Barbie
Extremely helpful member
- Joined
- Dec 29, 2007
- Messages
- 2,684
- Reason
- Lost a loved one
- Diagnosis
- 01/2007
- Country
- US
- State
- FL
- City
- orlando
My husband was diagnosed 1/2007 but had symptoms like foot drop, twitching, weakness, fatigue and slurred speech for about2 years prior to that. He kept it a secret from me--he knew it was serious and didn’t want me to worry. I didn't notice anything except the fatigue until about 6 months before his diagnosis. I just thought he was stressed out from work and getting older--. In Dec. of 2006, started noticing other symptoms and I told him I was worried about him, he freaked out and had a massive panic attack, I think from the stress of holding all the worry in. I thought he was having a stroke on the spot and called 911. A week in the hospital and nothing was decided except what it wasn't. His symptoms increased massively during this month and became very apparent. GP sent us to a neuro--I think he suspected ALS. 1st appointment, the neuro told us he had ALS based on the symptoms but wanted to do a EMG and Nerve test. A week later, we had that done and he confirmed it.
Husband refused to believe it, and started hunting for some other disease and some other cure. did the Lyme thing, naturopathic, mystic, aroma therapy, chelation therapy, antibiotics and anti-fungal drugs, piles and piles of herbs, vitamins and potions. You name it, we tried it but He just continued to decline of course.
He would not use a cane when he was first diagnosed, he insisted on using a walking stick even though his hands and arms were weakest and his walking was very hard. He would fall so easily, and if he got nervous or cold, he would freeze up which made everything harder. That was the time that was the hardest…He had forbidden me to tell anyone of the ALS diagnosis because he could not accept it, so I was alone and trying to hide things from our kids and family and emotionally support him as well. When I look back at our ALS journey—that is the darkest time. There was no laughter or happiness, only fear and tears and terrible memories.
After a particularly bad fall in the bathroom, he agreed to get a scooter because it was too dangerous to walk within 3 or 4 months. He found a nice small inexpensive one on line and his life because so much better. He used it in the house, since I had to go to work after he got sick (we own a business)and he was all alone all day. He could no longer work very soon after his diagnosis because he suffered from emotional liability and he was completely breaking down. We actually found that people in public are more accepting and accommodating of a scooter than a cane or walker. He was much safer with the scooter. He still drove, which was a mistake. Sometimes I still think he was hoping to have an accident and be killed.
He used the scooter for about a year, and continued to go downhill. His arms became weaker and weaker and he could barely drive the scooter. His swallowing was bad and he was choking. I began pureeing his food. He had terrible cramps and twitching. He would not let anyone but me care for him and his emotions were out of control. His personality changed. He insisted on using the toilet instead of a potty chair and it took 2 or three people to move him into the tiny water closet. He could not stand in the shower and would not let me modify the bathroom so he had sponge baths everyday. I know I sound weak, but he was always a strong personality and he had his own ideas about his life. I loved him and didn’t want to make him more unhappy than he was already was. About a year after his original diagnosis, I convinced him to give up on all the charlatans and “cures” and go back to an ALS clinic. He agreed to go to Mayo. In April of 2008, we got a confirmation of ALS from Mayo in Jacksonville. Even though he could still walk (barely) they moved forward with a PWC for him. He refused a peg and bipap at that time. Overall though, things began to get a little better for us. He still hoped that he did not have ALS (still thinks that to this day) but he began taking antidepressants to help with the emotional liability and he became very involved in working on the computer and making everything work for him. He began “living with ALS”, I was not doing as well however. The exhaustion of caring for him, our family and our business was more than I could take. I was very despondent and weepy and tired to the bone. I found this forum, which was so helpful, and I began taking anti-depressants. As I started feeling better emotionally, I became a better caregiver. I am ”living with ALS “ now also. I insisted on changes to our living situation (the bathroom!) got the shower remodeled and bought a potty chair. Also started getting caregivers in to help with his daily care. I found out about a test drug for emotional problems and had it compounded by a pharmacist for him. He became much more normal acting and easier to deal with. Interestingly, his progression began to slow down in 2010. He is still progressing, but is doing pretty good considering how quickly things were moving in 2007. He still refuses a bipap and peg and only weighs about 120 lbs (Pre ALS 200 lbs.) I had his breathing tested and his FVC is 22% and co2 is 38%, and o2 is 90. He says he is fine, so I say he is fine. He is still the boss of his own body. He is busy with the computer, learning new things and programs. We laugh and joke and don’t cry anymore.
Now, we have a daily caregiver, so he is only alone for a couple of hours a day until one of our kids gets home from school. He can do nothing for himself—he has no use of arms, no ability to walk, speech is difficult and eating is very hard. Sometimes he has coughing attacks and lots of mucus comes up. That is very scary when it happens—his blood pressure goes up, he stiffens up and it is so hard to comfort him. Afterwards, he is exhausted and worn out. I still see changes happening—more atrophy in his legs now, speech is harder to understand, more disturbed sleep and bathroom problems Ugh.
