This is a compilation of postings that Julie made to Facebook in what came to be the last month of her life. May was ALS Awareness month -- and Julie certainly made a lot of people more aware of this disease. These posts do not include the many comments that were posted on Facebook and I would encourage you to visit Julie's Facebook page to read those -- lots of love and support were expressed.

May 4 -- I was officially diagnosed with ALS in August of 2020- the same month that Lexie Kreizel started her college career as a Concordia Bulldog Today we got to celebrate her as she graduated with a degree in Elementary Education with Distinction So grateful for all the love and support she received from professors, classmates, teammates and coaches. Ben and Angie Boldt, you are a blessing. So thankful for every family milestone I am still able to experience!

May 5 -- My ALS… I remember the last time I drove.  It was winter/semester break and I had a hair appointment. I really struggled to make a few turns- got a bit scared. That night I told Cliff that I didn’t think I should drive anymore.  I lost my independence that day  We realized we’d need to figure out how I was going to get to and from work! This disease doesn’t just affect us physically, it also creates logistical challenges.  So, take a moment to consider what it would take for you to continue life, but without driving.  A few months earlier my left hand had gotten much weaker, but my arm was still useful. I was very grateful for a vehicle with push button start as I could not turn a key. We also acquired a special hand grip attachment for my steering wheel! (see photo) Grateful for these resources that prolong skills or make them easier- even if we don’t get to use them for very long since the disease just keeps taking.

May 6  -- My ALS…Question: Do you spend much of your work day typing and/or otherwise navigating a computer screen? I did.  But as I lost strength and fine motor skills in my hands, that became a huge challenge. FEAR. Can I do my job?  I loved my job!! My brain can still do the work!!! What would you do??

I needed some accommodations and modifications. I got a headset and some coaching from the LPS special education department on speech-to-text communications. My occupational therapist was an amazing resource showing me how to use voice commands to navigate my screen and how to program my mouse to select, click, drag etc by responding to different facial gestures (blink, smile, wrinkle nose). With these tools I was able to continue writing math assessments, exploring new curriculum and supporting the teachers I was expected to serve.  Again, logistics-this time with the added learning curve! So if you ever want to explore some of these helpful features, you can find them in your settings under “accessibility”.

May 7 -- My ALS…Imagine living your life wearing a STRAIGHT JACKET!  My right hand fingers atrophied flat so could not make a fist. My left did the opposite. As I walked, I would hold my right hand in my left hand. If my arms hung by my side, gravity would cause a painful pull on my shoulders. With two weakened limbs came some big challenges.  Ladies, would you trust your husband to do your makeup? Cliff mastered that and a pretty good ponytail. More logistics: How do you navigate your workplace when you aren’t strong enough to pull open the doors? I was blessed to work with caring and strategic people like Jerel Welker (now my friend in heaven), who used his mid-morning walk about to find me a way in using just  accessible doors!

May 9 -- My ALS… One thing that has been “annoying “ for me is when my nose itches!  Perhaps you’ve thought about things that would be hard to do if you couldn’t use your hands and arms, but what about all the little inadvertent things you just do without realizing? Scratch your head, push hair out of eyes, adjust your glasses- NOPE.  So annoying.  I’ve stated before that this disease starts and progresses differently for each person. But eventually we all get to a common lack of independent moving, eating, speaking, and breathing. It just happens for me that arm strength went first.

Click image to enlarge

May 10 -- My ALS… I fell…. at work…. was HORRIFIED!  After my arms, the disease began to weaken my legs. Starting with a little hitch in my right hip and slow, careful steps as I carried those dead arms around. I was presenting to some of our teachers at a summer math training, lost my footing while stepping backwards, fell against a wall and landed on my butt. FEAR. EMBARRASSMENT. I believe I cursed. But have I mentioned that I worked with the most wonderful team? When I fell, Josh and Jerel were immediately by my side to get me off the floor. Anne was in position to shield me and guide us out the door, then cover the info with the teachers (my wingman). Delise sat with me privately to regroup. We cried, prayed and quietly slinked back into the session. That experience was validation for disability early retirement (July 2022).

May 11 -- My ALS… Construction Zone … We wanted to stay ahead of the disease. We live in a walk-out ranch home with our master bedroom in the basement. Obviously at some point that wasn’t going to work! Since we were empty nesters, in Spring of 2022 we blew out the wall between our daughters rooms and created a master suite with wide spaces, walk-in closet and large bathroom with huge zero-entry shower all accessed through pocket doors. Yay! Made it to main floor living just in time, as I could no longer trek the stairs in the fall. But it was a very stressful process. This disease impacts life on all fronts, including the financial.  Is your home wheelchair accessible?


