Happenings / Medical

zzzzz (Yawn) … I’m awake!

See? My eyes are open! Really, I am awake now! And having a glorious time playing with my new toy communication device.

I love my new Tobii! It is a wonder, truly. Not only is it now more fun playing around with all the different voices to choose from, but writing is so much faster and easier than before. I have not used a mobile phone in a couple of years, but those of you who do probably enjoy a feature called “autocomplete” or something like that. The phone guesses what you are about to type saving you from having to type each letter. Tobii does this with “word prediction” in both the communication function and just general typing such as this, email, and social media. My old Tobii only had that feature in the communication function. So writing my blog posts was a tedious process. What a difference this new one makes!

Unfortunately, this comes at a time when we have been dealing with getting my anxiety issues under control. I’m often sleepy due to the medication needed to keep the panic at bay. The result is that I have not felt much like writing. But I think maybe we are getting close to finding the right combination of drugs, as well as the timing of the doses so that I don’t spend all my days in a zombie-like trance.

So I am hopeful that I can soon get back on track with blogging about once a week or so. I do still have stuff I’d like to write about.

Our MDA ALS support group met recently. We appreciate this group so much. These folks are always open and honest about this difficult road we are all on. Our local MDA office is in the process of moving to a new location. Our next meeting place is still to be determined, as they will not yet be settled into their new office.

I was contacted by the editor for the MDA’s quarterly publication “Quest” the other day. The winter edition of the magazine has gone to the printer and will soon be out. There is an online edition as well. This quarter, the magazine’s feature “From Where I Sit” is written by (ahem) yours truly! No kidding! They contacted me several months ago to see if I would be interested in submitting an article, and I felt so honored. Now we are just waiting to see how it looks in print! I will share a link to the online edition when it becomes available.

We made it to church last Sunday, and despite being drugged, I did not fall asleep! That was a definite possibility given the potent medications I am taking. So, Pastor Curt, I may not remember all you said, but I was awake!

The weather forecast is for another round of El Niño rains this Sunday, so I expect we’ll st…   zzzzzz

(four days later…)

Yeah. So this is my life now. Little bits of clarity mixed with lots of sleepy-eyed non-productivity. Gotta write in brief snatches of lucidity.

So, let’s see, what else has been going on around here? Oh yes! Sweet Bonnie, the hospice therapy dog, paid a visit last week. She’s such a great snuggler. bmt

My appetite continues to decrease. I’m finding it difficult to eat and drink by mouth. This is because of fatigue along with lack of coordination involved in the mechanics of moving food and liquids in my mouth. We’re using my G tube more these days. At least one can of Jevity a day right now, but I think we’ll be increasing that soon. It’s just too hard to eat. I thought this would bother me more than it is. But I’m actually glad we have the feeding tube option.

It’s now Sunday afternoon and I don’t know how much energy I have left, so I expect I should wrap this up.

Thanks to everyone for all the prayers. Remember Alan especially. He thinks he might be coming down with a cold.

I love you all!

Whoever dwells in the shelter of the Most High
    will rest in the shadow of the Almighty.
 I will say of the Lord, “He is my refuge and my fortress,
    my God, in whom I trust.”  – – Psalm 91:1-2

Love, Patty

8 thoughts on “zzzzz (Yawn) … I’m awake!

  1. Hi Patty! Glad to see you are awake! It always makes me happy when I see a post from you in my inbox! I continue to pray for you daily.

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  2. I was happy to see your post when I came back from supper. They had problems in the
    kitchen here today so food was not the best. I am also glad that you have a new Tobii
    which works better for you. Much love and prayer.

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  3. Hi Patty! I’m so happy you got a new Tobii. I’m studying to be an SLP and in one of my AAC classes I got to use one of those puppies the entire time to communicate. It had the word prediction feature. I really don’t know how you wrote these posts without that. That’s very impressive! By the end of class I was so exhausted and it definitely works out your eyes muscle. I’m also happy you’ve been less sleepy. Can’t wait for the posts to come and your article on “Quest”. Always so wonderful to hear from you. xoxo

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    • Aww,thanks so much, Ursula! You are going to be a great SLP. We just love mine. (Hi, Joanna!) So excited about your precious bundle coming in a few months!! ❤

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  4. Hi Patty,

    By the way my sister’s name is also Patty. Glad you have a new Tobii. I had an appt with my neurologist last week and if wasn’t for my husband, we wouldn’t have been able to communicate. She could not understand what I was trying to say. So she recommended a communication device. I don’t know which one. I would like the Tobii, but I was wondering if the insurance gives us a choice. What’s the make and model? My prayers are with you.

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    • Hi,
      I don’t know what your insurance is like, but the way it worked for us is this: Step 1, my doctor referred me to a Speech – Language Pathologist for an evaluation. They will help match your needs to the best device for you. They also know how to deal with insurance coverage or Medicare. You will need them as an advocate, believe me!
      I also highly recommend lowtechsolutions.org. We could not manage without my word board and laser pointer.
      You are in my prayers as well.

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  5. WOW. Welcome back Sis…..you go girl…as some like to say. And you are awesome. I was missing your blogs and very concerned as to just what was happening to you. Another miracle of mind, matter and excellent medicine….of course always family and friends make the circle complete.

    I hope mother will be over to see you soon, as possibly, with Friday visits. Mother has such hip pain that movement is difficult. I believe that is more cured by being able to be with you as often as possible and see you are having a great time with the new Tobi8-) The new mind and matter that ‘matter’ to us all a gift to our time, here.

    Lov u more and I hope I will be able to come over some Friday, when mother is visiting too.

    Hugs forever, Vivi

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