“I was doing it all: Mom, wife, caregiver, employee. I was running on empty.”
“It was a good four to six months of testing. Our second was just born when Harley’s left leg started to delay, which was almost a year to-date after two traumatic accidents the same week. One was mountain biking, where he hit an overhanging branch and was flown off his bike. Later that week, he was hit by a car on his road bike, by someone who didn’t know the rules of the road and crossed the double yellow lines to pass him.”
After a couple months of testing, he kinda had a good idea it was ALS, but we didn't want to believe it. ALS is basically a process of elimination. Everything would come back negative, negative, negative. By the end of 2017, we pretty much knew. Harley was very active and a ‘Go Big or Go Home’ kind of guy. He was always in the woods. He had a love for mountain biking and competing in races, a love for playing his guitar, four wheeling, snowboarding, renovating our home, and his two little girls. (Sobbing) This was crushing. ALS, the worst of the worst – you don’t know it will ruin your world…until it does.
As the ALS tests continued, Harley started to look into clinical trials. So when he was formally diagnosed in March of 2018, he was prepared for it. He was like, ‘If I have this, what else are we gonna do?’ There’s no cure for ALS, so the clinical trial was kind of like a ray of hope.
He was in a Phase 3 stem cell trial from 2018 to the beginning of 2019. It’s 2023 and I still don't know if he got the real stuff or placebo. He didn’t progress while he was in the trial. He may have been a little slower, but he was functioning. So I thought maybe he got the true medicine. But then again, maybe he didn’t progress because he was so freshly diagnosed? I don’t know. And even when he was doing well, it wasn’t sublime. Because it was just a trial…it’s not like we could sign up for the treatment and get it all the time.
There was another trial he thought about - the treatment was two pills - and after that trial, you were still able to get the pills. But the stem cell trial wasn’t that way. It angers me because at the end of the trial, they said that as a thank you, the 200 participants would continue getting the treatment. We were excited. But then the FDA wouldn’t help. They wouldn’t fund it for all 200 participants. They said that only two participants from each of the six sites could continue the treatment. 12 participants, really? Everyone was interviewed, and the two participants whose ALS had progressed the least would get it. And they’re still getting it today. They’re stable. So that hurts. There is a stem cell treatment approved in South Korea. But for some reason, the FDA is just sitting on it here in the U.S.
It got pretty bad a couple months after the trial ended in 2019. He was using hiking sticks to help him walk, and then eventually couldn’t walk at all. He couldn’t drive. He couldn’t grip anything. He couldn’t feed himself. He couldn’t rub his eyes, itch his head. Your everyday, don’t-even-think-about things, he couldn’t do.
In August 2019, he got his wheelchair and started to lose his speech. I’ve known him since I was 10 years old. We grew up together and have tackled it all, but this…this was so hard to watch him deteriorate before my eyes. He was such a strong, active person and to see him lose it all, ugh, he lost it all and I witnessed it. He tried so hard to fight this. I had ALS too, the whole family did. We have been through a lot of trying times, but things would get better. But this, there was no getting better, every day he got a little worse. No recovering.
My work was pretty supportive which was helpful. I was able to get extra PTO days as a caregiver. If I had to leave work, I was only 25 minutes from home. Then the pandemic hit. So in a weird, ironic way, it was a blessing in disguise. Harley was getting worse and could not be left alone anymore. As much as it was so hard and life wasn’t pretty, I am so thankful I was able to be home with him.
I was stressed out of belief. I definitely didn’t keep it together. But I kept going, on survivor mode. (Shrug) What else was I gonna do? Harley needed me. We had two little girls who needed their mom. I still had to work. One of my girls was doing Kindergarten on Zoom. And the other…she was so little. She could feel the tension and me not being able to give her attention. We had an amazing babysitter, but at the beginning of the pandemic no one knew what was going on, so we didn’t have the girls go with her. I was doing it all: Mom, wife, caregiver, employee.
