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QuiggleFish

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Hello, I am a young man approaching my 25th year on this earth, who just may have MND... Hoping To God I Don't, but if I do I'm gonna fight the good fight...

And I just wanted to say that I've noticed a great many people who have lived with this disease for over 10 years! There is hope...obviously...but my questions are these:

1) I noticed the largest number of people who have lived over a decade are the people who were diagnosed at the youngest in their 40's... most being diagnosed in their 50's...what does this say for people being diagnosed under 40, especially under 30? a faster progression, perhaps?

2) I noticed a lot of the people who lived over a decade are really keen on vitamins, herbs, minerals etc. Does this stuff really help?

3) does moderate excercise help, especially in the young, when their bodies are more likely to build muscle more quickly (I'm answering my own question, but what the heck, would love to read another opinion...)

4) do ya'll find that a positive mental attitude adds on life, or adds to your life?

5) how long generally before communication becomes impossible... is this usually in the last few months of the disease, or can some people (non-Bulbar, let's say) all of a sudden lose their ability to speak... and say you live a longer while (a decade or so), how do you communicate with people where they can actually understand what you're saying, not just assuming? is there a way?

6) are there any forseeable working treatments in the near future? I'm talkin 4-6 years?

7) can equipment prolongue your life? if there is, how come more people aren't using it? and again, how do you communicate when on it?


I HOPE this doesn't sound silly, arrogant, stupid, oafish, barbaric, idiotic, condescending, assinine, ignorant etc.

I am genuinely intrigued, almost well obsessed because of the pending outcome of my diagnosed - I am nearly sure I have MND...but whatever, if these questions can be answered, it'd get me going in the right direction.

I'm too young to get this. It isn't fair. But who says life is fair? No other fatal disease is "fair" either... this one happens to be one of the worst... but if it can be fought, and if there's hope in the future for new medicine, I'm content to "hang in..."

Thanx So Much.

.Quiggle The Fish.
 
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Al

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Did you get these questions answered at patients like me and want to compare answers? It almost looks like you're doing an essay or something. Trust me. You'll live long. You have lots of time left to use the search feature to find answers.

AL.
 

rocmg

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oh dear. i couldn't help but have a little chuckle at Al's post.
 

joelc

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Why not wait until you have a definite diagnosis as it is rare for someone your age to have ALS.

I have to say that a positive attitude is crutial for a long life and getting a PEG and a tracheostomy and vent certainly extend a persons lifespan.
 

Zaphoon

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Joel,

I have to ask this because its been bugging me for a while, now. What in the world kind of vehicle is that you are in on that avatar picture of yours? Is that a boat? At first I thought it might be a plane but the picture is too small for me to tell.

Zaphoon
 

lydia

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I think it is a boat. Is there a prize for guessing right?
 

BethU

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Oh, what the hell ...

I HOPE this doesn't sound silly, arrogant, stupid, oafish, barbaric, idiotic, condescending, assinine, ignorant etc.

No, Quiggle, it just sounds phony as a 3 dollar bill. OK, on second thought, and in alpha order, also arrogant, asinine, clueless, condescending, over-entitled and smug.

Hang in! Fight the good fight!
 

Zaphoon

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Beth,

You are truly one of my heroes! You showed a lot of reserve just now! You make me so happy!

Zaphoon
 
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joelc

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Yes, it was our boat.
It was the hardest thing I have had to give up so far - we loved that boat and just about lived on it.
Here it is parked at our dock right in front of our prior house.

 

Zaphoon

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Joel,

I can't even imagine what that must have been like, to give up such a nice boat! Thanks for sharing the photo and answering the question. I love being on the water, too.

Zaphoon
 

brooksea

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chuckle and roll on the floor

sorry!

Nice boat! sorry you had to give it up!

Thx Joel!
 

joelc

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Thanks everyone. We used to spend almost every weekend on it during the summer.
Here is my wife sitting on the deck after I got us tied up for the night.
We have so many fantastic memories!

 

lydia

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That picture is absolutely incredible. I can feel the peace you must have had on those weekends. Where were you?
 

joelc

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We were tied up for the night north of Kaslo, BC on Kootenay Lake.
We lived in Nelson, British Columbia at that time.

Yes, it was totally peacefull !
 

brendapals

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joel,
Great pictures! Thanks for sharing them
 
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