Changes, Good and Bad

I am noticing some changes this week.  Monday I finished my clinical trial of Tirasemtiv, a drug designed to increase “skeletal muscle force and power while delaying the time to muscle fatigue” (Cytokinetix, 2017).  Read more about Tirasemtiv by clicking here.

Besides not being able to fall asleep the past two nights until after 3 a.m., I am not experiencing my usual woozy days since first starting the clinical trial.  This leads me to believe that I was actually receiving the real drug and not a placebo.

I am now in a four week “wash out” period before I receive the real drug.  After two weeks I can decide whether I want to continue on the drug free of charge for life.  (Life?  Who ever gets anything free for life?  Oh, people with fatal diseases.)  I will find out the results after the study closes sometime in October.

Last year at this time I had just left my job.  I was walking with a rollator (a walker with front wheels).  I had already stopped driving after receiving the diagnosis on April 29, 2016.  I still hear stories by people punching that time clock and wonder if they too are working to retire and enjoy life just as I was.  I enjoy it in a very different way now.  I have added some new friends to my repertoire who share the same disease.  It is easy to relate to people who are experiencing some of the same symptoms and heartache as I am.

So the keyboard is becoming my voice.  Some people have begun to ask me to repeat myself.  I already feel like the third wheel in conversations.  It takes too long to enter a conversation and get the words out.  A lot of people are impatient, myself included.  So often I want to add a comment or tell a joke but it’s too far into the conversation or too much effort.  It seems impolite to ask others to standstill while you’re trying to be conversational or clever.fullsizeoutput_c09

One magical technological advancement that is working to my advantage though is that I am able to use the text-to-speech app on my iPhone to talk directly into my husband’s hearing aids.

Alas!  I have so far successfully busted every husband’s dream of not hearing his wife.  Almost wish I had this app years ago.

@alsassociation #ALS @alsadvocacy #FindTheCure @alsncchapter

References

Cytokinetics.  (2017).  Putting our power behind a potential treatment for ALS:
Tirasemtiv.  Retrieved August 9, 2017, from https://cytokinetics.com/tirasemtiv/

4 thoughts on “Changes, Good and Bad

  1. Marge & Sal Sicurella says:

    Hey Kathryn! I remember talking to you about stopping work. Feels like it was so long ago.
    Think and pray for you guys often.
    Love you! ❤️

    Like

  2. Kikkie and Paul Manginelli says:

    Kathyryn, The text to speech app on your I Phone is amazing. I’m sure Joe is thankful he is not missing anything. Kikkie and I pray for y’all daily. Love from Texas !!!
    God Bless You. Peace. Hugs

    Like

  3. Bruce Rinne says:

    Kathryn-
    Keep up the good fight. Continue to squeeze every little bit out of everyday. I have always loved your sense of humor and it is your trademark. So happy to hear the medicine could be working. Got to love technology. I’ll stop by soon to visit. Take Good Care and God Bless. Bruce

    Like

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