His mind was still there. He was still Harley on the inside. We were fortunate to have an eye gaze device that he could communicate through. I don’t even think they had those five years ago. I can’t imagine not being able to communicate with him. He would type with his eyes and then press speak and the computer would speak for him. And he could send emails to me if I wasn’t home, his way of calling me.
Relationship wise, it got bad towards the end. We would argue. I’d say I’m doing it all, I’m doing the best I can. And he’d say it’s not good enough. We need help. But we couldn’t get it. He needed a nurse, but wasn’t approved for one, which is just crazy. Eventually we were able to get an aide a couple days a week, but to be honest, you can kind of get anyone off the street to be an aide. And with the pandemic, it was even harder to get help. Nobody wanted to work. I was lucky I was home, because the aide really didn’t feel comfortable doing things for him. She became more like my maid…vacuuming, laundry. She lasted four months. Then we got an LPN [licensed practical nurse] after lots of back and forth with insurance and paperwork and advocating. But I was still doing everything. The LPN had a prosthetic leg. He wasn’t stable on his feet. I was so afraid he was going to fall. I thought, how are you going to pick Harley up? The LPN lasted three days. We were able to get a Chiropractor who was nice enough to come to the house on his own free time, paid out of pocket because insurance wouldn’t pay for it, but thought at least Harley could get stretched and moved around.
When he got his feeding tube, nurses came a couple times a week to check on him. That was to last a month or two to check the feeding tube. We begged them to keep coming back, to keep Harley approved for visits, re-evaluate him and then come for a bit longer. But their job was to just check for no infections and check his vitals, there for 30 minutes twice a week. At least his vitals would be checked for peace of mind. One of the RNs took a liking to him and our family. She tried hard to get us help. Eventually she said, ‘You know, I’m doing other things, but I’m going to come and help you.’ He was really needing round-the-clock care. We got her a few times a week, half-days, for the last three months of his life.
Then, Hospice came. Funny how now we had quite the team and medicine was able to be delivered to your door, no need to go to the pharmacy again. Help was flowing in and out of our house, always an appointment. OT, PT, A Chaplain that did Reiki, 24-hour on-call support, Health Aide, Pain Management Registered Nurse, Counseling.
Harley wasn’t really about Church at the time…he never really understood it. But he started to dig deep after being diagnosed and eventually found the Assembly of God Church with an amazing Pastor and Church Family. He read the entire Bible. He got Baptized. It really gave him peace. And our whole network of family and friends were amazing too. It was just the simple things. People checked in, took care of dinners for us. Gave us money to help with medical stuff that insurance wouldn’t cover, and our neighbors would come any time of day I called for help. There was never a moment where we didn’t feel the love.
If you’re considering a clinical trial, make sure you read the fine print. Make sure you understand everything. And if it feels right for you, I would totally do it. There could definitely be a positive to trials and you’re helping to find a treatment or cure in the future.
“It was a good four to six months of testing. Our second was just born when Harley’s left leg started to delay, which was almost a year to-date after two traumatic accidents the same week. One was mountain biking, where he hit an overhanging branch and was flown off his bike. Later that week, he was hit by a car on his road bike, by someone who didn’t know the rules of the road and crossed the double yellow lines to pass him.”
After a couple months of testing, he kinda had a good idea it was ALS, but we didn't want to believe it. ALS is basically a process of elimination. Everything would come back negative, negative, negative. By the end of 2017, we pretty much knew. Harley was very active and a ‘Go Big or Go Home’ kind of guy. He was always in the woods. He had a love for mountain biking and competing in races, a love for playing his guitar, four wheeling, snowboarding, renovating our home, and his two little girls. (Sobbing) This was crushing. ALS, the worst of the worst – you don’t know it will ruin your world…until it does.
As the ALS tests continued, Harley started to look into clinical trials. So when he was formally diagnosed in March of 2018, he was prepared for it. He was like, ‘If I have this, what else are we gonna do?’ There’s no cure for ALS, so the clinical trial was kind of like a ray of hope.
