Wednesday, May 20, 2020
Bedrock and Joy
I got Jonathan up early this morning and he sat in his chair while I went for a walk with Jane Allen. She is such a good, good woman. Several months ago I was in a dark place mentally and emotionally. Jonathan told me I needed to get up earlier because I was missing the best part of the day. In the quiet of the morning we find great peace and inspiration. I have been trying harder to get he and I out of bed before the summer sun pokes its first rays. He has been right about mornings. He is right 99.5% of the time.
I walked for an hour, fed the tribe and myself breakfast and a made bacon for Jonathan. He still enjoys bacon and yogurt in the morning but passes on everything else. In addition to his morning indulgences I blended up leftovers, avocado and banana for his tube feed. By the time the morning kitchen ritual had finished we headed back to the bedroom for his usual shave and shower and PT. This morning he didn’t have it in him. He was too tired to shower and his hip was in too much pain to stand through the shower. I at least brushed his teeth and then put his bi-pap back on and snuggled him into his blanket so he could rest for a bit.
After he was settled in, I drained his cathetar bag. As I opened the valve on the bag and let it pour into the urinal under it, I listened to the clanking of dishes loading, and music jamming in the kitchen. The thought clearly came to my mind, "We will be okay." When Jonathan leaves us, whether it be days, weeks, months or years from now- he needs to know, we will be okay. We will be a people that will carry his torch strong and bright for eternal generations to come. "Bedrock and joy." Those were the two exact words that came to my mind. He has guided his family into a place that has the assurances of the plan of salvation. And we know that plan, centered in our Savior Jesus Christ. We believe it. We feel it daily. He has perfectly positioned his family to be recipients of the bedrock of the gospel and it will be our constant and carry us onward. Secondly, joy. As I felt the energy coming from dancing feet sliding across the floor to the load the dishwasher I felt the joy music brings. Jonathan has given each of us the gift of music. It lives inside of him and he has always shared it with us. It moves us to smiles and tears in the same breath. It will be our source of joy long after he is gone. And we will be okay. Miss him indescribably, yes. But 100% completely okay... because, with our Savior as his guide, this good man instilled within us bedrock and joy. No one worry too much - He's got a lot of good miles left on him.
I walked for an hour, fed the tribe and myself breakfast and a made bacon for Jonathan. He still enjoys bacon and yogurt in the morning but passes on everything else. In addition to his morning indulgences I blended up leftovers, avocado and banana for his tube feed. By the time the morning kitchen ritual had finished we headed back to the bedroom for his usual shave and shower and PT. This morning he didn’t have it in him. He was too tired to shower and his hip was in too much pain to stand through the shower. I at least brushed his teeth and then put his bi-pap back on and snuggled him into his blanket so he could rest for a bit.
After he was settled in, I drained his cathetar bag. As I opened the valve on the bag and let it pour into the urinal under it, I listened to the clanking of dishes loading, and music jamming in the kitchen. The thought clearly came to my mind, "We will be okay." When Jonathan leaves us, whether it be days, weeks, months or years from now- he needs to know, we will be okay. We will be a people that will carry his torch strong and bright for eternal generations to come. "Bedrock and joy." Those were the two exact words that came to my mind. He has guided his family into a place that has the assurances of the plan of salvation. And we know that plan, centered in our Savior Jesus Christ. We believe it. We feel it daily. He has perfectly positioned his family to be recipients of the bedrock of the gospel and it will be our constant and carry us onward. Secondly, joy. As I felt the energy coming from dancing feet sliding across the floor to the load the dishwasher I felt the joy music brings. Jonathan has given each of us the gift of music. It lives inside of him and he has always shared it with us. It moves us to smiles and tears in the same breath. It will be our source of joy long after he is gone. And we will be okay. Miss him indescribably, yes. But 100% completely okay... because, with our Savior as his guide, this good man instilled within us bedrock and joy. No one worry too much - He's got a lot of good miles left on him.
Monday, May 18, 2020
The Lord Loves Effort
I went for a walk around the park this morning. As I was leaving the house, I turned on my headphones and a song list automatically started playing from my phone that I hadn't intentionally planned to listen to. It had a few catchy tunes so I left it running while I began my walk. After a few songs, Ed Sheeran's Song "Perfect" came up. As I listened to the song it took me back to a moment over a decade ago...
Jonathan and I were living in North Liberty, IA so he could attend the University of Iowa Nursing Anesthesia School. Earlier in the week he helped the Elder's Quorum with a move and while cleaning out a storage shed someone found a rusted old tricycle. One motioned to throw it away, but Jonathan doesn't work quite like that, and saw a glimmer of potential in the rusted metal scrap. He scooped it up and hauled it home.
The weekend came and Jonathan set to work reclaiming the rusted tricycle. He disassembled each piece of it and spent countless hours washing and scrubbing the pedals and wheels and scraping rust from the frame. As the days passed he would eek out a few moments here and there to work on the tricycle and prep it for the final stages of new paint and reassembly. The eventual goal being to present our two little boys a shiny new tricycle.
One particular evening of "Operation Tricycle Reclamation" came and I put the boys to bed and intended to set to work finishing up a few dishes and putting the house back together before the start of another day. I was standing in the hallway next to the door of the garage and paused, I could stay in the house and clean and tidy things up or I could walk out the garage door and be with Jonathan. I had no intention of actually helping him in any way, but just simply sit and watch him work and keep him company while he worked. I remember clearly debating what to do. I stopped everything that called to me in the house, and walked out the garage door. I sat on the stairs of the garage and we chatted and he sanded and showed off his work. Hours passed and I just sat there, occasionally offering to help, but by in large, did nothing useful but be with him.
That night has stayed with me for over a decade. As I walked around the park this morning I found myself grinning when I thought about that night we spent together in the garage. I checked nothing off my to-do list. My assistance in making the tricycle shiny was next to nil. I was just simply there.
My thoughts turned to a recent General Conference talk by Joy D. Jones where President Russel M. Nelson said this: "The Lord loves effort, because effort brings rewards that can’t come without it."
I marveled at the unique nature of each of our efforts that night. Obviously, Jonathan's weeks of effort conscientiously scrubbing, scraping, sanding and painting would bring a great reward... But I left a sink of soapy dishwater, toys on the floor, and a broom in the closet, to be still. Though it seems counterintuitive that sitting and watching someone work requires effort - when there are things undone calling to you - sitting requires great effort! But that effort, that night, has been rewarded unmeasurably. Those moments with Jonathan were hallowed. I have reflected on that night many times over the years and it has become a witness in my own soul of my desire to love the man I married. To choose him. Over and over again, to seek him out, leave undone things undone, and choose him.
I bear my witness that our efforts don't always look the same. The conscientious use of our agency to discern, decide and act, requires effort. Love requires effort. Sometimes, effort means doing less. And sometimes it requires great sacrifice. But as was promised, this effort brings rewards that can't come without it... and this is pleasing to God. The God whom I love, and who daily exerts effort to guide me home.