When will this be over? Who knows…the standard answer is 3-5 years yet here we are at 6.5. I fear the future of course, and my heart hurts when I think of it. In the mean time, life goes on and he is an inspiration to me. His positive attitude and zest for life gives me hope.
So this is our story, and I hope someone gets something good out of it.
Husband refused to believe it, and started hunting for some other disease and some other cure. did the Lyme thing, naturopathic, mystic, aroma therapy, chelation therapy, antibiotics and anti-fungal drugs, piles and piles of herbs, vitamins and potions. You name it, we tried it but He just continued to decline of course.
He would not use a cane when he was first diagnosed, he insisted on using a walking stick even though his hands and arms were weakest and his walking was very hard. He would fall so easily, and if he got nervous or cold, he would freeze up which made everything harder. That was the time that was the hardest…He had forbidden me to tell anyone of the ALS diagnosis because he could not accept it, so I was alone and trying to hide things from our kids and family and emotionally support him as well. When I look back at our ALS journey—that is the darkest time. There was no laughter or happiness, only fear and tears and terrible memories.
After a particularly bad fall in the bathroom, he agreed to get a scooter because it was too dangerous to walk within 3 or 4 months. He found a nice small inexpensive one on line and his life because so much better. He used it in the house, since I had to go to work after he got sick (we own a business)and he was all alone all day. He could no longer work very soon after his diagnosis because he suffered from emotional liability and he was completely breaking down. We actually found that people in public are more accepting and accommodating of a scooter than a cane or walker. He was much safer with the scooter. He still drove, which was a mistake. Sometimes I still think he was hoping to have an accident and be killed.
He used the scooter for about a year, and continued to go downhill. His arms became weaker and weaker and he could barely drive the scooter. His swallowing was bad and he was choking. I began pureeing his food. He had terrible cramps and twitching. He would not let anyone but me care for him and his emotions were out of control. His personality changed. He insisted on using the toilet instead of a potty chair and it took 2 or three people to move him into the tiny water closet. He could not stand in the shower and would not let me modify the bathroom so he had sponge baths everyday. I know I sound weak, but he was always a strong personality and he had his own ideas about his life. I loved him and didn’t want to make him more unhappy than he was already was. About a year after his original diagnosis, I convinced him to give up on all the charlatans and “cures” and go back to an ALS clinic. He agreed to go to Mayo. In April of 2008, we got a confirmation of ALS from Mayo in Jacksonville. Even though he could still walk (barely) they moved forward with a PWC for him. He refused a peg and bipap at that time. Overall though, things began to get a little better for us. He still hoped that he did not have ALS (still thinks that to this day) but he began taking antidepressants to help with the emotional liability and he became very involved in working on the computer and making everything work for him. He began “living with ALS”, I was not doing as well however. The exhaustion of caring for him, our family and our business was more than I could take. I was very despondent and weepy and tired to the bone. I found this forum, which was so helpful, and I began taking anti-depressants. As I started feeling better emotionally, I became a better caregiver. I am ”living with ALS “ now also. I insisted on changes to our living situation (the bathroom!) got the shower remodeled and bought a potty chair. Also started getting caregivers in to help with his daily care. I found out about a test drug for emotional problems and had it compounded by a pharmacist for him. He became much more normal acting and easier to deal with. Interestingly, his progression began to slow down in 2010. He is still progressing, but is doing pretty good considering how quickly things were moving in 2007. He still refuses a bipap and peg and only weighs about 120 lbs (Pre ALS 200 lbs.) I had his breathing tested and his FVC is 22% and co2 is 38%, and o2 is 90. He says he is fine, so I say he is fine. He is still the boss of his own body. He is busy with the computer, learning new things and programs. We laugh and joke and don’t cry anymore.
Now, we have a daily caregiver, so he is only alone for a couple of hours a day until one of our kids gets home from school. He can do nothing for himself—he has no use of arms, no ability to walk, speech is difficult and eating is very hard. Sometimes he has coughing attacks and lots of mucus comes up. That is very scary when it happens—his blood pressure goes up, he stiffens up and it is so hard to comfort him. Afterwards, he is exhausted and worn out. I still see changes happening—more atrophy in his legs now, speech is harder to understand, more disturbed sleep and bathroom problems Ugh.
When will this be over? Who knows…the standard answer is 3-5 years yet here we are at 6.5. I fear the future of course, and my heart hurts when I think of it. In the mean time, life goes on and he is an inspiration to me. His positive attitude and zest for life gives me hope.
So this is our story, and I hope someone gets something good out of it.