He was in a Phase 3 stem cell trial from 2018 to the beginning of 2019. It’s 2023 and I still don't know if he got the real stuff or placebo. He didn’t progress while he was in the trial. He may have been a little slower, but he was functioning. So I thought maybe he got the true medicine. But then again, maybe he didn’t progress because he was so freshly diagnosed? I don’t know. And even when he was doing well, it wasn’t sublime. Because it was just a trial…it’s not like we could sign up for the treatment and get it all the time.
There was another trial he thought about - the treatment was two pills - and after that trial, you were still able to get the pills. But the stem cell trial wasn’t that way. It angers me because at the end of the trial, they said that as a thank you, the 200 participants would continue getting the treatment. We were excited. But then the FDA wouldn’t help. They wouldn’t fund it for all 200 participants. They said that only two participants from each of the six sites could continue the treatment. 12 participants, really? Everyone was interviewed, and the two participants whose ALS had progressed the least would get it. And they’re still getting it today. They’re stable. So that hurts. There is a stem cell treatment approved in South Korea. But for some reason, the FDA is just sitting on it here in the U.S.
It got pretty bad a couple months after the trial ended in 2019. He was using hiking sticks to help him walk, and then eventually couldn’t walk at all. He couldn’t drive. He couldn’t grip anything. He couldn’t feed himself. He couldn’t rub his eyes, itch his head. Your everyday, don’t-even-think-about things, he couldn’t do.
In August 2019, he got his wheelchair and started to lose his speech. I’ve known him since I was 10 years old. We grew up together and have tackled it all, but this…this was so hard to watch him deteriorate before my eyes. He was such a strong, active person and to see him lose it all, ugh, he lost it all and I witnessed it. He tried so hard to fight this. I had ALS too, the whole family did. We have been through a lot of trying times, but things would get better. But this, there was no getting better, every day he got a little worse. No recovering.
My work was pretty supportive which was helpful. I was able to get extra PTO days as a caregiver. If I had to leave work, I was only 25 minutes from home. Then the pandemic hit. So in a weird, ironic way, it was a blessing in disguise. Harley was getting worse and could not be left alone anymore. As much as it was so hard and life wasn’t pretty, I am so thankful I was able to be home with him.
I was stressed out of belief. I definitely didn’t keep it together. But I kept going, on survivor mode. (Shrug) What else was I gonna do? Harley needed me. We had two little girls who needed their mom. I still had to work. One of my girls was doing Kindergarten on Zoom. And the other…she was so little. She could feel the tension and me not being able to give her attention. We had an amazing babysitter, but at the beginning of the pandemic no one knew what was going on, so we didn’t have the girls go with her. I was doing it all: Mom, wife, caregiver, employee.
His mind was still there. He was still Harley on the inside. We were fortunate to have an eye gaze device that he could communicate through. I don’t even think they had those five years ago. I can’t imagine not being able to communicate with him. He would type with his eyes and then press speak and the computer would speak for him. And he could send emails to me if I wasn’t home, his way of calling me.
Relationship wise, it got bad towards the end. We would argue. I’d say I’m doing it all, I’m doing the best I can. And he’d say it’s not good enough. We need help. But we couldn’t get it. He needed a nurse, but wasn’t approved for one, which is just crazy. Eventually we were able to get an aide a couple days a week, but to be honest, you can kind of get anyone off the street to be an aide. And with the pandemic, it was even harder to get help. Nobody wanted to work. I was lucky I was home, because the aide really didn’t feel comfortable doing things for him. She became more like my maid…vacuuming, laundry. She lasted four months. Then we got an LPN [licensed practical nurse] after lots of back and forth with insurance and paperwork and advocating. But I was still doing everything. The LPN had a prosthetic leg. He wasn’t stable on his feet. I was so afraid he was going to fall. I thought, how are you going to pick Harley up? The LPN lasted three days. We were able to get a Chiropractor who was nice enough to come to the house on his own free time, paid out of pocket because insurance wouldn’t pay for it, but thought at least Harley could get stretched and moved around.