Shall we not all ask within if there be but a smidge of effort we yet can give?
Monday, May 11, 2020
Caregivers
Jonathan's Facebook Post from Today:
Day #11:
I’ve spoken briefly about caregiving and ALS. For the most part, Amber has been my sole caregiver. Our children sometimes help to feed me, or empty my catheter bag, but they don’t like it. It’s not natural for a young child to have to take care of their father. And, as far as eating goes, it takes a long time…like 90 minutes if I eat a full meal. Fortunately, I had a feeding tube placed a year and a half ago, so I get most of my food through that route. But if we are having something really tasty, and if I have the stamina, I still enjoy tasting my food. (Who doesn’t, right?!?)
Last fall we hired someone to come in during the week to help me in the mornings by feeding me breakfast, and then helping me to shower and get dressed. This would allow Amber time to help our children get off to school in the morning. That was working out fairly well until the quarantine started. Now we’re back to Amber doing everything. In the future, I will require more assistance with transferring, bathing, and positioning. Eventually I will require 24 hour care as I will need a ventilator for respiratory support.
Needing a caregiver is interesting to say the least. It is quite humbling! You are required to open up your home to individuals to come into your most personal of spaces to provide care. It is certainly an adjustment to go from entirely independent to entirely dependent. Think for a moment about what you do in the morning to get ready for the day. Now imagine not being able to do any of it. You have to rely on someone to do it for you.
Ready to get out of bed? You have to wait for someone to help you (sometimes this requires lying awake for hours until either someone wakes up to help you, or the pain in your shoulders/hips/lower back becomes intolerable from lying in one position for hours that you can’t tolerate it anymore and you wake someone up). Feeling hungry? You have to wait for someone to feed you – and you chew so slowly that most everything you eat is room temperature anyway. Ready to shower, brush your teeth, or shave? Well, get use to having someone else do it for you. As an experiment, you might try having someone else brush your teeth just to see how that goes. Chances are it will be an unusual experience. Needless to say, having someone attend to your every need is nothing short of a life adjustment.
We have had an enormous amount of help over the past few years with people just stopping by to bring dinner, groceries, helping to babysit our kids, cleaning our home, running carpool, and pretty much anything you could think of. Amber’s sister, Cindi, has been flying in to spend a few days each month to help out around the house and to make fun things with our kids. Our parents have also been a big help with each of them coming to stay for extended periods to lighten our load. These seemingly small acts of service have been a HUGE blessing! Anything that has been done to lighten Amber’s load is a big help. I couldn’t possibly list every one who has helped our family because there are so many.
Two individuals stand out though. Last Fall, Melanie Anderson started taking our two youngest kids in the mornings twice a week. She has helped our family before by watching our kids, but this was different. This was a regularly scheduled act of service. This was her idea. This was a way for one redhead to show love to our little redhead. She did this to allow time for Amber to feed me breakfast and shower me in the mornings. Then we hired a bath aide to help me, but she continued to take the kids to allow Amber to have to time to do other responsibilities or to simply rest. The kids would always come home happy and with some kind of “treasure” from Melanie’s treasure chest. It has been a huge help, and I am extremely grateful for her service.
The other individual started helping our family about 6 months after my diagnosis and hasn’t stopped. Initially, Cambrie Nelson would take the youngest kids one or two days a week for a few hours, or she would randomly show up with a meal and then do our dishes or clean our bathroom just to help out. She helped to coordinate meals when our family was in particular need. After about a year of helping our family, she started doing physical therapy to help me passively stretch my arms and legs three days a week. She developed a routine of stretches that she would do just to move my limbs and help prevent my joints from becoming stiff or frozen (permanently unable to move). She came every week and continued until last fall, when she started coming 5 days a week. In addition, she also took our two youngest kids one morning a week to allow time for Amber to help me, or to just be able to do whatever she needed to do. Outside of my family, she has given me more help than I could ever thank her for. I honestly believe that I don’t have more pain in my shoulders and hips because of the consistent care she has given to me and my family.
The other day I said that until there is a cure, technology is the cure. I honestly believe that! However, it has also been said that until there’s a cure, there’s care. I have also found this to be true, and I’m grateful for all of those individuals that have so lovingly given of themselves. Thank You!!
#ALSAwarenessMonth #ALS #HopeIsNeverLost #NoWhiteFlags #ItsCoolToCare
I’ve spoken briefly about caregiving and ALS. For the most part, Amber has been my sole caregiver. Our children sometimes help to feed me, or empty my catheter bag, but they don’t like it. It’s not natural for a young child to have to take care of their father. And, as far as eating goes, it takes a long time…like 90 minutes if I eat a full meal. Fortunately, I had a feeding tube placed a year and a half ago, so I get most of my food through that route. But if we are having something really tasty, and if I have the stamina, I still enjoy tasting my food. (Who doesn’t, right?!?)
Last fall we hired someone to come in during the week to help me in the mornings by feeding me breakfast, and then helping me to shower and get dressed. This would allow Amber time to help our children get off to school in the morning. That was working out fairly well until the quarantine started. Now we’re back to Amber doing everything. In the future, I will require more assistance with transferring, bathing, and positioning. Eventually I will require 24 hour care as I will need a ventilator for respiratory support.
Needing a caregiver is interesting to say the least. It is quite humbling! You are required to open up your home to individuals to come into your most personal of spaces to provide care. It is certainly an adjustment to go from entirely independent to entirely dependent. Think for a moment about what you do in the morning to get ready for the day. Now imagine not being able to do any of it. You have to rely on someone to do it for you.
Ready to get out of bed? You have to wait for someone to help you (sometimes this requires lying awake for hours until either someone wakes up to help you, or the pain in your shoulders/hips/lower back becomes intolerable from lying in one position for hours that you can’t tolerate it anymore and you wake someone up). Feeling hungry? You have to wait for someone to feed you – and you chew so slowly that most everything you eat is room temperature anyway. Ready to shower, brush your teeth, or shave? Well, get use to having someone else do it for you. As an experiment, you might try having someone else brush your teeth just to see how that goes. Chances are it will be an unusual experience. Needless to say, having someone attend to your every need is nothing short of a life adjustment.
We have had an enormous amount of help over the past few years with people just stopping by to bring dinner, groceries, helping to babysit our kids, cleaning our home, running carpool, and pretty much anything you could think of. Amber’s sister, Cindi, has been flying in to spend a few days each month to help out around the house and to make fun things with our kids. Our parents have also been a big help with each of them coming to stay for extended periods to lighten our load. These seemingly small acts of service have been a HUGE blessing! Anything that has been done to lighten Amber’s load is a big help. I couldn’t possibly list every one who has helped our family because there are so many.
