I was already expecting the worst, but hearing it officially was like someone punched me in the stomach. My father in law was diagnosed with als today.
All the researching and reading and desperately searching for reassurance all this time was all for nothing, as everything I'd read about or had been told about als was wrong.
I was told that als rarely strikes at such a late age. It DID. he's 79. And his sister that died from it was 72. Another one is 73 and not even showing symptoms yet, if ever.
I was told that there are no sensory symptoms with als. Wrong again, because there WERE. He had numbness from the start and wasn't reponsive to pain.
I was told that slurring wouldn't come and go. It DOES. One day I could barely understand him then a few days later he's clear as a bell.
I've never heard of someone having als but not twitching. He's never had a single twich or cramp.
He's been to 7 different neurologists over the past few months and not one of them thought it was als. Highly overpaid quacks that don't know what the hell they're doing, and I always suspected they were wrong. And they get paid the big bucks, pffftth.
Until recently, I felt somewhat secure in the knowledge that as long as my father in law was ok so far into his 70's, chances were good that he hadn't inherited the defective gene, meaning that my husband would likely be free from risk. Now that I know my husband has a 50/50 chance of having inherited it, the rest of my married life is going to be spent in terror wondering if he's a ticking time bomb. If he gets it, I wouldn't be able to handle it. We wouldn't be able to afford it and I wouldn't have anyone to help me. I wouldn't know what to do. I have an anxiety disorder as it is, and while I've been getting help for that, there just isn't enough Xanax in the world.
All the researching and reading and desperately searching for reassurance all this time was all for nothing, as everything I'd read about or had been told about als was wrong.
I was told that als rarely strikes at such a late age. It DID. he's 79. And his sister that died from it was 72. Another one is 73 and not even showing symptoms yet, if ever.
I was told that there are no sensory symptoms with als. Wrong again, because there WERE. He had numbness from the start and wasn't reponsive to pain.
I was told that slurring wouldn't come and go. It DOES. One day I could barely understand him then a few days later he's clear as a bell.
I've never heard of someone having als but not twitching. He's never had a single twich or cramp.
He's been to 7 different neurologists over the past few months and not one of them thought it was als. Highly overpaid quacks that don't know what the hell they're doing, and I always suspected they were wrong. And they get paid the big bucks, pffftth.
Until recently, I felt somewhat secure in the knowledge that as long as my father in law was ok so far into his 70's, chances were good that he hadn't inherited the defective gene, meaning that my husband would likely be free from risk. Now that I know my husband has a 50/50 chance of having inherited it, the rest of my married life is going to be spent in terror wondering if he's a ticking time bomb. If he gets it, I wouldn't be able to handle it. We wouldn't be able to afford it and I wouldn't have anyone to help me. I wouldn't know what to do. I have an anxiety disorder as it is, and while I've been getting help for that, there just isn't enough Xanax in the world.