When he got his feeding tube, nurses came a couple times a week to check on him. That was to last a month or two to check the feeding tube. We begged them to keep coming back, to keep Harley approved for visits, re-evaluate him and then come for a bit longer. But their job was to just check for no infections and check his vitals, there for 30 minutes twice a week. At least his vitals would be checked for peace of mind. One of the RNs took a liking to him and our family. She tried hard to get us help. Eventually she said, ‘You know, I’m doing other things, but I’m going to come and help you.’ He was really needing round-the-clock care. We got her a few times a week, half-days, for the last three months of his life.
Then, Hospice came. Funny how now we had quite the team and medicine was able to be delivered to your door, no need to go to the pharmacy again. Help was flowing in and out of our house, always an appointment. OT, PT, A Chaplain that did Reiki, 24-hour on-call support, Health Aide, Pain Management Registered Nurse, Counseling.
Harley wasn’t really about Church at the time…he never really understood it. But he started to dig deep after being diagnosed and eventually found the Assembly of God Church with an amazing Pastor and Church Family. He read the entire Bible. He got Baptized. It really gave him peace. And our whole network of family and friends were amazing too. It was just the simple things. People checked in, took care of dinners for us. Gave us money to help with medical stuff that insurance wouldn’t cover, and our neighbors would come any time of day I called for help. There was never a moment where we didn’t feel the love.
If you’re considering a clinical trial, make sure you read the fine print. Make sure you understand everything. And if it feels right for you, I would totally do it. There could definitely be a positive to trials and you’re helping to find a treatment or cure in the future.
“It was a good four to six months of testing. Our second was just born when Harley’s left leg started to delay, which was almost a year to-date after two traumatic accidents the same week. One was mountain biking, where he hit an overhanging branch and was flown off his bike. Later that week, he was hit by a car on his road bike, by someone who didn’t know the rules of the road and crossed the double yellow lines to pass him.”
After a couple months of testing, he kinda had a good idea it was ALS, but we didn't want to believe it. ALS is basically a process of elimination. Everything would come back negative, negative, negative. By the end of 2017, we pretty much knew. Harley was very active and a ‘Go Big or Go Home’ kind of guy. He was always in the woods. He had a love for mountain biking and competing in races, a love for playing his guitar, four wheeling, snowboarding, renovating our home, and his two little girls. (Sobbing) This was crushing. ALS, the worst of the worst – you don’t know it will ruin your world…until it does.
As the ALS tests continued, Harley started to look into clinical trials. So when he was formally diagnosed in March of 2018, he was prepared for it. He was like, ‘If I have this, what else are we gonna do?’ There’s no cure for ALS, so the clinical trial was kind of like a ray of hope.
He was in a Phase 3 stem cell trial from 2018 to the beginning of 2019. It’s 2023 and I still don't know if he got the real stuff or placebo. He didn’t progress while he was in the trial. He may have been a little slower, but he was functioning. So I thought maybe he got the true medicine. But then again, maybe he didn’t progress because he was so freshly diagnosed? I don’t know. And even when he was doing well, it wasn’t sublime. Because it was just a trial…it’s not like we could sign up for the treatment and get it all the time.
There was another trial he thought about - the treatment was two pills - and after that trial, you were still able to get the pills. But the stem cell trial wasn’t that way. It angers me because at the end of the trial, they said that as a thank you, the 200 participants would continue getting the treatment. We were excited. But then the FDA wouldn’t help. They wouldn’t fund it for all 200 participants. They said that only two participants from each of the six sites could continue the treatment. 12 participants, really? Everyone was interviewed, and the two participants whose ALS had progressed the least would get it. And they’re still getting it today. They’re stable. So that hurts. There is a stem cell treatment approved in South Korea. But for some reason, the FDA is just sitting on it here in the U.S.