Two individuals stand out though. Last Fall, Melanie Anderson started taking our two youngest kids in the mornings twice a week. She has helped our family before by watching our kids, but this was different. This was a regularly scheduled act of service. This was her idea. This was a way for one redhead to show love to our little redhead. She did this to allow time for Amber to feed me breakfast and shower me in the mornings. Then we hired a bath aide to help me, but she continued to take the kids to allow Amber to have to time to do other responsibilities or to simply rest. The kids would always come home happy and with some kind of “treasure” from Melanie’s treasure chest. It has been a huge help, and I am extremely grateful for her service.
The other individual started helping our family about 6 months after my diagnosis and hasn’t stopped. Initially, Cambrie Nelson would take the youngest kids one or two days a week for a few hours, or she would randomly show up with a meal and then do our dishes or clean our bathroom just to help out. She helped to coordinate meals when our family was in particular need. After about a year of helping our family, she started doing physical therapy to help me passively stretch my arms and legs three days a week. She developed a routine of stretches that she would do just to move my limbs and help prevent my joints from becoming stiff or frozen (permanently unable to move). She came every week and continued until last fall, when she started coming 5 days a week. In addition, she also took our two youngest kids one morning a week to allow time for Amber to help me, or to just be able to do whatever she needed to do. Outside of my family, she has given me more help than I could ever thank her for. I honestly believe that I don’t have more pain in my shoulders and hips because of the consistent care she has given to me and my family.
The other day I said that until there is a cure, technology is the cure. I honestly believe that! However, it has also been said that until there’s a cure, there’s care. I have also found this to be true, and I’m grateful for all of those individuals that have so lovingly given of themselves. Thank You!!
#ALSAwarenessMonth #ALS #HopeIsNeverLost #NoWhiteFlags #ItsCoolToCare
Sunday, May 10, 2020
ALS Mother's Day
Jonathan's Facebook Post from Today:
These were my thoughts on Mother's Day:
Day #10:
“God could not be everywhere, and therefore he made mothers.“ – Rudyard Kipling
Happy Mother’s Day! I am so grateful for my dear wife and mother to my children, for my own mother and mother-in-law, and for the many mothers and women who have mothered me and my family throughout my life.
I’m simply grateful to my own mother who sacrificed for me and my siblings so that we might enjoy our youth. She sacrificed much for me to help me become who I am today. I’m eternally grateful to her.
I know that my journey is made easier because of MANY women who attend to the needs of me and my family. To them, I say Thank You!
If there was one thing I could change, I wish that all women could realize their divine worth and to know that their efforts are enough! This world is divine because women were placed upon the earth. Women have given of themselves so wholly and completely to raise families and succor the downtrodden. It has been said that if mothers of the world could simply meet each other, there would be no more wars. Such is the power of a mother!
#ALSAwarenessMonth #AMotherIsLove #MothersDay2020 #HopeIsNeverLost
Happy Mother’s Day! I am so grateful for my dear wife and mother to my children, for my own mother and mother-in-law, and for the many mothers and women who have mothered me and my family throughout my life.
I’m simply grateful to my own mother who sacrificed for me and my siblings so that we might enjoy our youth. She sacrificed much for me to help me become who I am today. I’m eternally grateful to her.
I know that my journey is made easier because of MANY women who attend to the needs of me and my family. To them, I say Thank You!
If there was one thing I could change, I wish that all women could realize their divine worth and to know that their efforts are enough! This world is divine because women were placed upon the earth. Women have given of themselves so wholly and completely to raise families and succor the downtrodden. It has been said that if mothers of the world could simply meet each other, there would be no more wars. Such is the power of a mother!
#ALSAwarenessMonth #AMotherIsLove #MothersDay2020 #HopeIsNeverLost
Two years ago Jonathan and I loaded up the 7 kids and decided to make a memory - we headed for Six Flags Amusement Park for fun to be had by all. The three big boys made a pact to conquer every manly ride in the park. Consequently, they abandoned Jonathan and I, and the 4 younger kids to spend our time on the less thrilling rides. Michael and I decided to go get soda, and left Jonathan watching the 3 youngest kids on a gargantuan treehouse structure with swinging bridges, slides, and spraying water. It was a grand adventure! Unbeknownst to me standing in line, Jonathan had to go to the bathroom and the 45 minute wait to get soda was wearing on him. Recognizing that he was nearing a point of emergency he left for the bathroom just before I got back to the treehouse. Due to the growing affects of ALS, his weakening hands, unpredictable balance and bowel changes resulted in a grown man texting an SOS from within the stall of the men’s restroom with poop down to his ankles. He couldn’t get his pants down in time and I hand’t been there to help him. I sat there in an awful pickle. The big boys were gone, Jonathan couldn’t clean himself up and I had four small children. I was in an earnest need for help. I said a fervent prayer and looked around. Standing along the play structure was a woman whose heart I trusted. I explained to her that I had a disabled husband who was in great need of assistance in the bathroom and that I had 4 children and asked if she could please help me. I didn’t know her. I had never spoken a word to her, but I knew she had a mother’s heart. I pointed out my four kids and tried to help her remember what color of clothing they were wearing and asked if she would please, please keep them safe until I return. And with every ounce of faith I could muster, I pleaded with God to keep my children safe and I went to assist Jonathan. Cleaning up a grown man who has found himself in such an unruly predicament is no small feat. Grooming him to the point of being able to walk out of the restroom in a dignified manner required many, many, baby wipes and even more time. After what must have been a minimum of 30 minutes hunkered in a stall in the men’s restroom, I ducked my head and dashed past the 4 or 5 gentlemen perched at urinals and ran to find my kids. Knowing God was watching them even closer than I, I approached this seasoned woman I had left as sentinel and found each of my kids still playing, not recognizing that I had even been gone. This blessed woman, this complete stranger, this divine daughter of God, with a mother’s heart, was there when I needed her.
Dear sisters, she is but one of an innumerable army.
To each of you who has been there, to every mother heart that has responded to the call to nurture even when the dumplings didn't come from your womb - thank you.
We each have moments, days, weeks, years, and seasons when we realize we are broken cookies - that no matter how hard we try, parts of our lives crumble- and we are simply not enough. God didn’t send just one mother, but a multitude of mothers to guide His children home. Lifting where we stand, no matter what crumbs lie at our own feet, we -God’s mothers, have an incalculable power to do good. Let us continue on, united, in so great a call
Dear sisters, she is but one of an innumerable army.
To each of you who has been there, to every mother heart that has responded to the call to nurture even when the dumplings didn't come from your womb - thank you.
We each have moments, days, weeks, years, and seasons when we realize we are broken cookies - that no matter how hard we try, parts of our lives crumble- and we are simply not enough. God didn’t send just one mother, but a multitude of mothers to guide His children home. Lifting where we stand, no matter what crumbs lie at our own feet, we -God’s mothers, have an incalculable power to do good. Let us continue on, united, in so great a call
Saturday, May 9, 2020
ALS Heros
Jonathan's Facebook Post for Today:
The real hero in my ALS journey is my dear companion, Amber. I cannot even begin to describe how much she does for me and our family! Being a spouse caregiver is hard! Right before the birth of our first child, she gave up her career to stay home and raise our children. That has been a beautiful blessing for both of us as I continued to work and provide for our family. She made great sacrifices while I was in school finishing up my degree as a nurse anesthetist. There was about a 9 month period where I physically was not present in the home except for the occasional weekend. She diligently cared for our two young children without having family nearby to offer a reprieve. As we moved to Southern Iowa, life was beginning to blossom as we settled into a new home, new career, and added two more children to our family. It was a beautiful time for both of us, and she continued to take care of our family in the best way possible.