May 12 -- My ALS…Fatigue Is Legit.  2022 late spring appointment and we’re talking disease progression. Pleased I’m walking, although slow and labored. Doctor and therapists ask about activities or events we might be looking forward to in summer. We like to see our nephews play ball, and love our family vacation.  They asked if I might consider using a wheelchair? I said, “Um, No.” I felt like that would be a surrender, and I didn’t want to be a quitter! So they presented some perspective… “Julie, your energy is finite, and we want you to conserve energy where possible so you can spend it on the good things that matter.” That’s a good point! Heck, walking into work every morning took physical energy, but also mental energy because I had to concentrate so I wouldn’t trip or lose my balance. When I reached my desk I needed to rest a minute. So think about baseball fields (like Mahoney or Optimus) where there are long walkways from parking lot to the actual ball field- I could spend a lot of energy making that little trek, and I’d be so slow.   Well, ALS in the Heartland sent us home with a loaner chair that day! So grateful for the encouragement and support for quality of life choices.  Used the chair to ride in/out of volleyball venues too- but still sat in bleachers as much as possible!

May 13 -- My ALS… Are you a stomach sleeper? Side? Back? Do you like to flip your pillow? Do you get hot flashes and need to stick a leg out for relief? Do you get cold and pull a blanket up under your chin? Do you get up in the middle of the night to use the restroom?  This disease can put a stop to all those choices. Instead plan to sleep primarily on your back. Then think about how you want your arms and legs positioned or propped, and how you want to be covered. Think carefully because you’re making a commitment until morning (at least if you’re single or can’t/don’t want to wake your spouse). That’s just the basics for when you’ve lost arm and leg strength! Eventually you can factor in wearing some kind of breathing apparatus too. My newest challenge is weakened neck muscles so I cannot lift my head to reset on my pillow- ugh! Anytime I wake to some discomfort (cold feet, sore elbow, hands tingling) I negotiate with myself: can I endure this or do I have to bother Cliff? And by the way, my body still longs to curl in the fetal position with one arm snuggling my pillow. Just like my grandbaby Carson.  Sweet dreams friends.

May 14 -- My ALS… If I stopped by your house today, would I be able to come in for a visit?  I always wanted a house with a front porch to gather on, but I don’t have that. One day I noticed that our new neighbors had added this cute new deck to the front of their house, and I thought “hey, we could do THAT!” We also realized at the time that we were going to need ramp soon enough and we wanted to be prepared. If we could coordinate a ramp with a deck that would be awesome. So we visited our neighbor, Dana Genereux for some guidance… what we received was an amazing blessing. We bought materials and Dana designed and constructed our ramp/deck! Our nephew Kolt and his buddies Koston, Trenton and Tayven (Dana’s son) provided some labor, earning community service hours for school. LJ and Cliff put in a little sweat equity too. We are thoroughly enjoying our deck time together as a couple, and also with neighbors, friends and family who visit.   This is even more important when you consider that we can’t really go visit many homes- I am in my 400+ pound power chair full time during the day. I can no longer enter any of our siblings’ homes, and that’s just a sad reality.   Imagine not being able to attend a loved one’s birthday party or a holiday gathering because you can’t physically get in the house.

May 15 -- My ALS…We’ve all experienced muscle cramps in maybe our calf, foot or side, right? Well, my muscles behave in strange ways as this ridiculous disease introduces me to new muscle groups it plans to weaken. Let’s just say expanding and contracting were not equal and opposite movements. In my right hand, if I spread my fingers out wide, when I released the strain and my fingers immediately returned to a resting position, my thumb would linger out wide like it was stuck there. With the left hand my fingers curled and muscles became too weak to straighten on their own. However, they would randomly spasm offering a seizing tight grip that could dig my long nails like daggers into my palm- ouch! I’ve worn a splint on that hand at night to coax those fingers back straight. Basicallym I have become aware that the slightest twitch to a muscle may send it into an extreme involuntary contracture (cramp). I remember startling Cliff in the middle of the night when I cried out because both of my legs went full seize- happens fast and strong, but releases slow. Some evenings I would be sitting back in the recliner and I could watch the twitches above my knee- like little pistons misfiring over and over. It was kind of fascinating.   Arms and Legs are tolerable. Experiencing this now in my neck, jawline and chin, NOT so much! These are more uncomfortable and to me, scary, as I brace for these involuntary strains when trying to brush my teeth, or hold my head still for chapstick application, or verbally respond to a question. Anyway, these are just some of the nagging discomforts that come along with the journey, so thought I’d share for the curious.

