themommy
Active member
- Joined
- May 3, 2012
- Messages
- 82
- Reason
- CALS
- Diagnosis
- 03/2012
- Country
- US
- State
- FL
- City
- Saint Petersburg
My husband has been diagnosed with ALS - this past month. He has both bulbar and limb onset. The bulbar symptoms are the worst...The panic in his eyes when he is choking is just awful. We are trying to do the best we can in coping with the Wicked Step Sister that has moved in and is trying to take over. She is an absolute terror.
He had a heart attack and stroke about 2 years ago and it was the widow maker. But he survived. They installed a stent and he was getting along well actually - except afterward - he had a progressive pain in his arm. Then it just got worse. The muscles started to decline - and he had numbness. He would shake his hand and arm thinking that it was a blood flow issue. This went on for a year - Cardio told him its not his heart - may be due to the stroke. Finally, after a year - he thought he might have Parkinson's - so he went in for testing. The tests were negative.
The Parkinsons DR. referred him to the Director of Neuro at USF (University of S Florida). He went in - she checked him out - and started to test. You name it - he was tested. EMG - Nerve conduction - HIV, Syphilis, Lyme, MRI - brain - MRI whole body. The entire time he was being tested - she said nothing about the diagnosis. She just wouldn't tell him anything until the test results were all in. This went on for about 3 months. He was actually irritated - (as you can imagine) and then she broke the news to him. It was ALS. In a month since the Wicked Step Sister Moved in - it has progressed to his legs and feet - but the bulbar symptoms are most disturbing. He complains of a "drawing up feeling" in his muscles at night. He has to try and stretch out every morning.
The other morning the muscles in the chest and surrounding the heart seemed to be affected. Can anyone tell me more about this symptom and how to help when his breathing becomes affected? What kinds of tests should I be asking for?
I should mention about the FTD too. Its an added bonus of the disease... Nice touch Wicked Step Sister - lets not just play with his body - lets add the mind too. Lets take him from being perfectly sane and rational to out of control rage - and inappropriate behavior at times. Stood up in a restaurant (out of the blue) and declared "at the top of his lungs" that a woman in the restaurant was wearing pants that were too tight for her. This went on for about 10 minutes - until I could usher him outside and apologize. In front of our kids (teenagers) and their friends. Traumatized? Oh you bet.
We have just started this journey. When I see some posts on this forum - of people who are insistent that they have ALS - when they don't - I am mortified. After living with the Wicked Step Sister - I am convinced that she is the most horrific disease imaginable. Why on God's green earth - would you ever want to be a part of this? I just don't get it. My husband was 50 years old, a triathlete and a vegetarian. He took care of himself. Doesn't drink - doesn't smoke.
I pray for each of you who have had the unfortunate luck of meeting the Wicked Step Sister. If I could get my hands around her neck - I would choke her myself! You can be certain of that.
He had a heart attack and stroke about 2 years ago and it was the widow maker. But he survived. They installed a stent and he was getting along well actually - except afterward - he had a progressive pain in his arm. Then it just got worse. The muscles started to decline - and he had numbness. He would shake his hand and arm thinking that it was a blood flow issue. This went on for a year - Cardio told him its not his heart - may be due to the stroke. Finally, after a year - he thought he might have Parkinson's - so he went in for testing. The tests were negative.
The Parkinsons DR. referred him to the Director of Neuro at USF (University of S Florida). He went in - she checked him out - and started to test. You name it - he was tested. EMG - Nerve conduction - HIV, Syphilis, Lyme, MRI - brain - MRI whole body. The entire time he was being tested - she said nothing about the diagnosis. She just wouldn't tell him anything until the test results were all in. This went on for about 3 months. He was actually irritated - (as you can imagine) and then she broke the news to him. It was ALS. In a month since the Wicked Step Sister Moved in - it has progressed to his legs and feet - but the bulbar symptoms are most disturbing. He complains of a "drawing up feeling" in his muscles at night. He has to try and stretch out every morning.
The other morning the muscles in the chest and surrounding the heart seemed to be affected. Can anyone tell me more about this symptom and how to help when his breathing becomes affected? What kinds of tests should I be asking for?
I should mention about the FTD too. Its an added bonus of the disease... Nice touch Wicked Step Sister - lets not just play with his body - lets add the mind too. Lets take him from being perfectly sane and rational to out of control rage - and inappropriate behavior at times. Stood up in a restaurant (out of the blue) and declared "at the top of his lungs" that a woman in the restaurant was wearing pants that were too tight for her. This went on for about 10 minutes - until I could usher him outside and apologize. In front of our kids (teenagers) and their friends. Traumatized? Oh you bet.
We have just started this journey. When I see some posts on this forum - of people who are insistent that they have ALS - when they don't - I am mortified. After living with the Wicked Step Sister - I am convinced that she is the most horrific disease imaginable. Why on God's green earth - would you ever want to be a part of this? I just don't get it. My husband was 50 years old, a triathlete and a vegetarian. He took care of himself. Doesn't drink - doesn't smoke.
I pray for each of you who have had the unfortunate luck of meeting the Wicked Step Sister. If I could get my hands around her neck - I would choke her myself! You can be certain of that.