As life would have it, just as we were getting comfortable with the way things were, we felt like we needed to move back West to be closer to family. So, I packed up my truck, took the three oldest boys, and headed West to start a new job. I left Amber and the baby to finish packing our home, getting it ready to sell, and then to join me in Oregon. She was gracious through it all.
After living in Oregon for 2 years, adding a little girl to our brood of boys, and moving an additional time, I was called to be a bishop for our church congregation, once again leaving Amber to raise our family while I worked and attended to church responsibilities. Over the course of the next 3 years, we added two more children to the mix. That was where we were when I was diagnosed with ALS.
Amber continues to selflessly take care of our 7 children, but now she has the added responsibility to care for me. I’m really worse than a newborn baby! She feeds me, she toilets me, she showers me, she dresses me, she helps me move throughout the day, she takes me to my appointments and helps me get out of the house. She then gets me ready for bed, gets me into bed, and puts my bipap mask on. Lest you think she quits there, she wakes up in the middle of the night to adjust me or help me to roll over in bed, and sometimes she has to wake up to adjust my breathing mask. She does this routine every day...by herself...no weekends off!
This might not sound a whole lot different than caring for a baby, except this baby doesn’t weigh 10 pounds. And most babies grow and start to do things independently for themselves, but it’s just the opposite with me. I become more dependent every day for every single thing. And then there’s the little things throughout the day like scratching an itch, wiping drool off my face, cleaning my glasses or my eyegaze, and feeding me a snack. She does all of this while continuing to take care of 7 children, 2 of which can be found hanging on her at any moment of the day.
We are a normal family. What I mean by that is the kids sometimes fight, they whine, they don’t always want to do their chores, they make messes, they get hurt and cry, they demand attention, and they throw temper tantrums when they don’t get their way. Normally there are two parents to help out, to scoop a crying child up, or to kiss them and assure them that it’s going to be okay. But this responsibility largely falls on Amber now. She spends an enormous amount of time helping our children.
When does she take care of herself you might ask? Well, she doesn’t. She continues to go about, giving selflessly of herself for those she loves, and she does it with a cheerful attitude and faith in God. Now she has an occasional bad day, but who wouldn’t under this much stress and pressure making demands of your time. Thankfully, that’s where good friends step in to buoy her up!
Amber is truly the hero! I just sit here (literally) in awe at the amazing woman, wife, and mother she has become! We have enjoyed 18 years of marriage, and we hope to enjoy many more. I love her with all of my heart and I’m grateful that we have eternity to spend together! It will be a grand adventure!!
#ALSAwarenessMonth #ALS #HopeIsNeverLost #TheRealHero
Friday, May 8, 2020
Wheelchair Adventures
Jonathan's Facebook Post Today:
Day #8:
If there’s one part of ALS that is really quite fun, it’s the wheelchair. I’ve always enjoyed going places, getting out and seeing new things, and going fast! For those who really know me, I had a bit of a lead foot in a car. Unfortunately, I’ve had my share of speeding tickets. Thankfully they don’t ticket people in wheelchairs! If they did, I would probably be the first to have one! I definitely push the limit on walking speed (my wheelchair maxes out at 7.5 mph – that’s an 8 minute mile for any runners out there). It’s fun if I can maintain the pressure on my joystick, but unfortunately it’s becoming harder every day to control. Eventually I will control my wheelchair with my eyes, which will slow me down a lot.
I can honestly say that I have had a lot of fun with my wheelchair. It provides a great sense of liberty and independence. But there has also been a few unwanted adventures also. When I first started using a wheelchair about 18 months after my diagnosis, it gave me a HUGE sense of freedom! I could still walk at the time, but I was a fall risk. My biggest problem was losing control of my neck muscles, so I couldn’t hold my head up. I’ve always been told I have a big head, so this proved it. Seriously though, I probably would have walked longer if I could’ve held up my head.
About 2 months after I started using a wheelchair, we took a trip to Idaho to visit family. While in Idaho Falls, we went for a walk around the river. I frequently had a child on my lap and sometimes two. I became a real pack horse! Anyway, we were just past halfway around the river, and naturally, just past the restrooms when my 5 year old daughter said she needed to go to the bathroom. I already had my infant girl in my lap, but we decided to have her sister get on my lap also so I could race her back to the restrooms. At this point I still had excellent control of my wheelchair. We arrived at the bathrooms, but my little girl was in such a hurry to go potty that she tried to hop off my wheelchair before I was ready and before I had come to a complete stop. As she hopped off, her blanket got snagged on my joystick, which caused an immediate 90 degree turn and a full speed departure off the sidewalk over a 10+ foot drop on the banks of the Snake River. Fortunately, my arms were weak enough by this point, so as we went over the edge I was unable to hold on to my infant daughter, and she fell off my lap and into some bushes. As I continued falling with the wheelchair, I miraculously fell out in a heap between two volcanic boulders that were sticking out of the ground. My 400 pound wheelchair continued on its way rolling 3 more times before coming to a stop inches from the edge of the river.
Well, if you don’t believe in guardian angels, let me tell you they are real. Within seconds an army of people came to our rescue. My little girl was picked up out of the bushes and found to be unharmed except for a few tiny scratches. I was a bit more battered and bruised, but nothing was broken and I didn't hit my head or lose consciousness. Two people helped me up and then back up the hill. It took 6 people to rescue my wheelchair and to haul it back up to the sidewalk. My 5 year old was witness to the whole thing and lost the urge to use the restroom. We gathered ourselves back together in the wheelchair that only suffered a broken armrest, let the 5 year old finally use the restroom, assured everyone who helped us that we were okay, and then continued our journey around the river to catch up to the rest of the family.
We were witnesses that day to a modern miracle. If my wheelchair and myself totaling 600 pounds combined weight had landed on my infant daughter, it would have crushed her. If I had been wearing my seatbelt, I would have been secured to the wheelchair and would have suffered a severe head injury or worse as the wheelchair went end over end several times. But miraculously, none of us were injured more than a few scrapes and bruises. We truly felt blessed!
I’ve had plenty of great experiences in my wheelchair! Shortly after the above accident, we strapped my wheelchair on the back of a 32 ft motorhome and drove across America. In 5 weeks, we traveled 9,161 miles, visited 33 states, and saw some of the most amazing sights in this beautiful country. The next year we visited 3 more states over 3 weeks. Except for a minor incident at the Grand Canyon parking lot where I went off a curb and tipped over my wheelchair after star gazing, we had an amazing time without any major accident. The wheelchair has become my new legs, and without it, I would be confined to a chair or bed by this point. It truly is life-changing!!
