Narrowminded
Extremely helpful member
- Joined
- Apr 30, 2016
- Messages
- 2,850
- Reason
- Lost a loved one
- Diagnosis
- 07/2007
- Country
- US
- State
- PA
- City
- Pittsburgh
Hi All,
Just wanted to introduce myself. I was thilled to find this forum. I have been on others, but this is the first I've found directed at the CALS. My Husband, Brian, was dx in July of 07. He actually started with symptoms in the winter of 04-05. He started limping. He wouldn't go get it checked because "He didn't have time for that". We own a very small manufacturing company and his first priority was always the business, over family and everything. Fast forward to the summer of 05. We had our son on campus to set his first semester schedule. He and I noticed that DH's leg was swollen on top of the limp. Finally convinced him to see a Dr about that.
He would put off scheduling follow ups to the inital tests, and even took a year off of searching for a reason. Then finally our neighbor who was a physician convinced him to see his second Neuro. The first just did some MRI's and said he didn't know what was going on. The second got him started with PT and did his second EMG/NCV. After 6 mo, he conviced DH to go to our 3rd Neuro who finally made the DX. Our daughter had just turned 13, and DS was now in his Jr year of college.
At first DH refused to tell anyone and refused to use a cane. However, after a particualarly nasty fall with the cane one evening, he easily moved to the walker then the wheelchair. In Aug of 2010, he was trached and vented. At that point he quit going into the office and DS took over his position there.
For the first 9 months of his vent, I took care of him single handedly. He mostly stayed in bed, but would take rides around the neighborhood in his wheelchair. However, we lived on the high side of the street and getting him down to the street level was a real treat in his chair. We had put in a stair chair years before which he reluctantly used. Then it became impossible for him to use that as he became weaker.
The year DD graduated from HS, we moved to a level entry townhome with a first floor master. Through it all I've continued to work, I've done the books for the business. At first from home, late at night and on the weekends. Then after that first 9 months with the trach I was able to get in some help. Fortunately our health insurance covered it.
Today, DH basically will not get out of bed at all. If he needs to go to the hospital, he has to go by ambulance. He hasn't been to clinic in about 1.5 years. And this past 6 months he lost the ability to talk. He now keeps the cuff up on his trach so we have to read lips and use a letter board. He is dragging his feet on learning to use the Tobii. Hopefully we will have someone here soon, to teach him better.
Other than his ALS, his other health is good. However, all of this has taken it's tole. In the past 4 months or so, sleeping has become precarious at best. It makes it hard to get up and go to work. The help I do have is just during the day so I can go to work. The rest of the time, it's just me. When my DD is home from college, she helps too.
DS got married 2 years ago, so isn't around as much and DD has her life as well. I do my best to try and keep their life normal. It will never be normal like others, but I do my best.
I was reading through a thread on here about final arrangements. I had to do those myself. Actually I did those the spring of 10 before his trach. He refused to go with me. That was one of the hardest things I've ever done, but I did mine at the same time. I wanted to save my kids from having to deal with all of it. They will still have some, but not everything. At that point I was convinced he'd be gone within the year and had he not been vented, he would have.
Sometimes I wonder about the vent. It has allowed him to see his children grow up and has created a very close bond between him and our daughter that wasn't there before because business always came first. However, as the years march on, I am definitely wearing out.
I came searching for a forum where I'd find others who would understand and maybe have some suggestions. DH does not get that the stress is killing me. He's always been kind of selfish, even prior to the disease and it has just made him more so. I understand he cannot do anything for himself as the only thing he can move is his eyes and lips. He can slightly shake his head no. However, he has absolutely no empathy for my lack of sleep or when I'm ill or whatever.
On top of that, work has been extemely slow so, I'm terribly stressed there as well. I'd love to sell the business, but that's a double edged sword. First, I have to get it right side up, then if I do sell, our insurance would change and I wouldn't have any help available and I would then not be able to work. I don't know how we would be able to make it from the little it he gets from Soc. Sec. I'm too young at 54 to retire, so I'd have to buy insurance for myself. With Medicare only covering 80% of things, I don't think we could afford his vent, let alone all the supplies that go with it.
I've just really been struggling as of late. I'm open to any suggestions. Maybe there is something I'm not aware of that is out there. Most things I've looked into, we are just over the threshold money wise. I'm kind of in that rock and hard place position. Couple of $ too much for help, but not nearly close to enough to afford anything on my own.