It got pretty bad a couple months after the trial ended in 2019. He was using hiking sticks to help him walk, and then eventually couldn’t walk at all. He couldn’t drive. He couldn’t grip anything. He couldn’t feed himself. He couldn’t rub his eyes, itch his head. Your everyday, don’t-even-think-about things, he couldn’t do.
In August 2019, he got his wheelchair and started to lose his speech. I’ve known him since I was 10 years old. We grew up together and have tackled it all, but this…this was so hard to watch him deteriorate before my eyes. He was such a strong, active person and to see him lose it all, ugh, he lost it all and I witnessed it. He tried so hard to fight this. I had ALS too, the whole family did. We have been through a lot of trying times, but things would get better. But this, there was no getting better, every day he got a little worse. No recovering.
My work was pretty supportive which was helpful. I was able to get extra PTO days as a caregiver. If I had to leave work, I was only 25 minutes from home. Then the pandemic hit. So in a weird, ironic way, it was a blessing in disguise. Harley was getting worse and could not be left alone anymore. As much as it was so hard and life wasn’t pretty, I am so thankful I was able to be home with him.
I was stressed out of belief. I definitely didn’t keep it together. But I kept going, on survivor mode. (Shrug) What else was I gonna do? Harley needed me. We had two little girls who needed their mom. I still had to work. One of my girls was doing Kindergarten on Zoom. And the other…she was so little. She could feel the tension and me not being able to give her attention. We had an amazing babysitter, but at the beginning of the pandemic no one knew what was going on, so we didn’t have the girls go with her. I was doing it all: Mom, wife, caregiver, employee.
His mind was still there. He was still Harley on the inside. We were fortunate to have an eye gaze device that he could communicate through. I don’t even think they had those five years ago. I can’t imagine not being able to communicate with him. He would type with his eyes and then press speak and the computer would speak for him. And he could send emails to me if I wasn’t home, his way of calling me.
Relationship wise, it got bad towards the end. We would argue. I’d say I’m doing it all, I’m doing the best I can. And he’d say it’s not good enough. We need help. But we couldn’t get it. He needed a nurse, but wasn’t approved for one, which is just crazy. Eventually we were able to get an aide a couple days a week, but to be honest, you can kind of get anyone off the street to be an aide. And with the pandemic, it was even harder to get help. Nobody wanted to work. I was lucky I was home, because the aide really didn’t feel comfortable doing things for him. She became more like my maid…vacuuming, laundry. She lasted four months. Then we got an LPN [licensed practical nurse] after lots of back and forth with insurance and paperwork and advocating. But I was still doing everything. The LPN had a prosthetic leg. He wasn’t stable on his feet. I was so afraid he was going to fall. I thought, how are you going to pick Harley up? The LPN lasted three days. We were able to get a Chiropractor who was nice enough to come to the house on his own free time, paid out of pocket because insurance wouldn’t pay for it, but thought at least Harley could get stretched and moved around.
When he got his feeding tube, nurses came a couple times a week to check on him. That was to last a month or two to check the feeding tube. We begged them to keep coming back, to keep Harley approved for visits, re-evaluate him and then come for a bit longer. But their job was to just check for no infections and check his vitals, there for 30 minutes twice a week. At least his vitals would be checked for peace of mind. One of the RNs took a liking to him and our family. She tried hard to get us help. Eventually she said, ‘You know, I’m doing other things, but I’m going to come and help you.’ He was really needing round-the-clock care. We got her a few times a week, half-days, for the last three months of his life.
Then, Hospice came. Funny how now we had quite the team and medicine was able to be delivered to your door, no need to go to the pharmacy again. Help was flowing in and out of our house, always an appointment. OT, PT, A Chaplain that did Reiki, 24-hour on-call support, Health Aide, Pain Management Registered Nurse, Counseling.
Harley wasn’t really about Church at the time…he never really understood it. But he started to dig deep after being diagnosed and eventually found the Assembly of God Church with an amazing Pastor and Church Family. He read the entire Bible. He got Baptized. It really gave him peace. And our whole network of family and friends were amazing too. It was just the simple things. People checked in, took care of dinners for us. Gave us money to help with medical stuff that insurance wouldn’t cover, and our neighbors would come any time of day I called for help. There was never a moment where we didn’t feel the love.
