Life Changing Emergency
Donation protected
Dear Friends,
This is my son Josh, and he needs your help.
Let me start by saying this may be the hardest thing I've ever had to write. I look at that picture and see my only child, a healthy 30 year old entrepreneur and small business owner who produces music in his spare time. He's outgoing and athletic, loves spending time with friends and family, and he adores his dog, Kujo.
It's summer now, and he should be out doing all the things he loves with those he loves to do them with, but he can't. Six weeks ago his life changed in a way we never could have imagined.
Around dinner time on May 20th, he didn't feel quite right. He said he felt run down and thought taking a shower would snap him out of it. When he tried to adjust the water, he realized he couldn't feel the water temperature so he shut it off. He couldn't feel anything on his skin at all. Within minutes he was struggling to walk. He called 911 and sent me a text. The ambulance arrived within minutes but by the time they got there he could no longer hold his phone and was going in and out of consciousness. That was the beginning.
Josh spent 9 days in the hospital and had 9 seizures over the course of the first 6 days he was in. These weren't epileptic seizures. These presented like strokes. I was Face-timing with him when some of them hit. He would feel them coming on and would call me because he was scared and alone. With the Covid pandemic, patients can't have visitors and they have to go through horrible things by themselves. I was talking to my son when they worst seizure hit. He'd been pushing his call button and hoping help would come as the neurological symptoms washed over him. Hospitals are full, medical staffs are busy. We understand that. If I could have been there, I might have been able to run to find someone, but I couldn't be there. He worked hard to get through the seizure. He'd come to realize they tended to last about 20 minutes and if he could endure it, the symptoms would subside. But not this time.
I was watching the clock and talking to him. He was using positive affirmations to stay calm. "Just a little while longer. It's almost over." He reached the 12 minute mark. A nurse entered his room just as he started slurring his words. I was still on the phone. There was a suden burst of activity. A lot of people surrounded him. I heard them telling him to smile. "Come on, Josh. Show us your teeth." "Lift your leg for me, can you do that? Come on, Josh try." I heard someone call out his blood pressure and knew he may be having a stroke. Someone in a white gown and face mask picked up the phone, told me they were bringing him for a CT scan, and they'd call later. Then they were gone.
Turns out it wasn't a stroke. It was a seizure that looked like a stroke. His left side was paralyzed, his words were slurred, his blood pressure was well into the 200's, and they couldn't figure it out.
After 9 days in the hospital and more than 300 tests, he was released. He was weak, walking with a cane, on anti-seizure meds, and had no diagnosis. Ten long days passed before we got an answer - Paraneoplastic Syndrome.
PNS is a rare auto-immune disorder in which the immune system attacks the central nervous system. There are some treatments that have shown promise, but there is no cure. Josh's primary care doctor told him recovery will be slow, but he may eventually get back to 90%. That was before things got worse.
On his doctor's advice, Josh changed his diet. He can no longer have grains of any kind - no wheat, rye, barley, rice, millet, soy, corn, and no dairy. No pizza, no tacos, no Mexican Street Corn, no ice cream sundaes, but if he can put all that stuff behind him the neurological symptoms should eventually subside.
The diet change seemed to help. His energy started to return. He had days he could walk without his cane, and he was looking forward to being able to re-start his business as soon as the Covid restrictions were relaxed. He started easing into exercising to regain some muscle tone in his arms. He'd do short sets of push-ups, 10 here, 10 there, and brief workouts with a 15 lb kettle bell, but his muscles and joints didn't feel right. His left arm was especially uncooperative, and began shaking at the slightest exertion - like dipping a plaintain chip into salsa.
Sunday night, July 5th, he was back in the emergency room. Ordinarily, that would be a bad thing, but this proved to be a blessing. One of the ER doctors actually had experience with this specific disease. He couldn't do anything about the symptoms that landed Josh in the hospital, but knowing the disease, he took steps that none of Josh's other doctors had taken to put a care plan in place.
When my son was released from the ER in the wee hours of Monday morning, they had an ambulance bring him home so that he'd have someone there to help him up the 4 flights of stairs to his apartment. Later that day, the hospital called. They made an appointment for him to have a full work up with one of their neurologists on the 29th (first available appointment), and they contacted his insurance to get coverage for a nurse to visit with him at home and take his vitals, a physical therapist to work with him at home, and a home health aid who will spend a couple of hours with him 3-4 days a week, helping with things like laundry and grocery shopping, and accompanying him when he feels strong enough to go for a walk.
