Happenings

Continuing My Education

It is getting more and more difficult to speak in such a way so as to be understood both by those around me and by Dragon. Generally, mornings are best. By late afternoon or evening, often everything I say sounds slurred. And I find that some days are better than others. I have no idea why.

P1070309 (2)Saturday happened to be one of the bad days as far as speech is concerned. It’s weird because before I say something I can hear it in my head, but what comes out lacks all of the tone and expression I thought I was adding to the words. So frustrating! I am learning to avoid sarcasm. Just can’t put the right tone into it.

Because it may not be long before I lose the ability to communicate using my voice, I have begun learning how to use my  Tobii  eye tracking communication device. The company rep tells me it is quite a learning curve. I think she is right! But I have to say it is kind of fun! I have been practicing writing and using the mouse controls. I am sure I will pick up speed as I practice. At least I hope so! At the rate I am typing using my eyes now, a blog post will take several weeks. Of course, Dragon is no picnic. I need to correct every sentence now.

We discovered that the cataract in my left eye makes it difficult for the Tobii to track that eye. I guess we will have to look into getting that taken care of. In the meantime, we have the Tobii set to track only my right eye. Another problem is light reflection off my glasses from the window. My distance vision (in my non-cataract eye) is 20/20, but for reading or computer use I need glasses. We will keep experimenting with adjusting the window blinds.

In the meantime, I continue to learn how to better use Dragon even as my speech deteriorates. I have discovered little tricks to streamline some corrections and to type certain words. Sometimes when using a word that Dragon does not recognize, you can tell it to “type B” for example, and spell the word out. The bad news: Dragon sometimes cannot tell if I am saying, “b” or “p”, “d” or “t”, etc. Good news: Enter the phonetic alphabet used by the military and the FAA. Bad news: I can’t always remember it! Good news: Yay for Wikipedia! I can just say “type bravo” or “type papa”, etc. Now, if only Dragon could understand me when I say THAT!!

Saturday we had our monthly support group meeting at the MDA. This was the first time we had met since losing Betty. Her husband and daughter were there. Everyone who knew her shared about how much she meant to us. I was not able to hold back the tears. There was no way for me to fully articulate my emotions. Betty was such an encouragement to me. She smiled and laughed easily, but she always kept it real. She was not afraid to share her difficulties and frustrations. I am so glad she is at peace now. We share a faith, so I look forward to spending eternity with her.

Our support group has become even more important to us as time goes by. I am so grateful to know these people and call them friends. It is surprising how much laughter happens at our meetings! Tears, too, of course. Ours is an exclusive club. The membership requirement, ALS, is a ridiculously high price to pay.

In light of Betty’s death, we were encouraged to think about our own mortality. I shared with the group about something I have been wanting to do for some time. It will require help. Over the years I have meticulously maintained a (somewhat large) collection of photos. As the self-appointed family photographer/historian, I enjoyed going back and looking at pictures from years past and seeing the changes. Since our move a year and half ago all of the photo albums have remained packed in boxes. I really want to see the pictures again. So yesterday Kristina came over and helped Alan bring in the boxes from the garage. Most of the albums are now unpacked and ready to be looked at! As time allows, I will ask whoever is with me to help me to look at the pictures. My caregivers will be my hands.

My education, so it seems, continues. I am learning to ask for what is important to me. And how to use technology that is new to me. Most importantly, I think, I am reminded to cherish the people God brings into my life. It would seem He is not finished with me just yet.

Guide me in your truth and teach me,
for you are God my Savior,
and my hope is in you all day long.
Psalms 25:5

Love, Patty

8 thoughts on “Continuing My Education

  1. Patty, I’m constantly amazed at your courage and your inspiration. It’s not fair you got ALS, but you’re teaching everyone what is important in life.

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  2. As your ALS progresses, your Tobii will become your best friend. My brother used his everyday and spent many hours on it. He had it programmed to turn his TV on and change the channels and also his radio. When he was tired of his Tobii he would just rest and listen to KLOVE. He was using his Tobii just the day before he passed. Embrace it and get as much out of it that you can. My prayers and thoughts are always with you. I know my brother is looking down on you and smiling from ear to ear because he knows that you, like him, will not go down without a fight. God bless you and God bless your blog. Youdon’t realize how much you are doing for others with this horrible disease.

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  3. hello patty , i am so glad your friend Betty is at peace. she sounds like it was a blessing for you to have befriend her. i had a rough day today, very frustrated will not see my neurologist until may 12th…my husband a physician still says i have ‘an ill defined neuromuscular disease’…thats not good enough for me…he does not feel the neurologist will say any different. all of your passages are so encouraging, may your heart and soul have many blessings for helping all of on this site.

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  4. While I don’t have your problem with ALS I do feel that I understand for I am frustrated
    with my lack of ability to do the things I did before my fall. i hope the Tobil will help you
    with your communications.. It will help when you get the cataract taken care of and that
    is a comparatively easy thing to have done. That I know from experience. I’m so glad
    for your spirit and your faith. I depend on my faith to get me through my days. Thanks
    for sharing your thoughts. As usual much love, hugs, and prayers.

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