Barbie
Extremely helpful member
- Joined
- Dec 29, 2007
- Messages
- 2,681
- Reason
- Lost a loved one
- Diagnosis
- 01/2007
- Country
- US
- State
- FL
- City
- orlando
Hi All,
I have been a member of this forum for several years and rarely post because...i don't even know why...but I do read and take so much good away from other posts. I feel like I know people who post alot, just from reading the forums and it makes me sad to see so many of the ones who were here when my husband was first diagnosed passed. So now I have this urge to post my story maybe before it is too late.
My husband was diagnosed in January of 2007. He had been having symptoms for a couple of years but had hidden them from me because he didn't understand them. I had noticed his speech was slurred in the fall of 2006, and saw fasiculations in his arms and noticed that his shoulders were stiff and his walk was stiff. in December, 2006 I mentioned it to him and told him make an appointment with the doctor for a checkup after christmas--and I guess i scared the crap out of him because he collapsed in what I thought was a stroke! It was a weird start to this disease, but within a month he had a diagnosis. The Neuro we saw had bad bedside manner to say the least. He examined my husband for about 15 minutes, then said you have ALS and maybe 3 bad years to live. go get your afffairs in order. no referral to an ALS clinic, no suggestions on therapy, nothing. When I asked him for the name of a support group, he told me to look on line. We could not accept it, and did not tell anyone. we told everyone he had Lyme disease because that is what we wanted it to be and never went back to him. He progressed (degressed really) fairly quickly I think at that point. He stopped working within a month because of emotional issues, was falling constantly and completely withdrew from friends and family. We tried the aggressive lyme treatments for a year, (won't even go into what a crock that is) while he continued to decline from walking to a scooter, barely able to move his arms and lost 50 lbs. At our one year anniversay, I convinced him that we go to the Mayo Clinic in Jax, and they confirmed the diagnosis and were so much more helpful. Telling the kids (4 of them) was tough and something I had to do by myself because of his emotional Liabilty.
So here we are, 4 1/2 years later. He is in a power wheel chair now since year 2. no movement at all in the arms, minimal use of his legs for transfers only, difficult speech. I puree all his food but he still eats and doesnt want a jpeg. We go to the Tampa ALS clinic now, since Mayo is quite far from Orlando.
His emotions are under control now with drugs-- which is the biggest thing. I am his only caregiver because he doesnt like anyone else to touch him, and we don't have any family that cares anyway. I get him in and out of bed, feed him, bathe him, toliet him, wipe his face get him drinks, itch his nose etc etc you guys know the drill. I also am responsible for the 3 kids that still live at home, taking care of everything in our house, and running our family owned business--24/7/365.
I am exhausted to say the least and so very sad.
We had a great and strong marriage and he was my best friend. now I feel like an employee and not a wife. I can't talk to him about that because he can't really accept it. Thanks to ALS and the recession, I can't afford an outside caregiver to help--we are on the verge of losing our house and our business.
We don't go tothe ALS clinic very often--becasue his progression has really slowed down and it is as if he has plateaued for the last year. he hates to go anyway--all they do is mark the progression. we have all the other equipemnt that we need and all the drugs that we need at this time. they recommended a bi-papand a cough assist but he hated it and sent it back--his breathing is fairly good still. I dont feel like I get that much from the ALS association either. he won't go to the support group, and I went but didn't feel like I got anything out of it as it was all patients, not caregivers. the care corrdinator is very nice, but doesn't call or come by to see us. I called once begging for respite care but was told I would have to coordinate it and then they would pay me back. I don't have the time or energy to find someone--I was hoping they would do that for me but...and even if I did find someone for a weekend, what would I do and who would I do it with? that takes too much energy up too. I contacted Hospice and they came out to the house, but again my husband told them he was fine and not ready. They said there was nothing they could do if he didnt want their services.