The nurse visited with him for the first time on Wednesday. Based on her observations, they've added an occupational therapist to his team. I saw that as good news. Then he told me he's no longer strong enough to walk with a cane and he needs a walker. That news nearly broke my heart.
Six weeks ago he was a healthy 30 year old man. Now he's struggling to take care of himself and his cousin, Maegan, is caring for his dog because he can't.
I know this is long, but I needed you to understand why he needs your help. This diagnosis is has changed my son's life.
Josh has insurance, and he will have co-pays and deductibles to deal with once the medical bills start coming in. As his mom, those are the least of my worries.
His home is my biggest concern. He has a really cute apartment but it is a fourth floor walk-up and those stairs are now dangerous for my son. If one of his legs gives out, his arms are not strong enough to grab the banister and keep him from falling. We have to relocate him to a first floor apartment. That will require at least a first month's rent and a security deposit. Also, since he's been unable to work due to Covid, he is behind in the rent on his current apartment and will have to catch that up when he moves. We have to find a way to cover those expenses.
Josh wants to work. His small business serves as a sales arm for a one of the largest home security companies in the country. He sells their systems and works with a fulfillment company to have them professionally installed. He wants to work. He wants to pay his way, but he can't meet with customers face-to-face, right now, and unless he finds a way to get referrals he can't do phone sales. He's planning to try to hire sales reps and lead generators so he can restart the business in a post-Covid world and come up with the money to move, meanwhile I, as his mom, am watching his body betray him and simply praying for him to get better.
He needs to be in a first floor apartment so that stairs are not a life-threatening hazard, and he needs to be able to pay his bills for a couple of months while he gets on the road to possible recovery.
He can't move and he can't focus on getting stronger without your help. I know a lot of people need assistance and there is only so much help to go around, but please, if you can, donate something to help my son. Please.
Thank you,
Kathy
This is my son Josh, and he needs your help.
Let me start by saying this may be the hardest thing I've ever had to write. I look at that picture and see my only child, a healthy 30 year old entrepreneur and small business owner who produces music in his spare time. He's outgoing and athletic, loves spending time with friends and family, and he adores his dog, Kujo.
It's summer now, and he should be out doing all the things he loves with those he loves to do them with, but he can't. Six weeks ago his life changed in a way we never could have imagined.
Around dinner time on May 20th, he didn't feel quite right. He said he felt run down and thought taking a shower would snap him out of it. When he tried to adjust the water, he realized he couldn't feel the water temperature so he shut it off. He couldn't feel anything on his skin at all. Within minutes he was struggling to walk. He called 911 and sent me a text. The ambulance arrived within minutes but by the time they got there he could no longer hold his phone and was going in and out of consciousness. That was the beginning.
Josh spent 9 days in the hospital and had 9 seizures over the course of the first 6 days he was in. These weren't epileptic seizures. These presented like strokes. I was Face-timing with him when some of them hit. He would feel them coming on and would call me because he was scared and alone. With the Covid pandemic, patients can't have visitors and they have to go through horrible things by themselves. I was talking to my son when they worst seizure hit. He'd been pushing his call button and hoping help would come as the neurological symptoms washed over him. Hospitals are full, medical staffs are busy. We understand that. If I could have been there, I might have been able to run to find someone, but I couldn't be there. He worked hard to get through the seizure. He'd come to realize they tended to last about 20 minutes and if he could endure it, the symptoms would subside. But not this time.
I was watching the clock and talking to him. He was using positive affirmations to stay calm. "Just a little while longer. It's almost over." He reached the 12 minute mark. A nurse entered his room just as he started slurring his words. I was still on the phone. There was a suden burst of activity. A lot of people surrounded him. I heard them telling him to smile. "Come on, Josh. Show us your teeth." "Lift your leg for me, can you do that? Come on, Josh try." I heard someone call out his blood pressure and knew he may be having a stroke. Someone in a white gown and face mask picked up the phone, told me they were bringing him for a CT scan, and they'd call later. Then they were gone.
