One family survives ALS

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Atsugi

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Joined
Jan 11, 2011
Messages
5,921
Reason
Lost a loved one
Diagnosis
12/2010
Country
US
State
FL
City
Orlando
I wrote a huge blog post about how my family continued to evolve after the death of our PALS. You're all welcome to view it.

Maybe former CALS could post their own stories and hints about the post-PALS experience. That would be useful for everybody.

--Mike
 
I agree Mike.
If people feel able to share, it would be very comforting.
Even though I'm not terminal, there is an expected life span for all MND types.
I often think of my husband, my kids and the big 'what if'.

God bless, Janelle x
 
Mike, I appreciate how you have maintained optimism and a "moving forward" attitude while dealing with such an incredibly difficult set of circumstances. I pray my wife and children thrive as well.
 
Mike, thanks for sharing. You are a very courageous and compassionate guy. All the best to you and your boys.
 
Thank you, Mike. Your children are fortunate--what a loving father.

When I allow my mind to wander too far, I wonder what on earth I will do with myself when I am alone. Will I be ready to start a new life, free of caretaker responsibilities, or will I need a reason to get out of bed in the morning? I think we all need purpose in our lives, which means I'll need to find one. Crossing my fingers that the universe lets me do that and doesn't plop yet another one like this in my lap.
 
Nuts, you brought up several important points:

>>When I allow my mind to wander too far...

Years ago, my wandering mind led to violent thoughts. So a psychiatrist gave me meds and a therapist. The therapists work helped a lot, and I'm almost entirely off the meds. I'm happy now. To keep my mind from wandering now, I listen to the Beatles, play on the Internet, and write about some of my adventures.

>>what on earth I will do with myself when I am alone...

I worked for awhile (should have kept working), went to school a little bit (probably should have stuck with that), trained for a new career in helicopters (damn blood pressure failed the flight physical), and finally just concentrated on my college-aged kids. We built a canoe. In January we'll go wreck diving.

But when I'm totally alone? So far, I tried joining social groups that interested me at Meetup (dot) com (that's not enough), and met some women on eHarmony (I discovered I'm not attracted to women my age).

Perhaps you'll have better luck.

>>a reason to get out of bed

Yes, we all do need purpose...and faith. A purpose to get out of bed and faith that there is a future to move toward. I have faith in myself, but my purpose is still fuzzy. Hence, I frequently post here with the purpose of helping others. Still looking for a more "full time" purpose, though.

Tell us when you find another purpose for yourself.

--Mike
 
hey mike, thanks for all your support on this site.. your sharing your experiences has helped me try to git a grip on a one day at a time bases and for that i am grateful to you. love ya chally
 
Mike,

The search for purpose will be interesting. I'm sure I'll be sharing.

So, just how young do the ladies need to be? You're in danger of a world-wide matchmaking service energizing itself here, so you might as well give up the profile now!
 
So, just how young do the ladies need to be? You're in danger of a world-wide matchmaking service energizing itself here, so you might as well give up the profile now!

Ha! You are too funny. :)

Seriously, I've gotten used to the idea that I'll be eating dinner alone for the next thirty years. I'll smile at young people in love and think back to the days when I made love on a beach in the West Pacific and shared champagne on a midnight gondola ride in Venice.

>>>The search for purpose will be interesting. I'm sure I'll be sharing.

Looking forward to it. And you can always PM me if you like. --Mike
 
Now Mike don't evade questions ... so how young do the ladies need to be?

I'm sure most ladies feel the same - what I have to date someone in 'this' age group? hehehe

Great blog post BTW, you inspire us all!
 
You're a great dad, Mike.

And you serve an important purpose here for all of us.

And I hope you make love on the beach again someday, that's what I want for my ROb.
 
Mike, I'm a little late in reading this. Many many thanks for posting so honestly about your thoughts and experiences. Your kids sound like they have a dad whose priority has been making sure they are as secure and cared for as possible in the most trying and complicated situations. My commendations on your parenting choices, difficult as they may have been at the time. Your introspection and self examination is admirable.
 
Thanks, Shift, you Canadians really are very nice.

You, too, Az and Tillie. Looking forward to getting to know you better.

--Mike
 
Mike,
I just finished reading your blog post. I wonder if your children understand how rare you are? Your acceptance of both of them and the paths they have chosen for themselves is a gift.
You give me hope that someday I won't feel so lost and so angry. Maybe that's not a "full time" purpose but it's a pretty important one to me.

I hope that one day you find that person that knows just how special you are, appreciates all of you and loves champagne at midnight no matter where you are!
~Kaye
 
Wonderful to see you here Kaye. Mike is an inspiration indeed.

I have been thinking of you a lot xxx
 
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