May 16 -- My ALS…What are your favorite foods? I love cheese! At one point Meal-Train was started for us. What a blessing! We enjoyed so many wonderful meals and the additional monetary donations afforded us opportunities to order in from places we like. Before this disease could rob me of the joy of tasting delicious foods, I was giving myself permission to eat whatever I wanted without guilt!  As time passed, meal-time took longer as I needed smaller bites and more concentration to manipulate and safely swallow my food. My tongue was now the weakening muscle. Last fall it was becoming stressful to swallow pills.  I would panic- when taking medications. I also had one newer med that comes as a powder that is to be mixed with 8oz of water, creating the most bitter awful drink you can imagine.  A miserable experience. So, again we chose to make a move in advance of necessity. In December, I had a feeding tube placed enabling me to take all my meds via tube. I could also supplement some nutrition when we were in a crunch for time, like traveling. Sadly, over the last few months eating has gotten harder and harder. My tongue can’t get to bits of food stuck in my gum lines and sometimes particulates go down the wrong pipe making me cough and choke. NO FUN! I’m facing the reality of a full time liquid diet- glad I’ve gotten used to the tube.  So next time you have a grilled cheese sandwich, a slice of cheesecake, or a plate of lasagna, savor a few bites for me.

May 17 -- My ALS… Maybe I should talk about my power chair.  I’ve had it for over a year now. Before getting it, I was confined to one recliner and in one position for hours at a time when Cliff was at work. This beast of a machine allowed me to regain some independence! It was a bit overwhelming when I first sat in it- see photo, as that is what I told people it felt like. It offers me the ability to recline, to put my feet up, to fully tilt (giving my shoulders some gravity relief), and to elevate so I get a better viewpoint (since I’m usually parked in the back of a room) or simply get to eye level with someone for a conversation.   Obviously, I can also drive around. But did you know that the way I operate the chair to do all those things is by moving my head?  Talk about a learning curve! I may have crashed into a wall or two, and still struggle with narrow hallways!! But it was a game changer and I am very grateful. Many folks know that once we had the chair, the more daunting challenge was affording and acquiring the kind vehicle we could ride in. Family and friends came to our aid, helping us get the “Batmobile” - we were humbled by such generosity. My chair also had a huge price tag, but we have excellent insurance that covered the bulk. Again, the financial stress that comes with rare diseases is real and I think that is sad. Hopefully I will get to use my chair for a very long time.

May 18 -- My ALS…Respiratory Equipment .. Take a deep breath in, hold it for a couple seconds, then blow it all out. Those cleansing breaths are calming aren’t they? I miss those now. Last summer my inhale/exhale measured about 50% compared to initial diagnosis breathing power. So we added a pulmonologist to my schedule. We were set up with a bi-pap machine that I could use at night, or anytime really. This machine matches my breathing pattern and then basically breaths with me, but with a little more “oomph”. Remember back when I mentioned energy is finite? My lungs get tired doing all the work, so bi-pap gives an assist. It also affords me the ability to get deeper breaths and expand my lungs which can preserve strength longer. Grateful lungs are still working though- avoid a tracheotomy as long as possible!  Oh, and it’s allergy season right? So coughing and sneezing season. For me, the sinus drainage is nasty. You ever have to work to get a ball of mucus out of the back of your throat? Well that’s my nightmare as I lack the coughing power to hack that up! So we get a couple machines for that too.  One is a “cough-assist” that aggressively pushes and pulls air to remove the crud from your lungs. I don’t like it, but it’s effective. And finally the suction machine- stick that hose in my mouth and vacuum out all the mucus that my tongue is too weak to manipulate and spit. Oh the joys.