I've included some videos of the adventures!
#ALSAwarenessMonth #ALS #NeedForSpeed #HopeIsNeverLost
If there’s one part of ALS that is really quite fun, it’s the wheelchair. I’ve always enjoyed going places, getting out and seeing new things, and going fast! For those who really know me, I had a bit of a lead foot in a car. Unfortunately, I’ve had my share of speeding tickets. Thankfully they don’t ticket people in wheelchairs! If they did, I would probably be the first to have one! I definitely push the limit on walking speed (my wheelchair maxes out at 7.5 mph – that’s an 8 minute mile for any runners out there). It’s fun if I can maintain the pressure on my joystick, but unfortunately it’s becoming harder every day to control. Eventually I will control my wheelchair with my eyes, which will slow me down a lot.
I can honestly say that I have had a lot of fun with my wheelchair. It provides a great sense of liberty and independence. But there has also been a few unwanted adventures also. When I first started using a wheelchair about 18 months after my diagnosis, it gave me a HUGE sense of freedom! I could still walk at the time, but I was a fall risk. My biggest problem was losing control of my neck muscles, so I couldn’t hold my head up. I’ve always been told I have a big head, so this proved it. Seriously though, I probably would have walked longer if I could’ve held up my head.
About 2 months after I started using a wheelchair, we took a trip to Idaho to visit family. While in Idaho Falls, we went for a walk around the river. I frequently had a child on my lap and sometimes two. I became a real pack horse! Anyway, we were just past halfway around the river, and naturally, just past the restrooms when my 5 year old daughter said she needed to go to the bathroom. I already had my infant girl in my lap, but we decided to have her sister get on my lap also so I could race her back to the restrooms. At this point I still had excellent control of my wheelchair. We arrived at the bathrooms, but my little girl was in such a hurry to go potty that she tried to hop off my wheelchair before I was ready and before I had come to a complete stop. As she hopped off, her blanket got snagged on my joystick, which caused an immediate 90 degree turn and a full speed departure off the sidewalk over a 10+ foot drop on the banks of the Snake River. Fortunately, my arms were weak enough by this point, so as we went over the edge I was unable to hold on to my infant daughter, and she fell off my lap and into some bushes. As I continued falling with the wheelchair, I miraculously fell out in a heap between two volcanic boulders that were sticking out of the ground. My 400 pound wheelchair continued on its way rolling 3 more times before coming to a stop inches from the edge of the river.
Well, if you don’t believe in guardian angels, let me tell you they are real. Within seconds an army of people came to our rescue. My little girl was picked up out of the bushes and found to be unharmed except for a few tiny scratches. I was a bit more battered and bruised, but nothing was broken and I didn't hit my head or lose consciousness. Two people helped me up and then back up the hill. It took 6 people to rescue my wheelchair and to haul it back up to the sidewalk. My 5 year old was witness to the whole thing and lost the urge to use the restroom. We gathered ourselves back together in the wheelchair that only suffered a broken armrest, let the 5 year old finally use the restroom, assured everyone who helped us that we were okay, and then continued our journey around the river to catch up to the rest of the family.
We were witnesses that day to a modern miracle. If my wheelchair and myself totaling 600 pounds combined weight had landed on my infant daughter, it would have crushed her. If I had been wearing my seatbelt, I would have been secured to the wheelchair and would have suffered a severe head injury or worse as the wheelchair went end over end several times. But miraculously, none of us were injured more than a few scrapes and bruises. We truly felt blessed!
I’ve had plenty of great experiences in my wheelchair! Shortly after the above accident, we strapped my wheelchair on the back of a 32 ft motorhome and drove across America. In 5 weeks, we traveled 9,161 miles, visited 33 states, and saw some of the most amazing sights in this beautiful country. The next year we visited 3 more states over 3 weeks. Except for a minor incident at the Grand Canyon parking lot where I went off a curb and tipped over my wheelchair after star gazing, we had an amazing time without any major accident. The wheelchair has become my new legs, and without it, I would be confined to a chair or bed by this point. It truly is life-changing!!
I've included some videos of the adventures!
#ALSAwarenessMonth #ALS #NeedForSpeed #HopeIsNeverLost
Thursday, May 7, 2020
When ALS Has to Go to the Bathroom
Jonathan's Facebook Post for Today:
Day #7:
Well, let’s be honest. When you are diagnosed with any kind of illness/disease that limits your mobility or the use of your hands, it becomes a problem really quick. This is life with ALS. Though your hands or legs don’t work, your kidneys and bowels are still perfectly normal, and they continue to do perfectly normal things. Let’s just say that this was and is a continuing challenge!
With the loss of hand function early on, it was challenging to stay independent. I was grateful for scrubs – no zippers or snaps! I could simply untie them, do my business, and tie them back up. Pants were more of a challenge. I used a type of zipper pull for awhile that had a loop on it that I could slip my finger in to pull my zipper up and down. But, as with anything involving ALS, once you find a solution to a problem, your condition has changed enough that you can really only use it for a short time before the task becomes impossible. Before long, my zipper pulls were completely useless, and I had to wear pants or shorts with an elastic waistband. Eventually, I could only wear shorts because the pants were too hard to get up and down. I hated being in shorts all the time!
It would be a perfect world if you could always plan your bathroom breaks and never have any inconvenience. But, alas, such is not the case! Early on, I would be home alone and have to use the bathroom, but in my efforts to get there I would either fall, have an accident, or both. Once I got up in the middle of the night to go to the bathroom and lost my balance. I ended up on the floor wedged between the wall and the toilet. The worst part though, was on my way down I managed to rip the toilet paper holder off the wall and break the plumbing to the toilet. So I was laying there in pain, tightly wedged, with water running EVERYWHERE!! Oh, the memories!
There is an interesting dichotomy that exists with ALS. In one moment people can be singing your praises, and in the next you can be sitting in your own poop. It’s uncomfortable, but a reality! Thankfully it’s not an every day experience.
I can not express enough gratitude for catheters, leg bags, baby wipes, and bidets. In fact, I wonder even more now why bidets are not more common in America! All I can say is they are WAY more sanitary!
So, I hope I haven’t been too personal in this post… Just keeping it real.
#ALSAwarenessMonth #ALS #HopeIsNeverLost
Well, let’s be honest. When you are diagnosed with any kind of illness/disease that limits your mobility or the use of your hands, it becomes a problem really quick. This is life with ALS. Though your hands or legs don’t work, your kidneys and bowels are still perfectly normal, and they continue to do perfectly normal things. Let’s just say that this was and is a continuing challenge!
