My disease progression continues, but this time it’s different. I can live without the use of my legs; I can live without the use of my arms. It’s not easy, but doable. But now, my progression is reaching the point of life or death. I can’t live without eating or breathing. Thankfully I’m not there yet, but I’ve made the turn.
First, is an esophageal motility test to determine if I need a feeding tube. I can still eat but often choke when saliva hits my vocal chords. Aspiration is the concern. Pasta doesn’t belong in my lungs.
I already have a Trilogy ventilator that breaths for me when I sleep. Love it. I will eventually need it 24/7. I also use a cough assist and suction machine to make up for my compromised respiratory function. All this, combined with an atrophied tongue, compromise my speech. I can still be understood in a quiet environment, but I will eventually lose my ability to speak. That’s a bummer because I love to talk.
So it’s different this time because this function loss is terrifying and requires life or death decisions. My world is shrinking and I’m reluctant to embrace the new normal. I will eventually, but I’m not there yet. A crystal ball would come in very handy right about now.
Where do I go from here? I could stay in bed and wait it out. I’m not a fan of that option. Instead, I will work through this and return to gratitude asap. How will that happen? I’m not sure, but this is what I’ve done so far:
- Been sad
- Been afraid
- Questioned everything
- Made a doctor appointment
- Been depressed and withdrawn
- Been frustrated
- Cried, sobbed, and yelled
- Had a pity party
- Went to support group
- Felt better
Here’s what I’ll do next:
- Finish writing this blog post
- Stick close to family and friends
- Take the esophageal motility test
- Decide what, if any, surgery to have
- Grieve when needed
- Stay present and grounded in my faith
- Enjoy time with family and friends
- Kiss my grandkids
- Redirect negative thoughts and return to gratitude
- Repeat
That’s my ten-step process to moving past recent losses and adjusting to a new normal. What about you? I don’t corner the market on difficult times, how do you walk through yours?
I’m Forgiven and Free and adjusting to a new normal
Shelly Hoover 
January 22, 2019 at 4:50 am
Hi Shelly,
I planned to come visit with Lori on the 30th. Is that Okwith you? What can I bring for dinner? What do you crave?
I am there…
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January 22, 2019 at 4:59 am
seeing you!
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January 22, 2019 at 4:52 am
I respect and admire you so much, Shelly. You’re introspective, open and engaging. It’s not an easy road…lots od hills and curves, but I trust you have the spirit to handle it all.
As for me, I’ve tried to roll with the punches that came swiftly this year. I try to focus on interests that I can enjoy online…things that include helping others. I plan for future events with family and friends to have something to look forward to. And then, there’s CHER! Lol When I’m in a dark place, I watch her “not the last of me video” and find strength. Seriously, it’s amazing and beautiful. Watch! https://youtu.be/6-4-PLsHZXA. Big hug!
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January 22, 2019 at 4:54 am
Shelly,
Your post humbles me. You are the strongest person I know. I admire your thoughtful, methodical process for managing loss and continuing to live a life rooted in faith and gratitude.
Your question to us, asking how we walk through difficult times, caused me to stop and reflect. Part of my process is to feel the emotions I would prefer not to have, instead of pushing them down or denying them.
Time and time again you generously share with us how you do this. You feel
the sorrow, anger, fear, loss. You are brave and strong to let these feelings in.
Unlike you I don’t know that I have a process for moving beyond those feelings. Over time the dark time passes, grief recedes, mourning passes, but that isn’t the same as methodically moving through a challenge, as you do.
I can’t imagine how hard it is to face the losses you have and to contemplate how to choose what to do next. I am so sorry you are having to consider breathing and feeding support.
I deeply respect how you are living your life, with intention, Faith, courage and strength.
Peace my friend,
Eileen
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January 22, 2019 at 4:56 am
Thanks, my friend. Your encouragement means so much to me ❤
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January 22, 2019 at 6:03 am
Thank you for sharing in you’re blog. Words cannot come close as to try and express the feelings and thoughts that come from reading your words. I love you and pray for the strength for your next steps.
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January 22, 2019 at 8:35 am
As usual, I’ve drawn my inspiration from you. Wanted to see you at the march today but hung close with Mom who’s getting up there now. Let Steve know we need to set a play date soon. “Love you even if you’re out of my immediate sight”. My Dad would tell me that.
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January 22, 2019 at 2:08 pm
As usual my sweet sister friend you’ve penned a well thought out, beautifully written post a about your new normal. Your 10 steps are a great reminder of living moment to moment. I don’t do resolutions and yet this year I found myself setting five goals.
