FAMILIAL ALS IN MY HUSBAND FAMILY

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cureals**2019

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BATON ROUGE
Hi,
I am new to the group and I would like to say bless you all.

My husband has genetic als in his family. Here is how it started. His mother sister, his mother, his mother brother
then his sister (at age 55) same as her mother and his older brother just passed away from it this pass August at age 61.

This is very progressive als. My husband just turned 55. He has one brother left that is age 60.

This disease is horrible and I am trying educate myself and get information of early onset symptoms. My husband and I have 2 boys.

I do know what to check for such as choking, twitching and weakness. My husband does not talk about at all but I have express to him how
worried I am.

A couple months ago his sexual dysfunction changed. He has never had problems at all in the past. I have read that als does not affect that but
I have also read that a lady said that was the first thing that happened to her husband before all the other symptoms started popping up.
He has went to the dr and blood work is all ok. The reason I am wanting to see if this has effected anyone else. I know my husband and this just popped out
of no where when he was 54 and going on now for about 4 months.

Has anyone dealt with this?
 
Just because someone had sexual dysfunction and then got ALS does not mean that the dysfunction was due to ALS. Sexual dysfunction is extremely common in men of your husband’s age which is also a common age for ALS to start. If you ask you are going to find someone who had any given symptom or event just prior to ALS. It doesn’t mean it is a symptom. Suppose I said I had appendicitis just prior or a cold or got married just before ALS. None of those would have been related either.

the pathophysiology of ALS doesn’t cause sexual dysfunction. There are men with advanced disease who do not lose that ability. Frankly if he senses your worry that isn’t going to help his performance
 
Just because someone had sexual dysfunction and then got ALS does not mean that the dysfunction was due to ALS. Sexual dysfunction is extremely common in men of your husband’s age which is also a common age for ALS to start. If you ask you are going to find someone who had any given symptom or event just prior to ALS. It doesn’t mean it is a symptom. Suppose I said I had appendicitis just prior or a cold or got married just before ALS. None of those would have been related either.

the pathophysiology of ALS doesn’t cause sexual dysfunction. There are men with advanced disease who do not lose that ability. Frankly if he senses your worry that isn’t going to help his performance

Thank you for your advise.
 
Has your husband had genetic testing?
 
I wish there was a different word to evaluate the quality of a man's sexual function other than his "performance."
Is it like a baseball player's performance? Do you get more points for scoring?
I can hear the thoughts of every woman, now. She's laying in bed and cracks the whip "Perform!" Crack. "Perform!"

Seriously, Cure*, I have something to add to Nikki's excellent answer.
The voluntary nervous system that is affected by ALS, the system of nerves that runs the big arm and legs muscles, which are very different than the "muscle" that makes a penis stand at attention.

In fact, there are three muscles involved and three spongy tubes that fill up with blood. We have three different kinds of muscles, cardiac muscle in the heart, striated long muscles that attach between skeletal bones, and "smooth" muscles. The smooth muscles are the muscles that run your tubular shaped organs: veins, arteries, colon, and penis.

Unlike the big muscles, which lay around until they are called to contract, the smooth muscles surround your tube and are contracted in their normal state. When activated, they relax! That relaxed smooth muscle on your tubular organs allows blood in. In the case of the penis' three spongy tubes, relaxing those muscles leads to the erection that we all know and love.

Another difference is that your arms and legs big muscles are activated by the voluntary nervous system when you command it.
The smooth tubular muscles are run by the INvoluntary nervous system, which keeps your body running all the time.

ED can be caused or worsened by diabetes and poor circulation, low oxygen, Psych/Emotional, depression, and more.
It is a "use it or lose it" function. The inside tissues, if not well exercised from time to time, can attach together and become difficult to separate into the full sponge.

So that's a bunch of words meant to help understand why ALS and ED are not physically connected. Although they can, I would think, be related emotionally. Having ALS, I think, could cause ED by depression.

A man with severe ALS can still have a fine stiffy. Even if he can't stand up, he can still be erect.
 
If I'm reading your Thread right your husband is worried about the possibility of
having ALS in the future. You're watching for the signs of early onset. Was the doctor
he saw a Neurologist?

There's an old saying, "Too many men think with their dick " (Not saying that about
your husband). Well, there is a link between the brain and the penis. Another
symptom of Anxiety.

As you wrote....
"I do know what to check for such as choking, twitching and weakness. My husband
does not talk about at all but I have express to him how worried I am."

That might not be helping.

Maybe just say... "Ok, let's talk to a Urologist." From what you have written I doubt
he'd even consider counseling. The Urologist visit might work.
"
 
Last edited:
If I'm reading your Thread right your husband is worried about the possibility of
having ALS in the future. You're watching for the signs of early onset. Was the doctor
he saw a Neurologist?

There's an old saying, "Too many men think with their dick " (Not saying that about
your husband). Well, there is a link between the brain and the penis. Another
symptom of Anxiety.

As you wrote....
"I do know what to check for such as choking, twitching and weakness. My husband
does not talk about at all but I have express to him how worried I am."

That might not be helping.

Maybe just say... "Ok, let's talk to a Urologist." From what you have written I doubt
he'd even consider counseling. The Urologist visit might work.
"
Yes we have talked to a urologist and so many family members has had this disease so we know what they have done also.
I think everyone is different. We also have Neurologist, in fact he is the only doctor in Baton Rouge, La. that diagnosed his family.
Many year ago we got the run around from doctors until we met this dr and he knew what he was talking about and he been right on the money. I have called him expressed my concerns to him and he understands since he has dealt with the whole family.

Just very sad situation.
 
We don't have a "Thanks" icon/button or whatever anymore so I'll say it....

"Thanks".
 
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