With the loss of hand function early on, it was challenging to stay independent. I was grateful for scrubs – no zippers or snaps! I could simply untie them, do my business, and tie them back up. Pants were more of a challenge. I used a type of zipper pull for awhile that had a loop on it that I could slip my finger in to pull my zipper up and down. But, as with anything involving ALS, once you find a solution to a problem, your condition has changed enough that you can really only use it for a short time before the task becomes impossible. Before long, my zipper pulls were completely useless, and I had to wear pants or shorts with an elastic waistband. Eventually, I could only wear shorts because the pants were too hard to get up and down. I hated being in shorts all the time!
It would be a perfect world if you could always plan your bathroom breaks and never have any inconvenience. But, alas, such is not the case! Early on, I would be home alone and have to use the bathroom, but in my efforts to get there I would either fall, have an accident, or both. Once I got up in the middle of the night to go to the bathroom and lost my balance. I ended up on the floor wedged between the wall and the toilet. The worst part though, was on my way down I managed to rip the toilet paper holder off the wall and break the plumbing to the toilet. So I was laying there in pain, tightly wedged, with water running EVERYWHERE!! Oh, the memories!
There is an interesting dichotomy that exists with ALS. In one moment people can be singing your praises, and in the next you can be sitting in your own poop. It’s uncomfortable, but a reality! Thankfully it’s not an every day experience.
I can not express enough gratitude for catheters, leg bags, baby wipes, and bidets. In fact, I wonder even more now why bidets are not more common in America! All I can say is they are WAY more sanitary!
So, I hope I haven’t been too personal in this post… Just keeping it real.
#ALSAwarenessMonth #ALS #HopeIsNeverLost
Wednesday, May 6, 2020
Voice Generation and Retina Tracking
Jonathan's Facebook Post for today:
Day #6:
If you’ve followed along with my posts the past few days, you know that there is no cure for ALS. That being said, I think there have been significant advancements in technology over the last 20 years that allow a person living with ALS to have some kind of independence and ability to communicate. Specifically, I want to talk about Voice Banking and Eyegaze technology.
Shortly after I was diagnosed with ALS, I began the process of voice banking. This entails using an internet software to record a series of sentences with the goal of capturing the normal sounds of your voice. The software then converts your voice into a synthetic voice that can be used to communicate, since all people with ALS eventually lose the ability to talk. It isn’t perfect, but it’s better than nothing.
Eyegaze technology uses an infrared light and camera to track the movement of your eyes (by the reflection of the retina). This is life-changing technology. With my eyegaze, I can type words one letter at a time, and then use software to speak using my synthetic voice. I can also use my eyegaze as a mouse to surf the Internet, compose emails or Facebook posts, use online banking, pay bills, and pretty much anything else you do on a computer. However, I do miss my iPhone!
These two technologies combined make a huge difference for someone living with ALS. It has been said that until there’s a cure, technology is the cure. I honestly believe that, and I’m grateful for it
#ALSAwarenessMonth #HopeIsNeverLost #GratefulToHaveAVoice
Day #6:
If you’ve followed along with my posts the past few days, you know that there is no cure for ALS. That being said, I think there have been significant advancements in technology over the last 20 years that allow a person living with ALS to have some kind of independence and ability to communicate. Specifically, I want to talk about Voice Banking and Eyegaze technology.
Shortly after I was diagnosed with ALS, I began the process of voice banking. This entails using an internet software to record a series of sentences with the goal of capturing the normal sounds of your voice. The software then converts your voice into a synthetic voice that can be used to communicate, since all people with ALS eventually lose the ability to talk. It isn’t perfect, but it’s better than nothing.
Eyegaze technology uses an infrared light and camera to track the movement of your eyes (by the reflection of the retina). This is life-changing technology. With my eyegaze, I can type words one letter at a time, and then use software to speak using my synthetic voice. I can also use my eyegaze as a mouse to surf the Internet, compose emails or Facebook posts, use online banking, pay bills, and pretty much anything else you do on a computer. However, I do miss my iPhone!
These two technologies combined make a huge difference for someone living with ALS. It has been said that until there’s a cure, technology is the cure. I honestly believe that, and I’m grateful for it
#ALSAwarenessMonth #HopeIsNeverLost #GratefulToHaveAVoice
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| (Oct 2017) Cambrie Nelson and Cheri Johnston are our voice angels. For weeks, these two ladies watched our littles for hours so we could crawl inside of our closet and hide day after day. Jonathan and I spent MANY hours recording his voice. We set up two chairs in our closet crammed with clothing and then covered ourselves with blankets. We turned out the light and eliminated every accessory sound possible. Using his high quality aviation headset, we recorded him speaking 1,600 phrases. It took many hours. I ran the computer and started and stopped the recorder after each phrase. Jonathan sat and read aloud. We would have to go back over each phrase and make sure it sounded accurate and was recorded properly. We established a rhythm of him taking a deep breath, me prepping the recorder, prepping the phrase, him speaking and me stopping the recorder. The rhythm worked well... but it was MONOTONOUS, and dark, and warm, and there were blankets piled all around. And there were several occasions Jonathan would draw a deep breath, and the person in charge of starting the recorder missed her cue - well, because she had entered a coma and was sound asleep sitting straight up. BUT WE PERSEVERED DANG IT. And with the assistance of the company, Model Talker, Jonathan now has a synthetic voice. Looking back I wish we would have started the process sooner. He was loosing the ability to pronounce the "d" sound at the ends of his words, but by in large we captured the authentic sounds of his voice. It really is quite incredible what we can do. |
Here is a video of a presentation Jonathan gave to Andrew's elementary classroom last year. He typed the presentation with his eyes and used his synthetic voice to share it.
This man is kind of ridiculously awesome with his eyes. He has become a master of all things retina activated. Any man that can file an entire income tax return multiple years in row with the SOLITARY USE OF HIS EYES is my kind of man. He absolutely knows no boundaries. If someone is going to figure out how to do something well, regardless of circumstances, it is this man. Oh, how I love him.
Tuesday, May 5, 2020
The Taller You Are, The Harder You Fall
Here's another peak into life with ALS.
Picture this: You are standing still with your arms at your sides. Without warning, you start to sense that you are losing your balance, but you haven’t moved. Suddenly, you start to fall but are unable to move your feet fast enough to regain your balance, and you can’t move your arms to stop or break your fall (think of a tree). You just sort of watch the ground getting closer, realizing that there is nothing you can do but prepare for impact. It’s gonna hurt! Bad!! And then you smack the ground, face first, with an instant flash of sharp and dull pain radiating throughout your head, pain in your arms and legs from being twisted every which way. You feel your blood pooling around your eyes, nose, and mouth, and you just lay there waiting for help, unable to move yourself or get back up (again, think of a tree).