May 19 -- My ALS… Women of Faith -- Once I retired, my girlfriend Melissa said, “I’m coming to spend a day with you.” She did just that, and then did again the next week, and the next and has faithfully come every week. We chat, share a devotion and support each other through the highs and lows of our week. We call it our weekly therapy session. Mel’s Dad battled ALS- she gets it. Our friendship began as young moms and this year we became first time grandmoms!
This past fall my friend Susan reached out and asked if we could read the Psalms together. Yes please! She starts off our week in the Word and prayer. She has been a mentor and friend through most of my professional life, and continues to pour into me now.  My friend Delise and I share a love for worship music- VBS songs, hymns and Christian radio. This past year she learned to drive my power chair so we could go to a MercyMe concert! We’d been to 3 other concerts before- so fun.  She stops by to visit on the regular and we enjoy chats about teaching, our families and our church communities.  Anne- my partner in crime, my wingman, my math resource co-creator, lunch buddy and work bestie. She’s the person who may know me best. And I miss our work life. Thankfully we stay connected and she visits about every other week. She makes me a better person, shows me how to find the best in others, and we always laugh together. Then there are two women who pour into me through frequent written correspondence. My face lights up when I get mail from Miss Stacy (Jason Leimbach) or Julie Johnson Ferri.  Thoughtful cards, bible verses and other words of encouragement tend to show just when I need a boost. Emotional health is important to take care of too. I wanted to lift up these women of faith as they play a critical role in my emotional and spiritual wellbeing. They have diligently and consistently prayed with me, cried with me, laughed with me, listened to me and shown me undeserving love. Their impact on my quality of life is immeasurable.

May 20 -- My ALS…At every doctor appointment we get asked how transfers are going. Of course my legs were getting weaker, so it’s a given that Cliff’s standing, pivoting, stepping me was getting harder. It was suggested that a lift might be helpful especially for transfers in and out of bed. Our friends at ALS in the Heartland said they could loan us one so we would try. By the end of the week Blaine rolled up our ramp with motorized hoyer lift ready for service. He then sat to visit and see if he could offer any other assistance. I shared that it puts a lot on Cliff to be my caregiver, especially under time restraint in the morning so he can get to work. I said I would like to take some of it off his plate and I was now mentally and emotionally prepared for hired help if there might be a recommendation. (I had been praying on this) Blaine told me about a young nursing school student who was recently working with an ALS patient and might like to do so again.  We tried the lift! The reality was that the acrobatics necessary to attach and maneuver this equipment was more physically difficult for Cliff than his trusty heave-ho hug. But, we made contact with CNA Katelyn and invited her to come meet us. I explained that I was looking for someone who could help me get up and ready for the day maybe 3 mornings a week. Her class schedule allowed just that. And she has been a blessing! Kate is caring, patient and has a good sense of humor.  I liked the new routine, and wanted to add another day, but her new semester schedule was tough. We were going to need someone new. God knew our needs! One weekend Kate bumps into one of the other nurses who was on that previous patient care team. And that’s how we got connected with Ali! She’s insightful, nurturing and thoughtful. Between these two, we had morning care covered on all the days we asked for!!
As we wrapped up the semester, my weakness made me more like a heavy rag doll. I didn’t like the toll it was taking on Cliff’s back and knee, nor the frustration we seemed to be causing each other. No doubt I love my husband and he loves me. But lately there have been nights when I don’t think we liked each other much.  So I talked with the girls about adding bedtime care. My goal was for Cliff to only do the heavy care routines Friday night, Saturday night and Sunday morning. Kate and Ali made it work. What they have each said independently is that they work for us, both of us, and they will do things that help our quality of life together. So, don’t worry, they are both rock stars with that LIFT.  **Ask*Seek*Knock** We are blessed!

May 21 -- My ALS…On a work trip in 2007 with three other math teachers for a week. We gained some nicknames: Bossy, Rockstar, Sir, Chatty. Can you guess which one was mine?
When your breathing gets weaker, so does your voice. As your tongue weakens, your annunciation suffers. Speaking is definitely the hardest thing for me to lose to this rude disease. Communication is one of my 5 strength finder strengths! So unfortunately (or maybe fortunately, depending on who you ask), I have become much less “Chatty”. Thankfully we have technology with text-to-speech capabilities. But if this is something most folks already know or assume, then why am I posting? Because maybe you didn’t know that my device has MY voice!
Last summer we were encouraged to use voice-banking. The Team Gleason Foundation supports people with ALS giving access to a program that records and stores the voice. So Cliff completed necessary forms online with the foundation. Then we were sent links and instructions to bank my voice. Basically the program presents 50 sentences that I read and record one at a time. I guess the collection of words captures all the phonetic sounds needed to create other words. Pretty cool! We submitted the recordings and they created my voice and instructions for linking it to my text-to-speech program on my iPad. I may speak now at a snails pace, but at least it’s still me.  Another fun thing I did was read a book to my grandson. For my birthday, my mom gifted me a sweet children’s book with a recording feature capturing my voice as I read each page. Then, for Christmas, I gave the recorded book to baby Carson.  I found such JOY in time spent reading to my kids when they were little. I was hoping to somehow have that same experience with my grands. Thanks Mom Judith