Thanks for listening and please know I'm here too to listen to others. This disease stinks.
sue
Just wanted to introduce myself. I was thilled to find this forum. I have been on others, but this is the first I've found directed at the CALS. My Husband, Brian, was dx in July of 07. He actually started with symptoms in the winter of 04-05. He started limping. He wouldn't go get it checked because "He didn't have time for that". We own a very small manufacturing company and his first priority was always the business, over family and everything. Fast forward to the summer of 05. We had our son on campus to set his first semester schedule. He and I noticed that DH's leg was swollen on top of the limp. Finally convinced him to see a Dr about that.
He would put off scheduling follow ups to the inital tests, and even took a year off of searching for a reason. Then finally our neighbor who was a physician convinced him to see his second Neuro. The first just did some MRI's and said he didn't know what was going on. The second got him started with PT and did his second EMG/NCV. After 6 mo, he conviced DH to go to our 3rd Neuro who finally made the DX. Our daughter had just turned 13, and DS was now in his Jr year of college.
At first DH refused to tell anyone and refused to use a cane. However, after a particualarly nasty fall with the cane one evening, he easily moved to the walker then the wheelchair. In Aug of 2010, he was trached and vented. At that point he quit going into the office and DS took over his position there.
For the first 9 months of his vent, I took care of him single handedly. He mostly stayed in bed, but would take rides around the neighborhood in his wheelchair. However, we lived on the high side of the street and getting him down to the street level was a real treat in his chair. We had put in a stair chair years before which he reluctantly used. Then it became impossible for him to use that as he became weaker.
The year DD graduated from HS, we moved to a level entry townhome with a first floor master. Through it all I've continued to work, I've done the books for the business. At first from home, late at night and on the weekends. Then after that first 9 months with the trach I was able to get in some help. Fortunately our health insurance covered it.
Today, DH basically will not get out of bed at all. If he needs to go to the hospital, he has to go by ambulance. He hasn't been to clinic in about 1.5 years. And this past 6 months he lost the ability to talk. He now keeps the cuff up on his trach so we have to read lips and use a letter board. He is dragging his feet on learning to use the Tobii. Hopefully we will have someone here soon, to teach him better.
Other than his ALS, his other health is good. However, all of this has taken it's tole. In the past 4 months or so, sleeping has become precarious at best. It makes it hard to get up and go to work. The help I do have is just during the day so I can go to work. The rest of the time, it's just me. When my DD is home from college, she helps too.
DS got married 2 years ago, so isn't around as much and DD has her life as well. I do my best to try and keep their life normal. It will never be normal like others, but I do my best.
I was reading through a thread on here about final arrangements. I had to do those myself. Actually I did those the spring of 10 before his trach. He refused to go with me. That was one of the hardest things I've ever done, but I did mine at the same time. I wanted to save my kids from having to deal with all of it. They will still have some, but not everything. At that point I was convinced he'd be gone within the year and had he not been vented, he would have.
Sometimes I wonder about the vent. It has allowed him to see his children grow up and has created a very close bond between him and our daughter that wasn't there before because business always came first. However, as the years march on, I am definitely wearing out.
I came searching for a forum where I'd find others who would understand and maybe have some suggestions. DH does not get that the stress is killing me. He's always been kind of selfish, even prior to the disease and it has just made him more so. I understand he cannot do anything for himself as the only thing he can move is his eyes and lips. He can slightly shake his head no. However, he has absolutely no empathy for my lack of sleep or when I'm ill or whatever.
On top of that, work has been extemely slow so, I'm terribly stressed there as well. I'd love to sell the business, but that's a double edged sword. First, I have to get it right side up, then if I do sell, our insurance would change and I wouldn't have any help available and I would then not be able to work. I don't know how we would be able to make it from the little it he gets from Soc. Sec. I'm too young at 54 to retire, so I'd have to buy insurance for myself. With Medicare only covering 80% of things, I don't think we could afford his vent, let alone all the supplies that go with it.
I've just really been struggling as of late. I'm open to any suggestions. Maybe there is something I'm not aware of that is out there. Most things I've looked into, we are just over the threshold money wise. I'm kind of in that rock and hard place position. Couple of $ too much for help, but not nearly close to enough to afford anything on my own.
Thanks for listening and please know I'm here too to listen to others. This disease stinks.
sue