I don't think that there is anything I can do to make this easier--I am living the live that I was handed even if it is not the life I want. I just get up every day and do what I have to do to keep everyone going.
ALS sucks. plain and simple.
I have been a member of this forum for several years and rarely post because...i don't even know why...but I do read and take so much good away from other posts. I feel like I know people who post alot, just from reading the forums and it makes me sad to see so many of the ones who were here when my husband was first diagnosed passed. So now I have this urge to post my story maybe before it is too late.
My husband was diagnosed in January of 2007. He had been having symptoms for a couple of years but had hidden them from me because he didn't understand them. I had noticed his speech was slurred in the fall of 2006, and saw fasiculations in his arms and noticed that his shoulders were stiff and his walk was stiff. in December, 2006 I mentioned it to him and told him make an appointment with the doctor for a checkup after christmas--and I guess i scared the crap out of him because he collapsed in what I thought was a stroke! It was a weird start to this disease, but within a month he had a diagnosis. The Neuro we saw had bad bedside manner to say the least. He examined my husband for about 15 minutes, then said you have ALS and maybe 3 bad years to live. go get your afffairs in order. no referral to an ALS clinic, no suggestions on therapy, nothing. When I asked him for the name of a support group, he told me to look on line. We could not accept it, and did not tell anyone. we told everyone he had Lyme disease because that is what we wanted it to be and never went back to him. He progressed (degressed really) fairly quickly I think at that point. He stopped working within a month because of emotional issues, was falling constantly and completely withdrew from friends and family. We tried the aggressive lyme treatments for a year, (won't even go into what a crock that is) while he continued to decline from walking to a scooter, barely able to move his arms and lost 50 lbs. At our one year anniversay, I convinced him that we go to the Mayo Clinic in Jax, and they confirmed the diagnosis and were so much more helpful. Telling the kids (4 of them) was tough and something I had to do by myself because of his emotional Liabilty.
So here we are, 4 1/2 years later. He is in a power wheel chair now since year 2. no movement at all in the arms, minimal use of his legs for transfers only, difficult speech. I puree all his food but he still eats and doesnt want a jpeg. We go to the Tampa ALS clinic now, since Mayo is quite far from Orlando.
His emotions are under control now with drugs-- which is the biggest thing. I am his only caregiver because he doesnt like anyone else to touch him, and we don't have any family that cares anyway. I get him in and out of bed, feed him, bathe him, toliet him, wipe his face get him drinks, itch his nose etc etc you guys know the drill. I also am responsible for the 3 kids that still live at home, taking care of everything in our house, and running our family owned business--24/7/365.
I am exhausted to say the least and so very sad.
We had a great and strong marriage and he was my best friend. now I feel like an employee and not a wife. I can't talk to him about that because he can't really accept it. Thanks to ALS and the recession, I can't afford an outside caregiver to help--we are on the verge of losing our house and our business.
We don't go tothe ALS clinic very often--becasue his progression has really slowed down and it is as if he has plateaued for the last year. he hates to go anyway--all they do is mark the progression. we have all the other equipemnt that we need and all the drugs that we need at this time. they recommended a bi-papand a cough assist but he hated it and sent it back--his breathing is fairly good still. I dont feel like I get that much from the ALS association either. he won't go to the support group, and I went but didn't feel like I got anything out of it as it was all patients, not caregivers. the care corrdinator is very nice, but doesn't call or come by to see us. I called once begging for respite care but was told I would have to coordinate it and then they would pay me back. I don't have the time or energy to find someone--I was hoping they would do that for me but...and even if I did find someone for a weekend, what would I do and who would I do it with? that takes too much energy up too. I contacted Hospice and they came out to the house, but again my husband told them he was fine and not ready. They said there was nothing they could do if he didnt want their services.
I don't think that there is anything I can do to make this easier--I am living the live that I was handed even if it is not the life I want. I just get up every day and do what I have to do to keep everyone going.
ALS sucks. plain and simple.