If you’re considering a clinical trial, make sure you read the fine print. Make sure you understand everything. And if it feels right for you, I would totally do it. There could definitely be a positive to trials and you’re helping to find a treatment or cure in the future.
“It was a good four to six months of testing. Our second was just born when Harley’s left leg started to delay, which was almost a year to-date after two traumatic accidents the same week. One was mountain biking, where he hit an overhanging branch and was flown off his bike. Later that week, he was hit by a car on his road bike, by someone who didn’t know the rules of the road and crossed the double yellow lines to pass him.”
After a couple months of testing, he kinda had a good idea it was ALS, but we didn't want to believe it. ALS is basically a process of elimination. Everything would come back negative, negative, negative. By the end of 2017, we pretty much knew. Harley was very active and a ‘Go Big or Go Home’ kind of guy. He was always in the woods. He had a love for mountain biking and competing in races, a love for playing his guitar, four wheeling, snowboarding, renovating our home, and his two little girls. (Sobbing) This was crushing. ALS, the worst of the worst – you don’t know it will ruin your world…until it does.
As the ALS tests continued, Harley started to look into clinical trials. So when he was formally diagnosed in March of 2018, he was prepared for it. He was like, ‘If I have this, what else are we gonna do?’ There’s no cure for ALS, so the clinical trial was kind of like a ray of hope.
He was in a Phase 3 stem cell trial from 2018 to the beginning of 2019. It’s 2023 and I still don't know if he got the real stuff or placebo. He didn’t progress while he was in the trial. He may have been a little slower, but he was functioning. So I thought maybe he got the true medicine. But then again, maybe he didn’t progress because he was so freshly diagnosed? I don’t know. And even when he was doing well, it wasn’t sublime. Because it was just a trial…it’s not like we could sign up for the treatment and get it all the time.
There was another trial he thought about - the treatment was two pills - and after that trial, you were still able to get the pills. But the stem cell trial wasn’t that way. It angers me because at the end of the trial, they said that as a thank you, the 200 participants would continue getting the treatment. We were excited. But then the FDA wouldn’t help. They wouldn’t fund it for all 200 participants. They said that only two participants from each of the six sites could continue the treatment. 12 participants, really? Everyone was interviewed, and the two participants whose ALS had progressed the least would get it. And they’re still getting it today. They’re stable. So that hurts. There is a stem cell treatment approved in South Korea. But for some reason, the FDA is just sitting on it here in the U.S.
It got pretty bad a couple months after the trial ended in 2019. He was using hiking sticks to help him walk, and then eventually couldn’t walk at all. He couldn’t drive. He couldn’t grip anything. He couldn’t feed himself. He couldn’t rub his eyes, itch his head. Your everyday, don’t-even-think-about things, he couldn’t do.
In August 2019, he got his wheelchair and started to lose his speech. I’ve known him since I was 10 years old. We grew up together and have tackled it all, but this…this was so hard to watch him deteriorate before my eyes. He was such a strong, active person and to see him lose it all, ugh, he lost it all and I witnessed it. He tried so hard to fight this. I had ALS too, the whole family did. We have been through a lot of trying times, but things would get better. But this, there was no getting better, every day he got a little worse. No recovering.
My work was pretty supportive which was helpful. I was able to get extra PTO days as a caregiver. If I had to leave work, I was only 25 minutes from home. Then the pandemic hit. So in a weird, ironic way, it was a blessing in disguise. Harley was getting worse and could not be left alone anymore. As much as it was so hard and life wasn’t pretty, I am so thankful I was able to be home with him.