Lexie reading to Charlie (Bailey's cousin

May 22 -- My ALS… I have long hair. I chopped it super short ONCE and will never do that again- it was more work! I like the options to style it up with some curl, get creative with braids or just pull it up in a quick ponytail. Well I’ve mentioned before that doing my hair got challenging but we adapted the best we could for as long as we could trying new gadgets and accepting the basics that Cliff was willing and able to do. I continued getting highlights though as that helped me feel more positive and professional. Do you know where many women go to share their personal stories, a sort of therapy session? Their hair dresser! And I get my hair therapy from the BEST!! Sara has been caring for my scalp and long locks for years, and of course, she was learning about my disease challenges as they came into play. So when I admitted that I couldn’t wash my own hair anymore and wondered how many times a week I should force Cliff to, she said no way. She grabbed her appointment book and said she would wash and style my hair each week-we would figure it out. She’s like my angel on earth.  (we do call her Hair God) Each week I got the royal treatment because Sara gives a scalp massage that is amazing and then she would do something fun to style me for work. Then she also said that any day that I’m struggling and need a quick style she would be happy to help.   Then her sweet salon buddy Kirstie said she would be Sara’s back up whenever needed. This arrangement took a stress off of Cliff and meant bonus therapy for me. As time has gone by, we’ve settled into a Wednesday morning hair date, but maneuvering through those meant adapting to wheelchairs and other transitions. Sara has never wavered. Today she did the ultimate- house call! She is simply the best and we love her so much. Once I moved to the power chair we were limited in hairdo options because I couldn’t have hair getting caught in my head array - so my standard look includes some variation of braids or twists up front and messy bun high on top. Sara always makes me look and feel put together and confident. Every woman with ALS should be blessed with a Sara.

May 24 -- My ALS… Doctors and Therapists 👨🏼‍⚕️🩺
Every three months we attend a “clinic” appointment to cycle through a full care TEAM comprised of doctors, therapists and resource supports. We are very fortunate to have a neurologist in Lincoln whose focus is on this disease and what can be done to serve its victims. Dr Gary Pattee is a caring physician but also active in drugs, treatments, therapies and the clinical trials necessary to gain some patients access and also to further the efforts towards the goals of prolonged quality of life and ultimately a cure. Not all patients in other communities have a doctor with this depth of knowledge and experience or connections. We meet with the physical therapist about weakness progression and our current concerns. The key focus for her is help in maintaining range of motion and managing muscle/body discomfort. It is important to note that PT for us is NOT trying to do strenuous exercise aimed at gaining strength or working to recover what was lost! (Sorry, I had a bad experience once with therapist not on my team and she tried to tell me we could get the strength back in my hand- she did not understand ALS). Then we see Occupational Therapy and tell her about any skills we are struggling to perform and she shares the latest tools, technology and “life hacks” that could accommodate those efforts. She focuses on maintaining independence and quality of life in balance with energy conservation. We also get a speech therapist, and she would typically run me through a battery of assessments- reading 10 sentences checking change in voice volume and ability to enunciate, breathing apparatus to measure inhale/exhale strength, chew and swallow a cookie and time test for drinking small cup of water. I kicked butt on those through many appointments and that would provide a positive boost for the day.   Later when I perform as well it prompted discussion about feeding tube and voice assist tech. It also determined when it was time to add a pulmonologist and some respiratory support - so I outsource for that doctor. At clinic we are always checked in on by the ALS in the Heartland folks- they offer support and share any tools, equipment or financial resources that might address needs that surfaced with any of the team that day. They really work to learn about our family specifics so they can best target services- like scholarships Lexie would be eligible for.   Finally, there are usually representatives from NuMotion (power chair company) and Prompt Care (group that services various respiratory gadgets) on site to meet with any patients who may need them.
As a support to this team, Cliff connected us with a home health care provider. While he is working, we have therapists in. Three days a week I work with either PT or OT who share and coordinate with my clinic team. I’ve also brought in speech therapy when I was learning new voice tech. This weekly support keeps my limbs stretched and has helped with timeliness of some important changes or adjustments in care. My friends would tell you I have a busy schedule!  So that’s what it takes to keep our ALS train on track