Turns out it wasn't a stroke. It was a seizure that looked like a stroke. His left side was paralyzed, his words were slurred, his blood pressure was well into the 200's, and they couldn't figure it out.
After 9 days in the hospital and more than 300 tests, he was released. He was weak, walking with a cane, on anti-seizure meds, and had no diagnosis. Ten long days passed before we got an answer - Paraneoplastic Syndrome.
PNS is a rare auto-immune disorder in which the immune system attacks the central nervous system. There are some treatments that have shown promise, but there is no cure. Josh's primary care doctor told him recovery will be slow, but he may eventually get back to 90%. That was before things got worse.
On his doctor's advice, Josh changed his diet. He can no longer have grains of any kind - no wheat, rye, barley, rice, millet, soy, corn, and no dairy. No pizza, no tacos, no Mexican Street Corn, no ice cream sundaes, but if he can put all that stuff behind him the neurological symptoms should eventually subside.
The diet change seemed to help. His energy started to return. He had days he could walk without his cane, and he was looking forward to being able to re-start his business as soon as the Covid restrictions were relaxed. He started easing into exercising to regain some muscle tone in his arms. He'd do short sets of push-ups, 10 here, 10 there, and brief workouts with a 15 lb kettle bell, but his muscles and joints didn't feel right. His left arm was especially uncooperative, and began shaking at the slightest exertion - like dipping a plaintain chip into salsa.
Sunday night, July 5th, he was back in the emergency room. Ordinarily, that would be a bad thing, but this proved to be a blessing. One of the ER doctors actually had experience with this specific disease. He couldn't do anything about the symptoms that landed Josh in the hospital, but knowing the disease, he took steps that none of Josh's other doctors had taken to put a care plan in place.
When my son was released from the ER in the wee hours of Monday morning, they had an ambulance bring him home so that he'd have someone there to help him up the 4 flights of stairs to his apartment. Later that day, the hospital called. They made an appointment for him to have a full work up with one of their neurologists on the 29th (first available appointment), and they contacted his insurance to get coverage for a nurse to visit with him at home and take his vitals, a physical therapist to work with him at home, and a home health aid who will spend a couple of hours with him 3-4 days a week, helping with things like laundry and grocery shopping, and accompanying him when he feels strong enough to go for a walk.
The nurse visited with him for the first time on Wednesday. Based on her observations, they've added an occupational therapist to his team. I saw that as good news. Then he told me he's no longer strong enough to walk with a cane and he needs a walker. That news nearly broke my heart.
Six weeks ago he was a healthy 30 year old man. Now he's struggling to take care of himself and his cousin, Maegan, is caring for his dog because he can't.
I know this is long, but I needed you to understand why he needs your help. This diagnosis is has changed my son's life.
Josh has insurance, and he will have co-pays and deductibles to deal with once the medical bills start coming in. As his mom, those are the least of my worries.
His home is my biggest concern. He has a really cute apartment but it is a fourth floor walk-up and those stairs are now dangerous for my son. If one of his legs gives out, his arms are not strong enough to grab the banister and keep him from falling. We have to relocate him to a first floor apartment. That will require at least a first month's rent and a security deposit. Also, since he's been unable to work due to Covid, he is behind in the rent on his current apartment and will have to catch that up when he moves. We have to find a way to cover those expenses.
Josh wants to work. His small business serves as a sales arm for a one of the largest home security companies in the country. He sells their systems and works with a fulfillment company to have them professionally installed. He wants to work. He wants to pay his way, but he can't meet with customers face-to-face, right now, and unless he finds a way to get referrals he can't do phone sales. He's planning to try to hire sales reps and lead generators so he can restart the business in a post-Covid world and come up with the money to move, meanwhile I, as his mom, am watching his body betray him and simply praying for him to get better.
He needs to be in a first floor apartment so that stairs are not a life-threatening hazard, and he needs to be able to pay his bills for a couple of months while he gets on the road to possible recovery.
He can't move and he can't focus on getting stronger without your help. I know a lot of people need assistance and there is only so much help to go around, but please, if you can, donate something to help my son. Please.
Thank you,
Kathy
Organizer and beneficiary
Katherine Jackson
Organizer
Brookline, NH
Joshua McCarthy
Beneficiary