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laurajh

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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.
 
Laura, I'm so sorry your father-in-law has been diagnosed with ALS.

The best way to survive a loved one having ALS is through networking and building relationships with people that can help when needed.

You are right in saying you couldn't go through this alone. No one can and no one should have to.

I'm hoping your husband did not inherit the genetics for it.

Zaphoon
 
WOW, I'll say you have an anxiety disorder.

Having that knowledge makes it hard to offer any help as nothing I say will be of any comfort to you.

All I can say is all the worrying in the world will not change a thing so relax and enjoy each day not worrying about tomorrow. Don't rob yourself of the enjoyment you can have each day by worrying about something you can't change.

My heart goes out to you!

Question for you - If 7 said no and 1 said yes, who is correct?
 
I'm very sorry to hear about your father-in-law, and the implications for your husband. I agree, you would certainly think after living so long that he would have been one who escaped the gene. What a terrible surprise to find that he has it at age 79. Perhaps one hope is that if your husband did get unlucky, maybe he won't get it until late in life, and hopefully by then they will have better treatments or even a cure.

I know your mind must be spinning now, but in a few weeks you will be feeling better and can begin to make some plans. Probably there will be things you can do to protect yourself and your husband financially, such as getting insurance. I don't think insurance companies are allowed to discriminate on the basis of genetic heritage, at least I hope not.

Again I'm sorry that you have to deal with this bad news and all its implications, and I hope you can begin to adjust in time.
 
Like Joel said how do we know that one doctor is the in the know. I was thinking if it is ALS well then it seems to come late in life in your husband's family, and maybe a cure will come in his lifetime. I may have familial ALS, I will never know for my mom was not diagnosed with it, but sure seem's like that is what she had. My son is 14 and I cannot imagine him with this darn crap, but I have to go on, and hope that he will see a cure or be spared. My mom always told me not to buy trouble, and I think it is good advice.
 
Hal, you owe me a beer. We posted at the same time, basically the same thing..LOL...
 
The one at the Mayo clinic who specializes in als is the one that diagnosed him. The others apparently didn't know how to work an emg, and apparently didn't think weakness and atrophy pointed to als. Go figure. Even with the family history they kept saying they didn't think that's what it was.

We both work full time and have insurance now, but if there ever comes a time where I would have to quit my job I wouldn't be able to afford it. I know I'm getting way ahead of myself, but I'm a bad "what if" person. Lots to talk about at my next therapy appointment.
 
i'm sorry to hear your father in law has ALS. it's a horrible disease to have at any age...

It's a terrible shock to realize we're, all of us, mere mortals. no one lives forever. no point in worrying about whether or not you're going to be the future caregiver to someone with ALS... believe me, this was never in my life-plan to have to nurse my 51-year-old mother with this disease.
 
Unfortunately it seems to only strike late in life for that generation. The 2 people of the next generation got it in their 40's.

I appreciate everyones' putting up with me and letting me vent. It's all very upsetting. I've been through so many emotions today, crying, fear, being angry, throwing up. I need to go lay down for a while. Thank you for listening.
 
My mother was diagnosed at age 77.
 
My brother was 47 when diagnosed. Left us at 48
 
Sounds selfish, but mums 54 - I wish she was 74 and we had 20 more years still to go before she got sick...her grandkids would be 20+ by then. I know what it is like to think, how will I cope if hubby gets it - I was thinking this for myself and said to my husband- I have 20 years till I get to mums age, what should we be doing before I get sick? So many things can happen, genetics dont mean your hubby will get the disease - my mums is not famil as they did the test, and it will always be in the back of my mind, but we need to get on with life.

Take each day as it comes - grieve as you must, but please don't wish for this disease before it's even reared it's ugly head. Support your husband in helping him get through his fathers illness- I am sure he is thinking the same as you are - possibly even more.
 
Gethling -- I feel the same way. My mum is 51... she'll probably never see my kids (as i won't be having any for a long time yet.)

it's tough to lose your mum at any age. i guess there's never a good time to say goodbye to her.
 
It's my understanding that IF a person has the gene then they have a 50/50 % chance of getting it. So first you need to have the gene. Maybe he doesen't. I know a lady 88 with bulbar ALS. Diagnosed this year. Not in the average age group but that's what makes the average age group. 20 to 90. Both are extreme ends of the average but are possible. Sorry that you got bad information laurajh.

AL.
 
My Dad was diagnosed at 78 years old. My first thought was that they must be wrong because he is way too old to have ALS. I was the one that was wrong but we are so thankful that if he had to walk this walk (its a horrible disease no matter how old you are) than at least it didn't happen when he was 50. Gelthling - I don't think you are selfish at all. We as a family are very thankful that this disease waited for so long to show up in Dad. The more stories that I read on this forum, the more I realize just how blessed we are. I wish there was no such thing as ALS - maybe in our lifetime a cure will be found.
 
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