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Old 05-08-2010, 08:35 AM #1
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Default Don't Wait for Death. Make the B*****d Work For It!

I've not posted on the forums much but I have been "lurking" to keep up. I feel very badly for all those experiencing such difficult times with being undiagnosed, their disease, their lives, and relationships. My thoughts and prayers of support are with you all.

I've continued to progress in disability and severity of symptoms since my last post. Funny how my relationship with two different neurology groups has come to a close. Both overtly admit there is nothing they can do, no sense for further appointments unless a severe acute situation develops. They refer me back to my PCP for "maintenance" to keep me comfortable etc.

I'm now using my power wheelchair in the house on a regular basis. I so hate to disappoint you all but I believe I won't be in the up coming Olympics, competing in Wall Walking and Furniture Bouncing. I'll be leaving it to the "newly diagnosed" to carry on. I do love my three wheel Pride Go-Go Elite power scooter. It affords me so much freedom and fits in the trunk of my car.

OK! Now, let's address the title of this post. I have some people in my life who feel I should, "take it easy," "don't over do," "back off, you're spending too much energy." What the h*** is that all about? I got sucked into that mentality for a whole two weeks and said, "life is too short for normal people why should I sit home waiting to die?" Yes, when I exert energy I pay a severe price but have found it to always be worth it.

Now, every single day my goal is to push the envelop, totally living my old Army Airborne/Ranger unit's motto, "Evaluate, Adapt, and Overcome." I am actively pursuing activities not thought "safe" for someone with my disease. Yes! I am going to make that b*****d Death work for it!

I surprised my wife on our 36th wedding anniversary with the fulfillment of her life long dream. On our 37th anniversary we are going on a two week round trip cruise from LA to and around the Hawaiian Islands and back to LA. Flying first class from Virginia to and from LAX, cruising on the Golden Princess in a Veranda Suite with balcony. Honestly? I didn't feel comfortable waiting any longer to do this with her.

Let me close by sharing with you to not wait to get your final situations in order. See a good Elder Law Estate Attorney, set up trusts, protect your assets and establish your final wishes NOW! Check your life insurance policies too. I found two life policies that have Disability Waiver of Premium riders I was not aware of. Filed against the insurance company and won full retro payment for all premiums back 94 months. Plus, no more premiums through age 65. So, don't wait, do it now.

Until next time my friends.
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Old 05-08-2010, 08:46 AM #2
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You are my hero!
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Old 05-08-2010, 08:50 AM #3
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Amen to that, Craig! About 7 years ago I threw all caution to the wind and made it my life's purpose to do everything I was aiming to do in retirement. I am SOOOOOO GLAD I DID! Much of what I've done would be too hard for me now.

My objective is to keep doing everything right now, not to think about it and plan on it for the "future". What future? I'm going broke at breakneck speed and I have no regrets. I don't want to leave this world with one, single "wishIhadda".
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Old 05-08-2010, 09:02 AM #4
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God bless you Craig, you're awesome! Enjoy your trip with your wife. And keep up the great spirit, you inspire me!!
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Old 05-08-2010, 09:27 AM #5
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For 20 years, my DH and I worked hard in the prisons. We didnt spend money on any travel. We knew we could retire at 20 years, and we are saving our money to travel, and have fun when we retired in our 40s.

I was 44 when i retired. My husband 49. We finally bought a house in the back woods of NH and were ready to travel. Went to the local MD for our yearly check up before we leave on our first trip and ....he said...You have MS.

How I wish I would have taken advantage of all of those travel plans we turned down thru the years. All those things we saved for, only to have to struggle to get their. Im angry! I wait, saved, and planned for this,and MS stuck her fat head in the door and spoiled it.

I need to get up and go, MS or no MS. Thanks for the shot of courage.
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Old 05-08-2010, 10:31 AM #6
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Craig,

Your words always inspire me. I'm Irish, Dylan Thomas' words have been in my head since age 16, when none of this was happening "Do not go gentle into that goodnight. But rage, rage against the dying of the light".

We did two cruises, found them great. I'll look for you in the Olympics. Me in the chair. you in the scooter, bet we have the silver and Gold sewn up in the bang and chip the doorway paint category.
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Old 05-08-2010, 11:29 AM #7
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"Evaluate, Adapt, and Overcome"

This needs to be the new MS slogan! Actually, everyone could use it....MS or no MS.

You're an inspiration and an encouragement to me. Please post some pics for us of your cruise.
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Old 05-08-2010, 01:02 PM #8
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God has decided to keep you here for a lot longer, for a reason and your courage to follow that lead is wonderful.

I salute you my friend..

Yes, please, pics of the trip, would be great!
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Old 05-08-2010, 01:30 PM #9
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Craig, I am SO impressed !!!
Happy Anniversary Have the best time!!!
Thanks for sharing
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Old 05-08-2010, 11:43 PM #10
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God Bless You, Craig!! What a good reminder to keep pushing forward even when this lousy disease pushes back. Have a wonderful time on your cruise and yes, please post some pictures!

Hey kicker -- I'll be a shoo-in for the Bronze in the bang and chip the doorways contest!! Mine have been painted -- and painted -- and painted -- well, you get the idea.

It's always good hearing from you, Craig. Even if our doctors desert us, we're still here for each other! Take care......
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