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max1536

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Sep 18, 2014
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Loved one DX
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Florida
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Jupiter
Hello,

First off I was glad to find this community. I've been reading some of the advice and the stories and it's already given me some great ideas about to handle what may be coming.

So my family consists of my mom and dad, who are in their mid-fifties, myself in my mid-thirties, and my two teenage sisters. My mom and I live at home, I run a small web business and she runs the family, my dad works and lives in another state, he is home most weekends, and my two sisters live at boarding school. Despite the distance, we are a pretty tight family.

It looks, however, my Dad is about to diagnosed with ALS. He has some of the symptoms and his last doctor may have already diagnosed it. This has coincided with an allergic reaction he was having to his blood pressure medication, we were hoping that's all it was, but his new doctor seems to think it may be ALS as well. Not good.

Words can't describe what this is going to do to my family. This is going to be a living nightmare. My dad is going to get sick and die, my mom, losing her life partner very early in life is going to destroy her, and my two sisters have never had to face anything like this. They don't know anything about it yet, it's just known to my mom and dad and me.

Like I said, there has been some great advice to read here, and that has helped. I guess my question is, what else should I be doing? I am completely unprepared for this. Are there pitfalls to avoid? My dad is going to go from an active, athletic guy to a person with a serious disability. Do I keep shooting the breeze about ESPN with him like nothing is wrong? My mother is going to lose her best friend, likely after years of watching him get sicker. My two sisters are going to have to come to terms with the cruelty of the world far to young. How do I support them? Giving my mom hugs and telling her everything is going to be fine is the only arrow I have in my quiver right now. It's not going to be enough.

For my Dad and me, our current approach is to treat this as that it isn't true until it is true, if that makes any sense. And I do have faith that everything is going to be fine. But I'm not going to get wrapped up in wishful thinking, I want to be ready if the worse happens.

If anyone has gone through this with a loved one and can share their thoughts and advice I would really appreciate it.

Thanks and God Bless.
 
>I guess my question is, what else should I be doing? I am completely unprepared for this.

first thing is to get him to a proper ALS neuro specialist, clinic, or uni. contact alsa and/or mda for recommendations.


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Max - Thursday, September 18, 2014 2:57:55 PM
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onset 9/2010, diagnosed with ALS by Stanley Appel 8/29/2013
It Is What It Is ...

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Thanks. He's going to see a neurologist in two weeks.
 
>He's going to see a neurologist in two weeks

a real neuro or a regular one? 90+% of neuros can't spell ALS much less diagnose it. Find a specialist otherwise don't bother and see a ford mechanic ...
 
One big warning I can tell you. Do whatever you can to prevent your dad from having a fall. Absolutely, insist that he use a cane or walker if he has any limb issues whatsoever. He absolutely can't tolerate any type of fall. Don't let his pride stand in his way of using these things. It is so important. Because if he truly has ALS a fall will really speed progression up.
I wouldn't tell your whole family until you are absolutely positive but let them know that their dad is getting several tests done and he may have a serious condition. You don't have to tell them they are thinking ALS. I feel that that there is always hope in everything. Don't take that away from them prematurely. They have clinical trials going on. Maybe, your dad can get into one of them?
I would also have your dad drink Boost or Ensure so he keeos up his strength. Maybe, even take a multiple vitamin. I would also see that he and all your family member that are going to be around him get the flu shot. He doesn't need to get the flu.
Is your dad a Veteran by chance? If he is that can get really good benefits to help with things. Make sure you go to a really good ALS clinic. They will steer you in the right direction on what all is available.
What kind of symptoms seem to be presenting themselves to your dad at this time? Speech issues, limb onset, or what is he experiencing?
Take care. We are hear for you . Kim
 
Yes, as Max says. Don't just settle for any regular Dr. Get a specialist and sometimes it doesn't hurt to get a second opinion either.
 
Max, sorry you are going through this pain and uncertainty. In some ways when you get a definite diagnosis, it gets a
little easier . Then you don't have a choice but to move on. Look on the old threads - there is one on anticipatory planning and it is an excellent guide to what to do next. No, Max, if it is ALS, it won't be fine but you will pull together as a strong family and do what needs to be done. You will find your outlook on life will change as you rearrange priorities and discover what is really important. Something all of us here have learned is: Yes, you need to plan ahead but you have TODAY to enjoy and help dad find joy in what he does have. Try not to think about what is in the future or it will make you crazy! Good luck and come back here for support and strength!
 
I had to chime in when I saw this: "losing her life partner very early in life is going to destroy her"

I lost my life partner when she was 50 and I was 55. I'm not destroyed. It's tough, sure, but we have a lot of spouses here on these forums who have totally survived losing their loved one to ALS. The ALS journey is a tough one, and the death of a spouse is very rough, But there is life, and eventually happy life, afterward. It's hard to imagine it now, sure, but we do move on.
 
I am 47 and my husband is 56. He is now progressing pretty quickly after a stable period and has bulbar onset. My life will have to go on just as your mom's will...she still has 2 children to care for and who will need her.
 
>He is now progressing pretty quickly after a stable period and has bulbar onset.

Hi, Steph -- what's going on with Steve?
 
One other thing-don't go near sick people-stay away from kids in general. Any respiratory infection he gets will probably set him back permanently. We cant recover lung function the way normal people do. Have him get a flu shot and everyone else in the family too. Also have him get the pneumonia vaccine if he has not already done so.
 
Thanks for all the advice. It will be well taken.

Some notes for myself

-make sure he sees a neurologist who specializes in ALS
-flu shots
-avoid falls (this is gonna be tough he is an active guy)
-when the time is right I might have my mom come on here - it would help her to talk to some people who have watched a spouse or partner go through this.

the time you guys spend helping on this means everything. Thanks so much. I'll keep you posted.
 
>-flu shots

add the pneumonia shot too
 
And have your dad maintain his weight thru good nutrition. Weight loss seems to go with progression. Protein rich high calorie foods are important.
 
Hi Max, Atrophy coming quickly in hands,spasticiy in quads, losing his gait and walking is becoming very difficult due to spasticity. Some days he cant write because of the cramping/atrophy in his hands. He is still talking and eating but his breathing is getting worse at rest but he is refusing to use his trilogy on the couch. He hates the mask all the time. He is having some breathing difficulty when sleeping making snorting, coughing noises. Cant quite get the trilogy right so he is in bed about 12 hours a night because he isnt getting good sleep.
 
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