Thursday, July 20, 2017

als - voice banking


I am sitting here wondering, "Why didn't I EVER RECORD MY VOICE!"

That certainly was dumb of me.  There were about two or three years post diagnosis where I COULD HAVE HAD clear recordings of words and phrases to be used later for AAC (augmentative and alternative communication).  But I didn't. 

Time for some Q & A... 

Q: Why didn't you? 

A:  That is a great question.  

Sigh.  Honestly, probably because I was terrified of the disease.  I wanted to fight it, and in my mind, voice banking was admitting I couldn't stop what was happening.  And then I figured I could always do it "later."  So foolish.

Q:  Do you regret it? 

A:  And THAT, my friend, is a dumb question. 

I will refer you back to the second sentence of this post.  Of course I regret it and now there are the consequences from my lack-of-foresight decision.  Despite all the capitalization of words, I am not angry, more of that wistful feeling of wishing I could go back in time.  Since that can't happen I'll move on. 

The purpose of this post is to say that someday if you are diagnosed with als, don't put it off, record that beautiful voice of yours! 

Actually, you never know what will happen to you, so why not record something today.  Record a few phrases, or a story, or you reading your kids favorite story OR singing a lullaby.

---------------------------------

*Addition*  
I woke up thinking what I wrote yesterday, in particular, the comment about "a dumb question".   I take that back. Ask away. 






Friday, July 14, 2017

sunrises, cameras and the Tobii Dynavox I-12


About once a week in the summer I will watch the sunrise. I like to go outside in the early morning, when the sky is still grey, to see the sky transition through all the colors leading up to that moment when the sun comes out. It is so peaceful. 

This particular morning my parents were over, so my Dad came out with me and took a few pictures. 

I really miss holding a camera and taking pictures.  Back when 35mm film was popular, I had my 24 chances to get the perfect picture.  I would drop off the roll of film to be developed.  And wait.  There was always that anticipation when picking up the envelope to see how the prints turned out.   

While I love photography, even more so I love being able to communicate.  In the past I mentioned that my voice is rubbish. Well I was practically a nightingale back then compared to how I sound now! 

Recently Jeff and I have been meeting with a Speech Therapist and different reps for portable speech generating devices because my voice is at it's end.  I felt a bit anxious meeting with the different people until one of them mentioned how the device has two cameras. What was that?  It has a 5 mp front facing camera and a 2 mp rear facing camera.   

Obviously the primary need is to have a voice (any voice will do) and to communicate clearly.  But, to take pictures with my eyes would be awesome too. 

Currently I am looking into the Tobii Dynavox I-12. It would attach directly to my wheelchair. 


Friday, May 5, 2017

don't forget to check the dryer


Last week we sold our clothes dryer on the classifieds.  About an hour after the buyer picked it up he messaged Jeff asking, “Did you know there are clothes in the dryer?”

That would be a “Negative.”

When Jeff relayed this conversation at dinner, Erik got a funny look on his face and said, “Those are MY clothes!”

The rest of the family burst into laughter which Erik did not find funny at all.

The funny thing (there’s that word again) is that the past two or three days Erik had been saying he couldn’t find some clothes he wanted to wear.  Whenever he brought it up I suggested he look under his bed, or in the pile of stuff on the floor in his closet or in the hamper.

Turns out that they were just in the dryer all clean and fluffy.

This week Erik decided to do his own laundry by himself.  No more runaway clothes.


Hike they went on in April near Escalante. 

Tuesday, May 2, 2017

Rodrigo y Gabriela




Have you ever listened to the guitar duo, Rodrigo y Gabriela?

The first time I ever listened to them the music was like nothing I’d ever heard and it blew me away. 

Rodrigo y Gabriela are touring the U.S.  later in May and early June, and for some UNFORTUNATE reason they are NOT coming to Salt Lake City.  

If you are lucky enough to live near one cities where they will be performing will you go for me?

Here is a performance from a TED Talk.  

Monday, April 10, 2017

another memory saved






This picture is from last fall when Erik ran cross-country. Now he is in track.

I love going to the meets and watching and cheering for all the kids.

I love that most of them are there trying to improve their own PR.

And...

I love those stinky post race hugs.



Friday, April 7, 2017

save a memory, take a picture


So many memories I don't want to forget, and taking a picture is one way to keep them alive.




I am grateful to Claire for having her ipod handy to snap these pictures of "Girls Night".   We had just finished watching a tween movie and decided to have a hula-hoop contest.  Megan put on some music and we all took turns.

Claire can get the hula-hoop from her waist, to her neck, and back to her waist without dropping it.

For me, they put the hula-hoop around my waist and I turned my wheelchair around in circles.

Megan hula-hooped to "Car Radio"  by 21 Pilots.  It cracked me up to watch her hula-hoop to the entire song and half of the next, while singing, like it was a perfectly normal thing to do.










Saturday, March 25, 2017

good morning


Email that I sent to my friend, NeYoda.
It is a nickname given to her (by Dawn) because she is wise, like Yoda.



Good morning NeYoda, 

It looks like spring.  It smells like spring. It feels like spring. Finally!

For me this time of year feels more spiritual... I will sit outside with my eyes closed and there is an energy, that is almost tangible, as everything that was dormant starts to wake up and grow again.   And I don't mean any of that in some weird hippie way.  I just love this time of year.

So Megan.

I looked at Megan a couple of weeks ago and there was something different about her.  Her eyebrows were half gone!  What The Heck!?  Turns Megan had tried to shape her eyebrows with a razor. It didn't look so good. Oh, she also cut her long eyelashes back by half.  Why?  I am still not entirely sure.  The best answer might be, "Because she's Megan."

Sending love,
Janae :)


 
NeYoda and Megan back in 2012.