May 24 -- My ALS… I still want to go to all the things!  Love my active family and enjoy watching all the nieces and nephews and attending celebrations. The reality is that it is hard work making it happen. I feel like a failure- even when I know better. It’s just always been my thing, to BE THERE. Because it brings me joy.  It’s my love language.  But I was reading an ALS story from another family recently- did you know olympic skier Lindsey Vonn’s mom had this disease? Well, she was making every effort to spend time with her kids. The article states the kids “didn’t know that there was a cost for every one of her interactions.” And her physical therapist put it to them this way, “Your mom’s mind is writing checks her body can’t cash.” So… limits. I’ve had to pull back on the outings and bring some balance to the visitors coming to me. This means every interaction is extra special. And as we have been saying for four years, live streaming has been a game changer, huge! We have two televisions in our family room so we can watch a Lincoln kid and a Boone, IA kid compete at the same time! I love my people!

May 26 -- My ALS… When we renovated, we invested in a sleep number bed. We chose a split king mattress with adjustable head and feet. Goal was to avoid hospital bed for as long as possible.  Since then, still no hospital bed, but we’ve acquired many other pieces of equipment to manage the physical needs of a weakened body. I’ve mentioned most of the items in previous posts. Tonight we chose to show what they look like and to offer some perspective on the volume of stuff it takes to provide for me daily. So please take a look and listen to the video.

May 28 -- My ALS…we’ve always said we were like a team, Cliff and me. We play different positions on the team because we bring various skills and characteristics to our roles. I like to think that together, our strengths create a balanced game plan. Then this disease showed up to test our teamwork.  I like to believe we took on the early rounds like champs! The kinds of things I would need help with when “living in that straight jacket” would be very personal and typically private. I was ONLY comfortable showing that kind of vulnerability with ONE person, my husband. Due to my control issues and anxiety, Cliff was assigned a new role of Prime Caregiver , making his position on the team much harder and with no additional training or preparation time. What does a man do with that expectation? Who provides support? Kind of a lonely place and I selfishly put him there.  As leg strength and mobility came into play, Cliff and I operated in tandem pretty well. As long as I could actually participate in transfers, our 2-person team could play against the challenges of the day. But you see, the standard of care being lift with your legs so you save your back, cannot be assigned to Cliff. He only has one good knee for lifting. The other is only good for predicting a change in the weather relative to his level pain. So as my body has weakened to resemble more like a rag doll, Cliff’s back and physical health in general are compromised. The game has changed.  Most recently my eating and speaking abilities have been lost. We no longer share our evening meal. We watch a ball game or our evening favorite shows in relative silence. And the other night Cliff expressed through tears that he feels like he’s lost his best friend. This breaks my heart.  He feels like he is alone on an island. I will improve my text to speech skills so we visit again. But what else? We have been best friends for 37 years!   Our team is built on a firm foundation of faith, so Jesus Christ our Lord is the best member of our team, capable of carrying us to the buzzer. We will continue to adapt to our new challenges and move forward. We may need to expand our roster. Just know that Cliff could use some extra fans in the stands cheering him on.  This disease is showing us it’s ugliness and we feel a little out of our league.

May 29 -- My ALS… Current Reality .. Got a cold after graduation. Nasty sinus congestion and drainage leading to many exhausting cough attacks. Endless suctioning.  Efforts to eat were thwarted by the throat mucus preventing clean swallow. At bedtime I grew anxious about bi-pap fearing the terrible cough. Now my lungs have tightened up and I’m not sleeping well. And of course tight lungs mean minimal air power for voice. So I’m just a mess! Oh, and my neck muscles weakened, making me feel like a bobble head. It has been a game changing kind of month. This disease has progressed from rude inconvenience to evil thief.   It’s scary. My heart and mind are trapped inside a capsule that can’t express them.  But we’re living. Do the next thing.

May 30 -- I feel I should clarify that my misery of a cold plagued us mainly the second week of the month. But the fallout of it- losing eating and speaking- looms large. Have you tried to imagine your life without these abilities? Or your spouse without them? It’s next level cruel.
Thank you for indulging my efforts to open up about this journey and offer some perspective. Response has been very supportive and full of love and encouragement. To have such an army of prayer warriors is the greatest blessing.  This will be my last post for the month as I give myself tomorrow to spend with my grandbaby. Priorities! I’d like to post more from time to time. Writing is hard work and labor intensive when you type each letter and word with the focus of your eyeballs👀 Which I did for every post.
Love y’all