One of the unfortunate occurrences that is all too common with ALS is falling down. Falls can occur often, and they are hard. When I first started falling, they were minor at first. I fell rolling out of bed one morning in a hotel room and cut open my face on the corner of the bedside table. I was in my office at church and caught my foot on the edge of a chair and BAM! I find myself on the floor. I have fallen down stairs at the hospital and in a parking lot in Vermont. I have cracked porcelain tile with my head! I’ve cracked my head open at least 3 times, landed in a patch of blackberry briars face first, impaled my chest on the corner of an end table, bent my arms and legs in every direction, and countless minor falls. They just happen without much warning, and you do really fall like a tree – unable to put your arms out to break your fall!
One ALS friend said, “It’s not like I don’t have a reason for falling. It’s just not a very good one!”
Amazingly, I haven’t fallen in a few months, but I still stand with assistance every day, so a fall is a real possibility. Fortunately, I always have someone at my side to help me break my fall and ease me onto the ground should it occur.
#ALSAwarenessMonth #TheTallerYouAreTheHarderYouFall #HardHeaded #HopeIsNeverLost
Warning - Graphic photos follow
Stop now if you get queasy.
Here are just a FEW of the tumbles Jonathan has taken. If only I had a picture for every one...
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| I remember Jonathan walking in the front door from work. His scrubs were stained with blood everywhere and there were remnants of blood stains on his face and ears. I couldn't figure out if it was his blood or patient blood. A tip of his balding head downward dispelled all questioning... He took at tumble down a flight of stairs at work. Jonathan ALWAYS took the stairs and with long legs, naturally he clipped away at them two by two. With the unpredictable weakening of his legs what had always been his modus operandi became more of modus catch-a-toe-thanks-to-drop-foot-i and Jonathan's head came to a halt on the cement landing. If left a bit of a mark. |
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| Fortunately when you work at the hospital there are quite a few capable hands to put you back together again. |
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| I was getting Jonathan ready to shower and left him leaning against the bathroom counter. Having 7 kids means he doesn't always receive my undivided attention. The 2 year old managed to get her head and arm stuck in the arm hole of her shirt and was struggling to find daylight. I left Jonathan to assist her in getting unstuck and in less than an instant he was DOWN. Cracking the bathroom tile with his noggin. The worst part was that in the process of falling down he swung the door shut and landed in front of the door. I wasn't in the bathroom with him and his body was blocking the door. Mind you, he has NO use of his arms or legs and can't communicate verbally. Man Jenson, aka- the tree trunk, went down hard with nothing to brace his fall. I kneeled down to peek under the door and all I could see was a pool of blood and him facedown. I had NO IDEA what kind of damage had been done. He couldn't communicate ANYTHING. I knew I needed to get to him but I couldn't get the door open. After evaluating window options etc. I finally told him to brace himself and hoped his neck was okay. I pushed as hard as I could and smeared his filleted head across the floor. I got enough of a gap to wedge my body in. I rolled him over and found aweseomesauce. A bit of backup was going to be needed for this one. I was alone with the little kids so I had to call a friend to help get him off the floor because if he goes down I can't get him up alone. A buddy at the hospital stitched him back together. Rich Huffaker has been this man's angel on many occasions. This one took a few days to clear up. |
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| Just a typical face plant kind of day. |
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| An action shot of Adam and I getting Jonathan up after a fall. Lil' Miss Anna felt the need to help rescue her papa as well. |
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| This is another wife FAIL. On a family road trip across country us Oregonian's found ourselves with a broken ramp hitch for the wheelchair (a whole other really long story) in Vermont. We went to get some repair work done and while outside the RV investigating how to solve the hitch problem with the repairman, Adam and I simultaneously let go of Jonathan, who was standing beside us. IMPORTANT NOTE: You don't let go of a tall man with ALS. You simply don't do things like that. They fall down. Really hard. And bleed. And people call ambulances to make sure they aren't dead. |
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| This was the day Jonathan had his port placed to receive IV infusions for a new drug, Radicava, approved for ALS. He showed up for surgery dressed to impress - complete with facial road rash. |
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| This was another delightful fall while we were in Australia at the International ALS/MND Symposium. While trying to get him to the shower I managed to get off balance and he went down. This was the day we were celebrating his 3 year mark of diagnosis. Nothing like starting out a memorable day with a 6:30am floor drop. I had to wake up his brother to get him off the floor for this one. |
Monday, May 4, 2020
ALS Diagnosis
Jonathan's Facebook Post Today:
Day #4
It has been 3.5 years since my ALS diagnosis. But how did it all begin?
The very first thing I noticed was an ever so slight weakening of my grip with my right hand. I probably wouldn't have even noticed that, but I was water skiing with a church youth group and I was having a slightly harder time hanging onto the rope as I was pulled behind the boat. In fact, my left hand grip almost seemed stronger, which was odd for me because I'm missing two partial fingers on that hand. When I got home, I mentioned it to Amber in passing and then thought nothing more of it.
Within the next month, I started dropping things like my car keys while trying to get them out of my pocket, or a handful of popcorn while trying to get it in my mouth - more ended up on the floor or back in the bowl than what actually made it to my mouth. I went bowling with some men from church and we all got a good laugh as I would try to bowl, and on the downward swing the ball would slip out of my hands and go backwards towards the seats. Let's just say it wasn't my best game!
Things at work became harder to do like open sterile packages, or draw up medication in syringes. Fine motor movements were becoming increasingly more difficult with each passing day. Pretty soon, I couldn't do up the buttons of a dress shirt, which created another problem because I was serving as a bishop at the time, and I would frequently go from work to the church. I either had to be creative in how I took my dress shirt off when changing into scrubs at work, or I had to run home after work to have Amber help me before heading to the church. Eventually, I had to have help all the time.
I was lucky because I was diagnosed within 4 months of those first symptoms. Most people go a year or longer without a diagnosis! ALS is hard to diagnose because of the differences in presentation and progression among individuals. I have never met another individual with ALS whose presentation or progression was identical to mine - and I have met a LOT of people living with ALS. Sometimes it starts in a hand, sometimes it starts in the legs. Sometimes it starts affecting speech and swallowing before anything else. It can start in any order, or all at the same time. It can progress slowly, or incredibly fast. However, one characteristic is the same. It is ALWAYS fatal!
If you've read this far, sorry for the long post. Hopefully you've learned a little something and become more aware of how ALS presents itself.
#ALSAwarenessMonth #ALS #HopeIsNeverLost
Day #4
It has been 3.5 years since my ALS diagnosis. But how did it all begin?
The very first thing I noticed was an ever so slight weakening of my grip with my right hand. I probably wouldn't have even noticed that, but I was water skiing with a church youth group and I was having a slightly harder time hanging onto the rope as I was pulled behind the boat. In fact, my left hand grip almost seemed stronger, which was odd for me because I'm missing two partial fingers on that hand. When I got home, I mentioned it to Amber in passing and then thought nothing more of it.
Within the next month, I started dropping things like my car keys while trying to get them out of my pocket, or a handful of popcorn while trying to get it in my mouth - more ended up on the floor or back in the bowl than what actually made it to my mouth. I went bowling with some men from church and we all got a good laugh as I would try to bowl, and on the downward swing the ball would slip out of my hands and go backwards towards the seats. Let's just say it wasn't my best game!
