Happenings / Medical

Into the Valley

Kristina here, typing for my mom.  You may also know me as Daughter #2.  That’s it from me.  The rest is mom’s.

We went to our UCSD ALS clinic appointment the other day.  I continue to lose weight, but I don’t recommend ALS as a weight-loss program.  In the three and a half years we have been going to the clinic I have lost nearly fifty pounds.  But then, I started this journey with way more excess poundage to begin with.  So, no worries on that account!efe04807-a43c-49cf-bb45-3fe49b017465

My hospice doctor had asked if she could observe how they run the clinic, so it was good to see two of my favorite doctors in one day.

We talked about maybe making some changes with some of my medications.  My panic attacks were not happening as much so it seemed like a good idea.  But, before any of those changes were made, the attacks returned with a vengeance.  I am worn out and sore from these violent attacks. In fact, we could not make it to our support group meeting last Saturday because, even with a dose of morphine, as we drove to the meeting, I began feeling like I could not breathe and went into complete panic mode.  That was that.  We had no choice but to turn around and go home.  I was out of it for most of the day.  Since then, I have had several more episodes.  Not fun.

Oh, the thrush culture came back negative.  So, what is in my mouth then?  I have heard of one other late stage ALS patient with the same complaint of “something in my mouth.”  Does anyone else out there have a similar complaint?  Just curious.

9babb185-f6a7-4fef-99b3-8fe6ca9f80d0I don’t expect to be going out anywhere from now on.  This is just how it is at this point.  There are things I would love to see and do but it is just too difficult now.  And I am okay with this.  My choice.  I have always been a homebody anyway, so this suits me just fine.

Psalm 23

The Lord is my shepherd, I lack nothing.
    He makes me lie down in green pastures,
he leads me beside quiet waters,
    he refreshes my soul.
He guides me along the right paths
    for his name’s sake.
Even though I walk
    through the darkest valley,
I will fear no evil,
    for you are with me;
your rod and your staff,
    they comfort me.

You prepare a table before me
    in the presence of my enemies.
You anoint my head with oil;
    my cup overflows.
Surely your goodness and love will follow me
    all the days of my life,
and I will dwell in the house of the Lord
    forever.

Love, Patty

22 thoughts on “Into the Valley

  1. Hi Patty, my mom too had ALS and passed on July 20th last year. On my birthday of all days. Bittersweet to say the least. I’ve been following your blog for over a year now and I am so blown away by your strength. My mom was also so so strong and was a fighter until the end. Her panic attacks did not seem as severe as yours and I hope you soon find the right medicine to balance. I’ve kept from commenting until now because it’s very hard for me, but I wanted to let you know my mom also had the feeling of something on her tongue. Her tongue had what I described as a “burnt marshmallow” look to it, and was put on an antibiotic for thrush. It cleared up enough where she was comfortable.
    Praying for you and your family always.

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  2. My heart goes out to you and your family. My hubby of almost 34 years is my PALS. I am his caregiver along with help from my grown daughter and son. You have love, you have faith – both precious gifts. I hate panic attacks and hope that yours go away for good. Thank you for sharing your journey and God bless you.

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  3. Thank you for sharing, Patty — and thank you for helping, Kristina. I love hearing from you. Wish I was there to give you a big hug. Rest easy, my dear friend. ~~Heidi

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  4. My brother had a coating on his tongue. They found that a tongue scraper helped some. It will depend on how “touchy” your gag reflex is. God bless you Patty and Kristina for sharing with us your journey with ALS. It’s like being with my brother again. I would give anything if I could be there to help out in any minute way. I love you and so does God. He has a special place ready for you in His kingdom and it will be a joyous day in heaven when you arrive. I’m sure my brother will be there to greet you with open arms!

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  5. Love you sooooo much Patti. I know this is one very hard disease and the closer you get to the end the more things seem to pop up. I miss Dan and while I can’t get him back, I would so love just one more day to care for him.
    Gloria

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  6. Bless you, dear Patty. You are an awesome woman. I am blessed to be a teeny part of your life. Love you always, pray for you always,
    Carlene

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  7. Patty, you remain in my thoughts and prayers. I grieve for your family and rejoice for you. We all know where you are going and will see you when we get there. Thanks for being brave enough to share this journey with all of us.
    Warm regards and admiration,
    Melissa

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  8. Thanks for another inspiring message Patty, and for your help Kristina. We accept that you can’t make it to the support group Patty, but if you would enjoy a visit from Ellie just let us know. Our thoughts and prayers are with you. Peter & Mary

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  9. I wrote a reply on the April ll post so this is just to say I continue to pray each day with love and prayers for you and yours.