I was stressed out of belief. I definitely didn’t keep it together. But I kept going, on survivor mode. (Shrug) What else was I gonna do? Harley needed me. We had two little girls who needed their mom. I still had to work. One of my girls was doing Kindergarten on Zoom. And the other…she was so little. She could feel the tension and me not being able to give her attention. We had an amazing babysitter, but at the beginning of the pandemic no one knew what was going on, so we didn’t have the girls go with her. I was doing it all: Mom, wife, caregiver, employee.
His mind was still there. He was still Harley on the inside. We were fortunate to have an eye gaze device that he could communicate through. I don’t even think they had those five years ago. I can’t imagine not being able to communicate with him. He would type with his eyes and then press speak and the computer would speak for him. And he could send emails to me if I wasn’t home, his way of calling me.
Relationship wise, it got bad towards the end. We would argue. I’d say I’m doing it all, I’m doing the best I can. And he’d say it’s not good enough. We need help. But we couldn’t get it. He needed a nurse, but wasn’t approved for one, which is just crazy. Eventually we were able to get an aide a couple days a week, but to be honest, you can kind of get anyone off the street to be an aide. And with the pandemic, it was even harder to get help. Nobody wanted to work. I was lucky I was home, because the aide really didn’t feel comfortable doing things for him. She became more like my maid…vacuuming, laundry. She lasted four months. Then we got an LPN [licensed practical nurse] after lots of back and forth with insurance and paperwork and advocating. But I was still doing everything. The LPN had a prosthetic leg. He wasn’t stable on his feet. I was so afraid he was going to fall. I thought, how are you going to pick Harley up? The LPN lasted three days. We were able to get a Chiropractor who was nice enough to come to the house on his own free time, paid out of pocket because insurance wouldn’t pay for it, but thought at least Harley could get stretched and moved around.
When he got his feeding tube, nurses came a couple times a week to check on him. That was to last a month or two to check the feeding tube. We begged them to keep coming back, to keep Harley approved for visits, re-evaluate him and then come for a bit longer. But their job was to just check for no infections and check his vitals, there for 30 minutes twice a week. At least his vitals would be checked for peace of mind. One of the RNs took a liking to him and our family. She tried hard to get us help. Eventually she said, ‘You know, I’m doing other things, but I’m going to come and help you.’ He was really needing round-the-clock care. We got her a few times a week, half-days, for the last three months of his life.
Then, Hospice came. Funny how now we had quite the team and medicine was able to be delivered to your door, no need to go to the pharmacy again. Help was flowing in and out of our house, always an appointment. OT, PT, A Chaplain that did Reiki, 24-hour on-call support, Health Aide, Pain Management Registered Nurse, Counseling.
Harley wasn’t really about Church at the time…he never really understood it. But he started to dig deep after being diagnosed and eventually found the Assembly of God Church with an amazing Pastor and Church Family. He read the entire Bible. He got Baptized. It really gave him peace. And our whole network of family and friends were amazing too. It was just the simple things. People checked in, took care of dinners for us. Gave us money to help with medical stuff that insurance wouldn’t cover, and our neighbors would come any time of day I called for help. There was never a moment where we didn’t feel the love.
If you’re considering a clinical trial, make sure you read the fine print. Make sure you understand everything. And if it feels right for you, I would totally do it. There could definitely be a positive to trials and you’re helping to find a treatment or cure in the future.
“Take care of yourself. I didn't. Maybe I could have, if I had more help from a nurse. I was running on empty. I was constantly doing research because nobody tells you how to navigate this. I was getting an hour or two of sleep. Not eating until 11 at night. Try to get the sleep and the food in you. Take any help, even if you get it for a half hour, just to mentally and physically rest.”
Representation Matters
Increasing diversity in clinical trials builds trust, promotes health equity, and leads to more effective treatments and better outcomes (NEJM). But there is much work to be done - and barriers to break - to improve awareness and access for all people.
Do you know someone who is a member of a marginalized community who has participated in a clinical trial? If so, we’d love to meet them and share their story. We hope to represent the many faces of clinical trials through this project, and inspire others by shining a light on their experience.
They can contact us here.
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