Things at work became harder to do like open sterile packages, or draw up medication in syringes. Fine motor movements were becoming increasingly more difficult with each passing day. Pretty soon, I couldn't do up the buttons of a dress shirt, which created another problem because I was serving as a bishop at the time, and I would frequently go from work to the church. I either had to be creative in how I took my dress shirt off when changing into scrubs at work, or I had to run home after work to have Amber help me before heading to the church. Eventually, I had to have help all the time.
I was lucky because I was diagnosed within 4 months of those first symptoms. Most people go a year or longer without a diagnosis! ALS is hard to diagnose because of the differences in presentation and progression among individuals. I have never met another individual with ALS whose presentation or progression was identical to mine - and I have met a LOT of people living with ALS. Sometimes it starts in a hand, sometimes it starts in the legs. Sometimes it starts affecting speech and swallowing before anything else. It can start in any order, or all at the same time. It can progress slowly, or incredibly fast. However, one characteristic is the same. It is ALWAYS fatal!
If you've read this far, sorry for the long post. Hopefully you've learned a little something and become more aware of how ALS presents itself.
#ALSAwarenessMonth #ALS #HopeIsNeverLost
These are my memories of the journey to diagnosis -
Sunday, May 3, 2020
Sunday Will Come
Jonathan's Facebook Post for Today:
Day #3:
In teaching of the resurrection of the Savior, Elder Joseph B. Wirthlin of the Quorum of the Twelve Apostles taught:
"Each of us will have our own Fridays—those days when the universe itself seems shattered and the shards of our world lie littered about us in pieces. We all will experience those broken times when it seems we can never be put together again. We will all have our Fridays.
But I testify to you in the name of the One who conquered death—Sunday will come. In the darkness of our sorrow, Sunday will come.
No matter our desperation, no matter our grief, Sunday will come. In this life or the next, Sunday will come.”
Day #3:
In teaching of the resurrection of the Savior, Elder Joseph B. Wirthlin of the Quorum of the Twelve Apostles taught:
"Each of us will have our own Fridays—those days when the universe itself seems shattered and the shards of our world lie littered about us in pieces. We all will experience those broken times when it seems we can never be put together again. We will all have our Fridays.
But I testify to you in the name of the One who conquered death—Sunday will come. In the darkness of our sorrow, Sunday will come.
No matter our desperation, no matter our grief, Sunday will come. In this life or the next, Sunday will come.”
In my battle with ALS, I find great comfort and peace in hearing the voice of the Lord through Scriptures, and through the teachings of modern day Prophets and Apostles. I know that because of Jesus Christ, my Sunday will come!
#ALSAwarenessMonth #HopeIsNeverLost #HearHim
#ALSAwarenessMonth #HopeIsNeverLost #HearHim
Saturday, May 2, 2020
There Is Much Joy to Be Had
Jonathan's Facebook Post Today:
Day #2:
Living with ALS is challenging to say the least. Every day you find your body just a little weaker than the day before. Simple tasks become ever so challenging until you can't do them at all. There is not necessarily pain from ALS per se, but the process can cause pain - pain in joints from not moving them, pain in the lower back from sitting or laying without the ability to adjust yourself, pain from surgical procedures to have a feeding tube or a tracheostomy placed, and there is a degree of mental anguish.
I never imagined I would find myself confined to a wheelchair without the ability to move, talk, eat, and losing the ability to breathe on my own. But, that has become my reality. The mental challenge becomes learning how to cope with the constant changes in a positive way, and keeping the mind active. I am determined to do so! This life is so glorious in so many ways. There are so many things that we take for granted in life that we don’t even realize until they’re gone. I’m learning more than ever to take note of the little things.
If I might give a suggestion: take a moment during this “pause” of life to notice the little things. Be grateful! Say Thanks a little more! Grab your loved ones and pull them close and hold them there for a minute! Say “I Love You!” Look at the sky during a sunrise or a sunset. Look at the moon and the stars! Take time to notice the leaves on a tree, flowers blooming, birds chirping, and the breeze gently blowing during this beautiful time of year. There is much joy to be had, no matter how challenging we find our circumstances!
#ALSAwarenessMonth #ALS #NoWhiteFlags #FindJoyInTheLittleThings #HopeIsNeverLost
Day #2:
Living with ALS is challenging to say the least. Every day you find your body just a little weaker than the day before. Simple tasks become ever so challenging until you can't do them at all. There is not necessarily pain from ALS per se, but the process can cause pain - pain in joints from not moving them, pain in the lower back from sitting or laying without the ability to adjust yourself, pain from surgical procedures to have a feeding tube or a tracheostomy placed, and there is a degree of mental anguish.
I never imagined I would find myself confined to a wheelchair without the ability to move, talk, eat, and losing the ability to breathe on my own. But, that has become my reality. The mental challenge becomes learning how to cope with the constant changes in a positive way, and keeping the mind active. I am determined to do so! This life is so glorious in so many ways. There are so many things that we take for granted in life that we don’t even realize until they’re gone. I’m learning more than ever to take note of the little things.
If I might give a suggestion: take a moment during this “pause” of life to notice the little things. Be grateful! Say Thanks a little more! Grab your loved ones and pull them close and hold them there for a minute! Say “I Love You!” Look at the sky during a sunrise or a sunset. Look at the moon and the stars! Take time to notice the leaves on a tree, flowers blooming, birds chirping, and the breeze gently blowing during this beautiful time of year. There is much joy to be had, no matter how challenging we find our circumstances!
#ALSAwarenessMonth #ALS #NoWhiteFlags #FindJoyInTheLittleThings #HopeIsNeverLost
Friday, May 1, 2020
May - ALS Awareness Month
Jonathan began his quest to spread ALS Awareness today - with the movement of his eyes. I daily stand in awe at this man. Gone are his hands, his legs, his voice, and to some extent his endurance. But not his eyes nor his personality. And so for each day during the month of May he plans to share a snippet of life with ALS.
I am extremely grateful for the love and kindness that has been extended to our family today! As some of you know, May is ALS Awareness Month. Our home has been decorated with hearts and sunflowers, our sidewalks filled with colorful messages of love, we have received cookies, candy, flowers, and dinner. I feel the love and I'm grateful for the love and compassion!
ALS affects approximately 20,000-30,000 people in the U.S., and many more worldwide. With a life expectancy of 2-5 years, ALS is brutally fast in changing lifestyles and making family life extremely challenging. Within a lifetime, there is a good chance that you, a family member, or someone you know will be diagnosed with ALS.
So, as we begin this month, I will try to share more of my experiences of living with ALS. I also want to invite discussion - If you would like to ask me questions in the comments, or message me, I will try to answer them.
More than anything, I just want to express my gratitude for my many blessings! Life is still wonderful! God is ever present in our lives!
#ALSAwarenessMonth #ALS #Grateful #HopeIsNeverLost
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