Also, I’m going to try to download other voices or fiddle with the ones that are there to try to get it to sound a bit more like mom.

She’s pretty overwhelmed with everything that’s going on. The person who is going to help coordinate her care isn’t really available for a few more weeks until she’s (the coordinator that is) done with a vacation. Her first A.L.S. clinic visit isn’t scheduled until late June I think, and my mom is trying to get some stuff set up before then because she feels like her symptoms are progressing pretty fast. But if she does visits before her clinic visit, she has to find all the various specialists she needs herself, rather than all in one place at the clinic. And also pay the co-pay for each of them individually.

Her symptoms are getting pretty bad fairly quickly. She’s gone from slurring her words when I first noticed to having a hard time swallowing sometimes. Now she can’t really chew, though she can bite soft food. That was a couple of weeks ago when I took her to Edward Scissorhands. Now she can’t move her lips either, and is having a hard time keeping even soft food going down.

Luckily, she hasn’t yet lost any dexterity in her hands or legs. Though she does get tired very quickly now.

One of the symptoms of A.L.S. is being prone to crying outbursts. So anything emotional tends to set her off. How much is just emotion from being in one of the suckiest situations possible and how much is added by the condition is unknown. But it makes things tough for her to deal with stuff, because she can’t hold off crying until after a conversation. Fine when dealing with loved ones, but when dealing with insurance or doctors or lawyers, it makes the interaction difficult.

She’s asked me to do some research into medicare and medigap insurance and compare that to her current insurance. Her current insurance is pretty good, but it doesn’t cover drugs. A.L.S. makes her eligible for Medicare. She could then use the drug coverage with that. However, she may not be taking drugs too much either. The only drug prescribed for A.L.S. extends lifespan by a couple of months. It also has the possibility of reducing the effect of her symptoms. But the latter is theoretical. She’s thinking about trying the drug out for a couple of months and seeing if it helps. So the question is, is the Medicare drug coverage worth switching, or is it better to stick with her current coverage where she’s already met the deductible for the year, but would have to pay full price for the drug (which she hasn’t decided for sure if she wants to take).

Those of my friends who work in medical billing, if you have any pointers for me I’d appreciate it. I can figure it out, but I’d love to save time.

So I’m going to do some research, then head up to Lynden Tuesday and Wednesday. Some of the decision will need for us to look in detail at her coverage and talk to the companies involved.

I put in my notice at Barnes and Noble two weeks ago. I told them that by the end of May I needed to be more of less off the schedule. (I won’t mind if they keep me on for the occasional shift here or there, but I don’t want anything regular for the time being.) Since most every in receiving has quit recently, they were glad I was able to give them a long time to find more people and be around to train them. Unfortunately, it looks as if I’ll need to accelerate the plan some. I’m scheduled for Wednesday, and they’ll need to deal without me that day. I won’t play the will someone please trade me shifts? game. They don’t pay enough to make that my responsibility. Next week on, they’ll need to schedule me no more than Tues-Thurs until the end of May. And I think I’m being pretty generous with this effort anyway. It’s an at-will state, so I could walk out on a moment’s notice.

I want to be able to spend time with my mom with no encumbrances.

11 thoughts on “Dynavox”

  1. I hate to be the one to actually say this if it hasn’t been mentioned already, but, your Mom most likely qualifies for hospice services. I don’t know her insurance situation, but it would be extremely helpful to your family, as you would have nurses, speech therapists who would help with the swallow and communication issues, PT, OT, social workers, bath aides. I would urge you to discuss this with her MD, as your family would benefit SO much from this support, and I can’t stress that enough!! Please feel free to contact me about this if you have questions. I also see the hospice patients as well for equipment, family training, etc. and they are always so thankful and appreciative to have this support in such a difficult time.

  2. I want to be able to spend time with my mom with no encumbrances.

    Good for you.

    Wishing your mom a Happy Mother’s Day.

  3. I can’t comment as to when you’re ready for it, but I will agree that hospice is about one of the greatest blessings in healthcare. Hospice allowed my mom to be at home with us till the end, the way she wanted.

  4. Jordan is in medical billing, I’ll let him know to help you out if there’s anything he can do. Maybe he can swing by some night and go over some of the things with you.

  5. I agree!! It allows people to remain in their own home and have all the support they need. I only participate in a very small way at times, but know how wonderful this service is. I’m not sure on details of what’s happening, but I would want Phil, his cute Mom and family to have all the help they can get.

  6. I’m so glad you are able to spend time with her. I’m glad you aren’t at expedia trying to deal with this right now.

    I can’t think of a single thing I could possibly do to be helpful, but if you think of anything, let me know. I’ve been known to be pretty patient with wading through insurance paperwork and websites and phone calls to suss things out, if there is any of that I could do. Or if you guys need some soft, home cooked food you could take to her.

  7. I want to be able to spend time with my mom with no encumbrances.

    You’re so lucky that you’re able to do that, I think it’s great.

    If you don’t get the answers you’re looking for I can ask my Mom for you. She’s getting her PhD in geriatrics, I don’t know how old your mother is, but it sounds like she’s dealing with many of the same issues elders do. She won’t know the specifics of what’s available in this state since all of her work has been in Massachusetts, but she does know the ins and outs of working with medicare and how to get the most out of the system.

    She’s done it for both of her parents, plus she worked for many years at an elder services company that provided many of the things your Mom will most likely need if she wants to stay in her own home for as long as possible.

    I suspect, as gargoylettelc said, your Mom is probably eligable for lots of services, home health aids, people to come and clean her house for her, meals on wheels, there’s a lot out there to help people.

  8. I got nothin’, other than I’m glad you are doing whatever you need to do to be with your mom as much as you can.


    Your family is in my thoughts daily.


  9. Sadly, I agree about the hospice. My mom is a nurse and I can ask her about this as well. My grandmother is in hospice care so I can also find more about that.

    I’m glad that you are doing what you need to do. I think of you and your family daily. Anytime you need a friend or a time to not be alone, I am always home and my door is always open. I think you are courageous and inspiring.

  10. Feh. When I was trying to catch up on all of my absent reading from the weekend, I saw Dv4 and medical billing and somehow dismissed this post as being about your mom’s DVD player setup and didn’t really question why one might want medical billing advice for that.

    I miss my brain sometimes.

    I’m glad you’re getting the Dv4 hooked up before her word enunciation gets too difficult – I can’t imagine the combination of difficulty to communicate + extra emotional spikes, so it’s really great that you’re already on top of some alternatives.

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