1. Pray more
2. Worry less
3. Read more books
4. Sew myself a blouse (never did this…eek
5. Paint my kitchen
Your blogs always remind me to live in the present. I always consider myself fortunate to have both daughters/son in loves and grandchildren right here in Lincoln so that we can be engaged in their lives. It is a role that I love. I love you and your family…are you now settled into your new home? 😘❤️😘
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January 22, 2019 at 4:03 pm
Hi Shelly I enjoy reading your blogs I am sorry that you have to go through all this you’re such a special person very sweet , you encourage people you inspire people you are a ray of sunshine in many people’s lives even with your illness you give us strength thank you for being my friend I love you Shelly
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January 22, 2019 at 8:33 pm
Shelly, please know that I love you and pray to our Good God about you all the time. You are my role model and I pray that you have peace and fun times with your adorable grandkids. They sure love their grandma, I can tell from the Facebook pictures. Love you, friend.
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January 22, 2019 at 10:57 pm
Shelly and Steve,
Love you both.
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January 23, 2019 at 2:07 am
I just wanted to say how meaningful your blog has been to me, and how in awe I am of your continued strength, faith, and gratitude. You give me inspiration to live my life to the fullest, and to accept the hand I’ve been dealt with grace, grit, and love.
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January 23, 2019 at 2:31 am
Shelly, I meet you at Lincoln Bayside Church about the time you were dynast with ALS. My told you my dad passed in 1964 of ALS. Thank God you are with us.
Prayers
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January 23, 2019 at 4:45 am
Hi Shelly, just stopping in to catch up with you. You always inspire and motivate me, so thank you for being so open about your journey. I am sorry things are getting tougher. I will pray for clarity on all your decisions. Always thinkin of you my friend! Love & hugs, Lorri
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January 23, 2019 at 4:49 am
Love you Dr. Hoover! Thank your showing is what courage looks like. Sending you hugs and prayers.
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January 23, 2019 at 1:19 pm
Shelley, you are right: this is the scariest change. It will require more caregiving help than before, and more hours of the day focused on respiratory stuff. In addition to all your beautiful coping strategies, you might consider some MMJ and/or Ativan in small doses. Relaxing into the change is helpful, I think. Gratitude indeed, my friend. For friends, for blood red moons, for doggy snores and grandbabby smiles, and or whatever brings you any joy at all. It’s not about giving up; it’s about cherishing what is. I know that mindset crystallized my Stephen’s thinking at this stage. Much love and hugs to you.
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January 23, 2019 at 2:50 pm
Love reading your posts Shelly! For perspective, how long does it take you to type this thing? How do you type? Cheers, Eric
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January 24, 2019 at 3:02 pm
Shelly, its been a long time since we’ve worked together and I’m not on Linked In very often, but I’m glad I saw your post. You are an inspirational soul and I am humbled by your willingness to share your journey. Your honesty is enriching and I thank God for allowing us to have met.
Ernie Cason
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January 25, 2019 at 1:16 pm
Shelly, I was blown away by your recent post. I think we were part of the same NEALS 2015 group but I can’t find the participant list. My husband Jim had bulbar ALS and passed away just over 2 years ago. I learned so much about life and expectations through our journey, and yes it was both of ours. I mourn that he will not see our grandchildren grow up, the oldest was 2 ½ when he passed, but then I think about the lessons he will continue to impart to our family, the love, the resilience and the fight but also knowing when it was time to be released from this side and I do believe he knew when it was time.
-Your knowledge serves you well, you understand the good, the bad and the ugly parts of what is to come, you are braver than most since your eyes are indeed wide open.
-You are making the best choices in living life to its fullest each day, keep it up!
-You are a role model to both PALS and CALS and give all of us strength, some may be reading your posts now, some may find your blog in the future but your words will always ring true.
-You are loved and respected beyond imagination by those who know you personally and those who wish they did!
-You will follow your gut as you continue to move forward, you are armed with the information to make the choices that you will make with your loved ones in mind. I always say Jim gave me a gift by choosing not to go the trach route. He lived as he wanted to live and then knew when it was time to move on. We were blessed with a wonderful care team from the Les Turner ALS Foundation who worked closely with our hospice team and our caregivers. Yes they were OURS, mine too, since I could not have done it without help.
-Even when you are ready to move on, just know that you will always be in the hearts of those who love you and you love, you might not be here physically, and that is truly ok, but your impact on those around you and your fight for a cure for ALS will live on forever.
-I think that Jim’s fight for a cure did not end when he passed and yours will not either.
In the meantime work your list and REPEAT, REPEAT, REPEAT…..
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January 25, 2019 at 7:12 pm
Shelly,
What a wonderful person you are! Would you consider taking 0.25 mg of dexamethasone daily to see if it stops the progression of your ALS? If you’re interested, please read my website at:
https://drbillbasham.org/
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