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  10. Such a difficult time for you Patty. Praying you can have easier days ahead, we know you are in the arms of Jesus, He is with you…. Love to you, Barbara Sent from my iPhone

    >

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  11. Even as you start into the valley, you have a sweet fragrance noticed by all who come within the sphere of your influence.
    Your experiences remind me of my brother, your “keeping it real” a blessing to those who follow the path you are following.
    I pray for your peace & strength & courage
    Love you & thank you Daughter #2 Kristina 🙂
    I pray for you
    Your friend, Lisa

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  12. Hi Patty,
    My heart is there with you and you loving family. I’m not sure if you remember but I was Betty’s helper and that’s how you and I met at the support meetings. I’m living now in Scotland with a troubled daughter and grandkids, but as you, have a heart peace that surpasses all understanding. I guess I’m telling you this just to allow your thoughts to travel to a beautiful distant land. As we both know the most lovely land is yet to greet us, with glory and joy unspeakable. I so look forward to seeing our friend there,( I know even so she is near through the veil with us as are JESUS and the Angels). I pray increased peace now for you a joy. ( I had to say increased because I know you dwell in Gods presence but a little more is always nice😉). Love you Patty. So thankful for JESUS!

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  13. Patty, it seems like yesterday we were going to the Kearny High basketball games. (OK, maybe a little longer than just yesterday!). But I’ve been following all your posts and admire your courage on this difficult journey. Hang in there. — Dave

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  14. We thought my Paula had thrush also but hers showed negative also they never did find out what caused it but it did go away

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  15. Dear Patty,

    After following your blog for a long time I finally have to respond….thank you for all your courage and inspiration. After 56 years of marriage ALS stole my dear husband, Alan from me last month. You can never know how much your blog helped me as I cared for him during the last three years. He was a great man and like you fought ALS with dignity and courage but now I know he is at peace waving his arms and running those legs for all he is worth.

    You more than deserve all the prayers and love others have bestowed upon you and I wish to add mine and thank you for all the help you have shared with me.

    Blessings, love, and prayers, Shirley

    >

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  16. I pray so often for you, Patty. And I’m asking God to take you home soon so that you will be free and dancing with Jesus. I know that His timing is perfect. May His grace continue to sustain you.

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  17. My thoughts and prayers go out to you and Alan and the girls. I’ve been impressed with your writings from the beginning. So inspirational and informative at the same time!
    Love, Jean

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  18. Hi Patty, I went down this road with , My Bride and The Love of my Life, for 45 years. You are Blessing so many people! You are allowing us to follow the progression of a horrible desease. You are bringing, much needed attention, that will Help more than my words can ever express. You are a Beautiful, Loving and GOD’ly woman.You, Alan and your family are in my Daily Prayers. Thank You! Love Ya! Thank You! Kristina

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  19. Hi Patty,
    Your blog has been very helpful to me. As I read your blog and the comments of others who are dealing with ALS or are caring for one with ALS, I am humbled. It helps me keep some perspective.

    I have some symptoms that may be ALS, but so far it can’t be said for sure. I found your blog in part to find stories from people who are really dealing with this disease. What I found here is so much more than I could imagine. Your life, as written in your blog, is almost like the book of Philippians brought to life. I am so thankful I found your blog.

    I will continue to pray for your and your family.

    Take care,
    George

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  20. Dear Patty,

    My name is Kathy. I’ve had als for almost 4 years. I’m in a wheelchair and have some weakness with breathing but my family takes very good care of me : )

    I pray for God’s grace and blessings for you and your family. Thanks for a joyful and inspiring blog – I’ve read the archives, learned so much about handbells! And thank you Kristina for typing for your mom.

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  21. Thinking of you today, Patty and praying that you are having a good day. I often read, and re-read your posts. You are such an encouragement to me. Thank you for all your insight and positive attitude. It is a blessing to me and to others. Take care. Jan

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